Lyme Disease Symptoms
Rethinking Lyme disease treatments
01/29/12 13:52
Whenever somebody else talks about their battle with Lyme, whether it’s about the symptoms, diagnosis, or treatment itself, I get a deep sense of validation. It’s a mixture of relief that I’m not crazy and empathy for the person who went through a hell-realm that I know intimately. My dad’s generation called these foxhole tales, shared experiences while hiding from a hostile enemy.
Celebrities’ stories have a potent affect on our collective notions about disease. When someone famous for car racing or acting or novel writing, or when the President of the US (GW Bush) has fought and defeated the same powerful foe as we have, we want to know their stories. We may not be equal in status but we’re equally brought to our knees by the Lyme bacteria. Hearing their stories about dealing with Lyme might trigger an idea that works, or give us strength to try a new approach.
Parker Posey was diagnosed with Lyme disease in February 2009 and received the standard IDSA Lyme treatment of antibiotics. After completing the round of antibiotics and experiencing a return of her symptoms, she decided not to continue on a second round and instead turned to a holistic approach involving detoxification, diet and supplements. Her experience led to her involvement with a documentary film by rethinkingcancer.org, the story of five cancer patients and one person with Lyme disease who all made the decision to treat their diseases through alternative means, and who have all lived years beyond the time their doctors predicted.
Posey asks: “How can a natural approach to healing oneself be considered so unconventional? Why do we think we can't play an active role in getting healthy? Why do we give ourselves away so easily to pharmaceuticals that deplete our system and confuse the natural healing process?”
Lyme patient David Walant has been free of Lyme for 20 years. Listen to him in this brief clip from the webpage of rethinkingcancer.org.
Karen Allen, who played opposite Jeff Bridges in Starman, was interviewed in 2010 on the blog, Macrobiotic Adventures, about her difficult journey through Lyme disease and back to health. Her story is familiar to almost everyone with Lyme, it’s a series of tortuous misdiagnoses and failed cures, and then finally a way through the pain and confusion and back to a normal, creative life. The interview is fairly long, but very intriguing. Karen talks about her dynamic healing experience with the parasite zapper invented by Canadian Dr. Hulda Clark.
I hope you find these clips inspiring, as I have. Remember you are not alone and you’re not crazy. Change your diet if you think it will benefit you. Change your sedentary life and exercise every single day. Stay limber, stretch and relax daily, and surround yourself with loving friends. It’s your life and it’s worth every precious moment you have to get well.
Celebrities’ stories have a potent affect on our collective notions about disease. When someone famous for car racing or acting or novel writing, or when the President of the US (GW Bush) has fought and defeated the same powerful foe as we have, we want to know their stories. We may not be equal in status but we’re equally brought to our knees by the Lyme bacteria. Hearing their stories about dealing with Lyme might trigger an idea that works, or give us strength to try a new approach.
Parker Posey was diagnosed with Lyme disease in February 2009 and received the standard IDSA Lyme treatment of antibiotics. After completing the round of antibiotics and experiencing a return of her symptoms, she decided not to continue on a second round and instead turned to a holistic approach involving detoxification, diet and supplements. Her experience led to her involvement with a documentary film by rethinkingcancer.org, the story of five cancer patients and one person with Lyme disease who all made the decision to treat their diseases through alternative means, and who have all lived years beyond the time their doctors predicted.
Posey asks: “How can a natural approach to healing oneself be considered so unconventional? Why do we think we can't play an active role in getting healthy? Why do we give ourselves away so easily to pharmaceuticals that deplete our system and confuse the natural healing process?”
Lyme patient David Walant has been free of Lyme for 20 years. Listen to him in this brief clip from the webpage of rethinkingcancer.org.
Karen Allen, who played opposite Jeff Bridges in Starman, was interviewed in 2010 on the blog, Macrobiotic Adventures, about her difficult journey through Lyme disease and back to health. Her story is familiar to almost everyone with Lyme, it’s a series of tortuous misdiagnoses and failed cures, and then finally a way through the pain and confusion and back to a normal, creative life. The interview is fairly long, but very intriguing. Karen talks about her dynamic healing experience with the parasite zapper invented by Canadian Dr. Hulda Clark.
I hope you find these clips inspiring, as I have. Remember you are not alone and you’re not crazy. Change your diet if you think it will benefit you. Change your sedentary life and exercise every single day. Stay limber, stretch and relax daily, and surround yourself with loving friends. It’s your life and it’s worth every precious moment you have to get well.
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How to recognize Lyme symptoms in your child
12/06/11 10:44
Probably the most frightening thing, aside from contracting a Lyme infection yourself, is discovering that your child has Lyme. Parents number one role is to protect, after all. We are the first line of defense between our kids and the big, bad world. We’re hardwired to keep broken glass, vampires and werewolves at bay, to say nothing of the lions, tigers and bears. But some adversaries come in small sizes. Sometimes they’re even invisible to the naked eye.
Lyme shares a long list of symptoms with a number of other illnesses. So what sort of treatment do you give if you don’t know the difference between one disease and another? How can you tell whether your kid has the flu or he’s suffering with Lyme? You find your mind racing to find answers, to fill in the blanks. But, you may reason, you never saw a tick so therefore it can’t be Lyme.
One thing we have to bear in mind is that it’s possible to get a tick bite that nobody notices. You may not have seen any ticks on your child, but if he or she was playing in an area where ticks are prone to live, it is possible that your child was exposed.
I’ve heard some medical doctors say that Lyme disease cannot be transmitted from a tick who hasn’t been attached to a person’s skin for less than 24 hours. I’ve heard them say 36 and 48 hours as well. But according to noted researcher and former Yale post doctoral-operative fellow in therapeutic radiology, Dr. Eva Sapi, there is no evidence to suggest that Lyme can’t be contracted in less time than that. She and her research students in Lyme treatment regularly go on tick-gathering forays in the forest near their New Haven, CT research lab. She has seen people contract Lyme disease when a known-to-be infectious tick has only been attached to their skin for an hour or two, no longer.
People often make a mistake in thinking that if the bull’s-eye rash that is so closely associated with Lyme isn’t present, than it just can’t be a Lyme infection. However, that simply doesn’t seem to be the case. Although a Lyme infection can be the most likely suspect if that rash is present, the absence of the rash does not indicated that it isn’t a Lyme infection. So if you haven’t seen a tick, and you don’t detect a skin rash, what do you look for?
Lyme symptoms in your child may include the following:
flu-like body aches that don’t improve with sleep
fever
headache
rash
crushing fatigue that is not relieved with rest
joint pain
sensitivity to florescent lights
night sweats
nausea and vomiting
insomnia
forgetfulness and confusion
If you suspect that your child may have Lyme, please try to find a good Lyme literate doctor. Call ILADS and ask them to give you the name and contact info for the doctor or pediatrician nearest you. Don’t be surprised if a knowledgeable Lyme doctor, who suspects that your child may have a Lyme infection, starts treatment with antibiotics before test results are in. An untreated infection can involve the brain, heart, joints and all the systems of your child’s body. Early treatment for Lyme is so very important, as the disease has three stages. Treatment during stage one is the most reliable way to prevent further progression of the disease.
Lyme shares a long list of symptoms with a number of other illnesses. So what sort of treatment do you give if you don’t know the difference between one disease and another? How can you tell whether your kid has the flu or he’s suffering with Lyme? You find your mind racing to find answers, to fill in the blanks. But, you may reason, you never saw a tick so therefore it can’t be Lyme.
One thing we have to bear in mind is that it’s possible to get a tick bite that nobody notices. You may not have seen any ticks on your child, but if he or she was playing in an area where ticks are prone to live, it is possible that your child was exposed.
I’ve heard some medical doctors say that Lyme disease cannot be transmitted from a tick who hasn’t been attached to a person’s skin for less than 24 hours. I’ve heard them say 36 and 48 hours as well. But according to noted researcher and former Yale post doctoral-operative fellow in therapeutic radiology, Dr. Eva Sapi, there is no evidence to suggest that Lyme can’t be contracted in less time than that. She and her research students in Lyme treatment regularly go on tick-gathering forays in the forest near their New Haven, CT research lab. She has seen people contract Lyme disease when a known-to-be infectious tick has only been attached to their skin for an hour or two, no longer.
People often make a mistake in thinking that if the bull’s-eye rash that is so closely associated with Lyme isn’t present, than it just can’t be a Lyme infection. However, that simply doesn’t seem to be the case. Although a Lyme infection can be the most likely suspect if that rash is present, the absence of the rash does not indicated that it isn’t a Lyme infection. So if you haven’t seen a tick, and you don’t detect a skin rash, what do you look for?
Lyme symptoms in your child may include the following:
flu-like body aches that don’t improve with sleep
fever
headache
rash
crushing fatigue that is not relieved with rest
joint pain
sensitivity to florescent lights
night sweats
nausea and vomiting
insomnia
forgetfulness and confusion
If you suspect that your child may have Lyme, please try to find a good Lyme literate doctor. Call ILADS and ask them to give you the name and contact info for the doctor or pediatrician nearest you. Don’t be surprised if a knowledgeable Lyme doctor, who suspects that your child may have a Lyme infection, starts treatment with antibiotics before test results are in. An untreated infection can involve the brain, heart, joints and all the systems of your child’s body. Early treatment for Lyme is so very important, as the disease has three stages. Treatment during stage one is the most reliable way to prevent further progression of the disease.
Diagnosis and treatment of Babesia & other coinfections
11/29/11 14:47
If you have been treated for Lyme Disease but you’re still in pain, you may have MCIDS, or Multiple Chronic Infectious Disease Syndrome. Dr Richard Horowitz coined this term for patients presenting with symptoms of multiple chronic infections, many that don’t test positive with the standard tests. Challenges to the immune system include chronic inflammation, problems detoxifying heavy metals, sleep disorders which in turn exacerbate inflammation, and mitochondrial infections. Patients with multiple coinfections may have a suppressed immune system, and ultimately it is the inflammation that causes the problems.
Dr. Horowitz has treated almost 12,000 patients with Lyme Disease over the past twenty years. He has observed that most of his patients have had multiple infections, viruses and parasites and that for this reason, the standard of care recommended by the IDSA has been less than effective. Patients may have one or more coinfections such as Babesia, Erlichia, Bartonella, additional piroplasms which don’t test well with the standard testing. Some have hormonal disorders, nutritional and enzyme deficiencies, GI problems, autonomic nervous system disfunction and other symptom complexes.
To describe the challenge of treating a patient with MCIDS, Dr Horowitz uses the following analogy. “It’s like the patient has ten nails in their foot, and you pull out only one. They still have pain.” Doctors need to address all of the factors and overlapping symptoms.
Also, there are evidently different strains of Borrelia and Babesia that may not be detected with the ELISA or the Western Blot tests. Recent evidence suggests that new species of tick borne coinfections may be arising and may occur in regions of the US and worldwide. One tick bite can transmit a cesspool of multiple infections.
Here is an intriguing paper by Dr. Horowitz illustrating the interest in investigating Alternative Medicine to treat Lyme and coinfections that elude conventional Western medicine. Herbs, Hormones & Heavy Metals. (.pdf)
Dr. Richard Horowitz is the President of the International Lyme and Associated Disease Educational Foundation. He serves the Lyme community in multiple ways, primarily as an internist at the Hudson Valley Healing Arts Center, in Hyde Park, New York. In 2007, the Turn the Corner Foundation named him the Humanitarian of the Year for his ongoing work with chronic Lyme disease.
Dr. Horowitz has treated almost 12,000 patients with Lyme Disease over the past twenty years. He has observed that most of his patients have had multiple infections, viruses and parasites and that for this reason, the standard of care recommended by the IDSA has been less than effective. Patients may have one or more coinfections such as Babesia, Erlichia, Bartonella, additional piroplasms which don’t test well with the standard testing. Some have hormonal disorders, nutritional and enzyme deficiencies, GI problems, autonomic nervous system disfunction and other symptom complexes.
To describe the challenge of treating a patient with MCIDS, Dr Horowitz uses the following analogy. “It’s like the patient has ten nails in their foot, and you pull out only one. They still have pain.” Doctors need to address all of the factors and overlapping symptoms.
Also, there are evidently different strains of Borrelia and Babesia that may not be detected with the ELISA or the Western Blot tests. Recent evidence suggests that new species of tick borne coinfections may be arising and may occur in regions of the US and worldwide. One tick bite can transmit a cesspool of multiple infections.
Here is an intriguing paper by Dr. Horowitz illustrating the interest in investigating Alternative Medicine to treat Lyme and coinfections that elude conventional Western medicine. Herbs, Hormones & Heavy Metals. (.pdf)
Dr. Richard Horowitz is the President of the International Lyme and Associated Disease Educational Foundation. He serves the Lyme community in multiple ways, primarily as an internist at the Hudson Valley Healing Arts Center, in Hyde Park, New York. In 2007, the Turn the Corner Foundation named him the Humanitarian of the Year for his ongoing work with chronic Lyme disease.
Reduce Lyme Symptoms by Nurturing Yourself
11/12/11 13:07
Along the streets in my neighborhood, colorful leaves lie jumbled in piles, trees are half empty or illuminated by unexpected shafts of sunlight to reveal tones of red, yellow and amber. The wind has a wicked bite, and suddenly the holidays are right around the corner.
Making plans to gather with family can be a source of joy or nervousness, or a raw combination of all sorts of emotions. Stress is a part of everyday life, but add in a spate of bad weather or a run of obligatory social events and it can be a recipe for real exhaustion, especially if you’re struggling with Lyme symptoms.
Naturally, during the fall & winter we tend to spend more time indoors, where we’re less likely to exercise or be exposed to natural light, and more likely to eat a little more. Most Lyme patients are familiar with symptoms of mild to moderate depression, and heading into the cooler seasons can trigger feelings of sadness or loss.
What are some simple ways to be good to yourself during this time?
One way to be proactive is to pay closer attention to what you eat. Dr. Andrew Weil’s food pyramid is a helpful visual chart. At the bottom are foods to eat more of. Start with a solid foundation of a variety of vegetables, which are rich in flavonoids and caratenoids that can help keep inflammation in check. Fruits and veggies both contain antioxidant and anti-inflammatory activity.
When the wind whips around our house and the nights are long, I gravitate to the kitchen for comfort and creativity. Chopping vegetables for a pot of savory soup creates a rhythm and gives me a sense of order, which is something I seem to have developed a stronger need for throughout the process of healing from Lyme. Hot soup always tastes good and fills the house with delicious smells. I always try to buy organic when possible, and I’m blessed with a sister who lives nearby, grows amazing greens and keeps us freshly supplied.
Here is a list of ingredients that went into the pot last night:
1 yellow onion
3 cloves of garlic
2 carrots
6 large leaves of fresh chard
3 potatoes
baked, leftover salmon pieces
3 cups of vegetable broth
Italian herbs to taste
3 drops of cayenne-based hot sauce
salt & pepper
Chop onions & garlic and quick-fry in a generous puddle of olive oil. Meantime, bring the broth to a boil and turn down to a simmer. Drop in chopped veggies, seasonings, hot sauce, and put the fish in last, since it’s already cooked and just needs to heat up.
Serve with a thickly sliced piece of bread, gluten free. Enjoy!
Making plans to gather with family can be a source of joy or nervousness, or a raw combination of all sorts of emotions. Stress is a part of everyday life, but add in a spate of bad weather or a run of obligatory social events and it can be a recipe for real exhaustion, especially if you’re struggling with Lyme symptoms.
Naturally, during the fall & winter we tend to spend more time indoors, where we’re less likely to exercise or be exposed to natural light, and more likely to eat a little more. Most Lyme patients are familiar with symptoms of mild to moderate depression, and heading into the cooler seasons can trigger feelings of sadness or loss.
What are some simple ways to be good to yourself during this time?
One way to be proactive is to pay closer attention to what you eat. Dr. Andrew Weil’s food pyramid is a helpful visual chart. At the bottom are foods to eat more of. Start with a solid foundation of a variety of vegetables, which are rich in flavonoids and caratenoids that can help keep inflammation in check. Fruits and veggies both contain antioxidant and anti-inflammatory activity.
When the wind whips around our house and the nights are long, I gravitate to the kitchen for comfort and creativity. Chopping vegetables for a pot of savory soup creates a rhythm and gives me a sense of order, which is something I seem to have developed a stronger need for throughout the process of healing from Lyme. Hot soup always tastes good and fills the house with delicious smells. I always try to buy organic when possible, and I’m blessed with a sister who lives nearby, grows amazing greens and keeps us freshly supplied.
Here is a list of ingredients that went into the pot last night:
1 yellow onion
3 cloves of garlic
2 carrots
6 large leaves of fresh chard
3 potatoes
baked, leftover salmon pieces
3 cups of vegetable broth
Italian herbs to taste
3 drops of cayenne-based hot sauce
salt & pepper
Chop onions & garlic and quick-fry in a generous puddle of olive oil. Meantime, bring the broth to a boil and turn down to a simmer. Drop in chopped veggies, seasonings, hot sauce, and put the fish in last, since it’s already cooked and just needs to heat up.
Serve with a thickly sliced piece of bread, gluten free. Enjoy!
Lithium as treatment for Lyme-related depression
10/15/11 13:06
Tracy writes:
I would like to find research on lithium as a supplement for Lyme disease. I noticed in one of your posts that you took this your first year.
Both my LLMD and naturopath are in support of supplementing with it. It's helped me personally. I wonder if you have any research to suggest? I would like to share it with others to consider as an alternative to discuss with their medical professionals, but it seems without the research proof people are questioning it. (Perhaps as an alternative say, to Xanathx and Klonopin which cause detox stress on the body while we need instead to focus on clearing the Lyme bugs and neurotoxins.)
I hope you can provide info or suggestion where to further my research.
Dear Tracy, Thank you for your question.
I remember sitting in my naturopath’s office in agonizing pain, trying to follow his advice through my brain-fog. When he suggested lithium, my naturally cautious nature kicked in. “What is it?” I asked. He said, “it’s a mineral.”
In my miserable state though, lithium sounded to me vaguely sinister, like something out of an old Dracula flick, the mug of steaming potion given to the victims to keep them docile. Even worse, I knew that lithium was somehow associated with psychotic episodes and depression. Did this nice doctor simply think I was just losing it?
I’d told him about the phone that wouldn’t stop ringing, about hearing my dead father saying my name. I had told him that I couldn’t make heads or tails of any paragraph I tried to read, and that recently, I had remained in the same position in the same chair from sun up to sundown, because I could not decide what to do. (I confided that I thought maybe I’d died, and just hadn’t figured that out yet.) Depressed? I think any formerly healthy person who wakes up to find they can’t walk, talk, or think is entitled to a little depression. But I wasn’t sure whether taking lithium would firmly secure my insanity, or help me get through it.
With considerable relief, I can report that it helped me through the toughest time in my life. It is also inexpensive as I recall, and I didn’t find it at all addicting. I’m glad it’s also helped you.
Your point is well-taken that without the supporting research, there is reason to doubt claims. Fortunately for those who want more information about the use of lithium, there is plenty of science behind it. In my opinion it is not without risks and benefits, like other drugs, and should only be prescribed by a doctor. In future posts please watch for an interview with my naturopath, whom I have asked to share what he knows and point to further research. Here, for starters:
From an article in the Harvard Review of Psychiatry, 2002:
The special usefulness of lithium lies in long-term prevention of recurrences of mania and bipolar depression and in reducing risk of suicidal behavior. Lithium also may be beneficial in recurrent unipolar depression and is an effective adjunct for treatment-resistant depression.
Reference:
Harvard Review of Psychiatry, 2002, Vol. 10, No. 2 : Pages 59-75
Is Lithium Still Worth Using? An Update of Selected Recent Research
Ross J. Baldessarini, Leonardo Tondo, John Hennen and ,Adele C. Viguera
(doi: 10.1080/hrp.10.2.59.75)
And here are three articles from the British Journal of Psychiatry:
Lithium in Bipolar Mood Disorder
Monitoring Patients on Lithium
Use of antipsychotic drugs and lithium in mania
Learn more about Lyme disease treatments.
I would like to find research on lithium as a supplement for Lyme disease. I noticed in one of your posts that you took this your first year.
Both my LLMD and naturopath are in support of supplementing with it. It's helped me personally. I wonder if you have any research to suggest? I would like to share it with others to consider as an alternative to discuss with their medical professionals, but it seems without the research proof people are questioning it. (Perhaps as an alternative say, to Xanathx and Klonopin which cause detox stress on the body while we need instead to focus on clearing the Lyme bugs and neurotoxins.)
I hope you can provide info or suggestion where to further my research.
Dear Tracy, Thank you for your question.
I remember sitting in my naturopath’s office in agonizing pain, trying to follow his advice through my brain-fog. When he suggested lithium, my naturally cautious nature kicked in. “What is it?” I asked. He said, “it’s a mineral.”
In my miserable state though, lithium sounded to me vaguely sinister, like something out of an old Dracula flick, the mug of steaming potion given to the victims to keep them docile. Even worse, I knew that lithium was somehow associated with psychotic episodes and depression. Did this nice doctor simply think I was just losing it?
I’d told him about the phone that wouldn’t stop ringing, about hearing my dead father saying my name. I had told him that I couldn’t make heads or tails of any paragraph I tried to read, and that recently, I had remained in the same position in the same chair from sun up to sundown, because I could not decide what to do. (I confided that I thought maybe I’d died, and just hadn’t figured that out yet.) Depressed? I think any formerly healthy person who wakes up to find they can’t walk, talk, or think is entitled to a little depression. But I wasn’t sure whether taking lithium would firmly secure my insanity, or help me get through it.
With considerable relief, I can report that it helped me through the toughest time in my life. It is also inexpensive as I recall, and I didn’t find it at all addicting. I’m glad it’s also helped you.
Your point is well-taken that without the supporting research, there is reason to doubt claims. Fortunately for those who want more information about the use of lithium, there is plenty of science behind it. In my opinion it is not without risks and benefits, like other drugs, and should only be prescribed by a doctor. In future posts please watch for an interview with my naturopath, whom I have asked to share what he knows and point to further research. Here, for starters:
From an article in the Harvard Review of Psychiatry, 2002:
The special usefulness of lithium lies in long-term prevention of recurrences of mania and bipolar depression and in reducing risk of suicidal behavior. Lithium also may be beneficial in recurrent unipolar depression and is an effective adjunct for treatment-resistant depression.
Reference:
Harvard Review of Psychiatry, 2002, Vol. 10, No. 2 : Pages 59-75
Is Lithium Still Worth Using? An Update of Selected Recent Research
Ross J. Baldessarini, Leonardo Tondo, John Hennen and ,Adele C. Viguera
(doi: 10.1080/hrp.10.2.59.75)
And here are three articles from the British Journal of Psychiatry:
Lithium in Bipolar Mood Disorder
Monitoring Patients on Lithium
Use of antipsychotic drugs and lithium in mania
Learn more about Lyme disease treatments.
Educate & legislate: Sen. Charles Schumer on Lyme disease
10/02/11 14:37
Senator Charles Schumer in August, talking to the press about Lyme disease. His message is that we need to educate and legislate, and teach each other how to identify the symptoms early, before a treatable condition becomes a horrendous nightmare: chronic Lyme disease.
Schumer states that he is personally aware of the dangers of not treating Lyme disease immediately after contracting an infection. He says he was bit by a tick in the Hudson Valley, while inspecting a dam in the area. He sought medical treatment immediately, and says he was cured because it was caught early enough.
Senator Schumer’s comments, quoted from the Hudson Valley Insider, Aug 13, 2011:
“We need to bring Lyme disease and Babesiosis out of the weeds and better educate the public about how to keep themselves and their families’ safe,” said Schumer. “Lyme disease is a problem we’ve seen for decades, and Babesiosis is a recently growing issue in New York, but we haven’t done nearly enough at the federal level to tackle it. Tick-borne illnesses often go unnoticed for months, yet can be devastating for many victims and their families. The summertime brings about warm weather and school vacation, causing higher rates of infection in Ulster County and beyond. The tick is a little pest that can pose a big problem, and this legislation would boost research of Lyme disease and Babesiosis and increase education and awareness in the community to better fight these diseases.”
Just for the record, Senator Schumer states that “20,000 Americans are infected with Lyme,” which is a misleading statement, and probably also a grossly underestimated number. Lyme experts estimate the number of infections to be approximately 10 times higher, more like 200,000 annual cases. Mangled facts aside, it’s always good to hear and see an influential politician speaking out for Lyme awareness.
Educate and legislate!
Schumer states that he is personally aware of the dangers of not treating Lyme disease immediately after contracting an infection. He says he was bit by a tick in the Hudson Valley, while inspecting a dam in the area. He sought medical treatment immediately, and says he was cured because it was caught early enough.
Senator Schumer’s comments, quoted from the Hudson Valley Insider, Aug 13, 2011:
“We need to bring Lyme disease and Babesiosis out of the weeds and better educate the public about how to keep themselves and their families’ safe,” said Schumer. “Lyme disease is a problem we’ve seen for decades, and Babesiosis is a recently growing issue in New York, but we haven’t done nearly enough at the federal level to tackle it. Tick-borne illnesses often go unnoticed for months, yet can be devastating for many victims and their families. The summertime brings about warm weather and school vacation, causing higher rates of infection in Ulster County and beyond. The tick is a little pest that can pose a big problem, and this legislation would boost research of Lyme disease and Babesiosis and increase education and awareness in the community to better fight these diseases.”
Just for the record, Senator Schumer states that “20,000 Americans are infected with Lyme,” which is a misleading statement, and probably also a grossly underestimated number. Lyme experts estimate the number of infections to be approximately 10 times higher, more like 200,000 annual cases. Mangled facts aside, it’s always good to hear and see an influential politician speaking out for Lyme awareness.
Educate and legislate!
Start where you are. Fight chronic inflammation.
08/21/11 12:29
Lyme disease is a thief. Chronic lyme disease symptoms can go on affecting a person’s life for many years. Given the complexity of receiving a correct diagnosis, a person with an undetected, underlying Lyme infection may instead be labeled with RA, fibromyalgia, Chronic Fatigue Syndrome, MS, ALS, or almost anything from a truckload of other conditions.
Meantime, life goes on. Friends and siblings get jobs, travel, go to grad school, fall in love. They get married, have babies, and not in any particular order. But for the person with Lyme those fundamental pathways, common fruits of life we for granted, may simply not be an option. Lyme has stolen years.
But enough of spilled tears, right? The wisest thing anyone can do is to start where you are. If you’ve had it with chronic lyme disease symptoms, take heart. Many others have been in your shoes. And they’ve gotten through it. Regardless of the time and opportunities missed because of Lyme, there are many people living happy, loving, productive lives again.
Exactly how the stealthy Lyme bacterial complex works is still under scrutiny. Scientists and doctors, some who are also personally infected with Lyme disease, such as Dr. Eva Sapi and veterinarian, Lyme and immunology expert Dr. Scott Taylor, toil to understand and find a cure for Lyme. One thing we know for certain is that Lyme is an inflammatory disease, and chronic inflammation is the root cause of many life threatening conditions, including Lyme.
Cortico-steroids are commonly given to Lyme patients by doctors without any knowledge or clinical experience in diagnosing chronic Lyme disease symptoms. The faulty logic goes something like this: the patient is experiencing distress, inflammation is causing the distress, steroids (usually Prednisone) will reduce the inflammation and thus reduce the patient’s distress. Not! Predinose will supress the patient’s immune system, causing it to tolerate the Borrelia bacteria instead of attacking and killing it. The Lyme infection is almost guaranteed to get worse, not better.
What can be done about chronic inflammation? Are there safe prescription drugs available, and does your LLMD know about them? What about natural alternatives? Aside from fish oil, are there other products we can take to reduce this silent killer? Does physical exercise really help people dealing with chronic inflammation? Or can it hurt? In my next post, we’ll delve into the various ways to treat chronic inflammation.
Meantime, life goes on. Friends and siblings get jobs, travel, go to grad school, fall in love. They get married, have babies, and not in any particular order. But for the person with Lyme those fundamental pathways, common fruits of life we for granted, may simply not be an option. Lyme has stolen years.
But enough of spilled tears, right? The wisest thing anyone can do is to start where you are. If you’ve had it with chronic lyme disease symptoms, take heart. Many others have been in your shoes. And they’ve gotten through it. Regardless of the time and opportunities missed because of Lyme, there are many people living happy, loving, productive lives again.
Exactly how the stealthy Lyme bacterial complex works is still under scrutiny. Scientists and doctors, some who are also personally infected with Lyme disease, such as Dr. Eva Sapi and veterinarian, Lyme and immunology expert Dr. Scott Taylor, toil to understand and find a cure for Lyme. One thing we know for certain is that Lyme is an inflammatory disease, and chronic inflammation is the root cause of many life threatening conditions, including Lyme.
Cortico-steroids are commonly given to Lyme patients by doctors without any knowledge or clinical experience in diagnosing chronic Lyme disease symptoms. The faulty logic goes something like this: the patient is experiencing distress, inflammation is causing the distress, steroids (usually Prednisone) will reduce the inflammation and thus reduce the patient’s distress. Not! Predinose will supress the patient’s immune system, causing it to tolerate the Borrelia bacteria instead of attacking and killing it. The Lyme infection is almost guaranteed to get worse, not better.
What can be done about chronic inflammation? Are there safe prescription drugs available, and does your LLMD know about them? What about natural alternatives? Aside from fish oil, are there other products we can take to reduce this silent killer? Does physical exercise really help people dealing with chronic inflammation? Or can it hurt? In my next post, we’ll delve into the various ways to treat chronic inflammation.
Healing from Lyme - Part 3
08/13/11 10:02
For several years, although I had worked my way to the point where I was well enough to work and follow a somewhat normal routine, I still doubted that I’d ever live a life of my own choosing again, where I wouldn’t wake up feeling like I had lead in my veins and my head wasn’t stuffed with cotton candy. Eating nutritious foods and exercising regularly are two important keys for maintaining my healthy state.
If you want to know how not to lie to yourself about your diet, try keeping a journal where you chart everything you eat. In one column write down the food you ate, and make a column next to it where you note how it made you feel. This is a very basic way to figure out exactly what you’re eating, not what you tell yourself you’re eating. Some doctors tell me that they have their patients keep a similar type of journal when they’re trying to identify food allergies.
My diet is made up of mainly vegetables, some tuna and wild Alaskan salmon, raw and stir-fried or steamed veggies & curry, some fruit, legumes, and breads or tortillas. Some of the bread I buy is gluten free and I like the pasta made from brown rice, but I am not particularly bothered by digestive issues, and regular bread works for me too. In general, if it’s wholesome food with not too many ingredients that I can’t pronounce or recognize, it works.
My current favorite food is a wrap. I love wraps because instead of bread, you’re using a thin tortilla, and you can pack them with all sorts of veggies and greens. Stir-fry is good for that too. A lot of vegetables taste excellent in a wrap or a stir-fry that aren’t that delectable when eaten raw or steamed. I don’t generally drink alcohol or eat sugar, although I will indulge occasionally in a beer or cookies, but not often. Alcohol and sugar pull the wool over my eyes. Literally. When I drink or pig out on sugary things I get Lymie. It’s awful to experience Lyme brain again. It’s so wonderful and amazing to have a clear head again, why go there?
I know you’ve heard this a million times, but remember to drink enough water! Liquids are needed to assist the lymph system. I drink water or tea all day long. Green, not black. Black makes me jittery. Coffee only as a treat very infrequently. Tea is alkaline, coffee is acidic and drinking it tends to make me feel chilly. Tea doesn’t do that.
Lately I’ve been drinking a lot of tea made from bamboo leaves. The bamboo leaf tea has about 350 mgs of silica per cup, it tastes great and also helps me sleep. This isn’t technically a real tea. It’s a tisane, or an infusion. Bamboo has the highest amount of silica, a basic mineral that our bodies slough off constantly in the form of dead skin cells, hair, and nail trimmings. Silica is the main ingredient in collagen, which is so essential to rebuild as collagen is destroyed by the Lyme bacteria.
Especially as we get older we need to be mindful of getting enough silica to maintain the levels we need for healthy hair, skin, nails and bones. Studies are showing that silica is the body’s delivery system for calcium. So if you have enough silica in your diet, the calcium can be delivered to the organs properly. As an interesting side note, studies are also showing that this tea can pull out the aluminum in the body and brain. Researchers are intrigued by this finding, and it may be quite useful in cases of Alzheimer’s.
Smoothies are a treat and a regular part of my diet. Delicious, fresh smoothies made of rice milk, berries, a banana and green food powder are very satisfying. Sometimes I put in protein powder if I’ve been working out particularly hard.
I’ve made other life style changes. The main one is that now I exercise religiously. I used to just dance and walk for exercise, but I wasn’t doing either with any sort of regularity. If it happened, it happened. Then about two years into my healing, my shoulder started to freeze up. I was so frustrated, because I was working really hard to clear up the nasty neurological, skin and heart problems I was having, and had begun to track some very good progress. Then one day I realized that I couldn’t move my shoulder and it was painful. It was disheartening. My partner suggested that I try some exercises, in particular push-ups. Hated those push-ups at first, but I was determined to fix this without drugs, and I did. It took about two years, but now my shoulder gives me very little trouble and I have full range of movement. That was the beginning of my now-regular exercise phase. I love working out now, but at first it was difficult. I hadn’t realized how out of shape I had gotten from being sick, and from my work life style, which is sitting at a computer all day (can you relate?).
I used an exercise CD at home for about a year before I had the nerve to join the Y and exercise in front of others. Then I decided to join a private gym that had something called a kinesis wall. Essentially, the kinesis wall is an apparatus with several stations that enable the user to get a rigorous, core-strengthening workout. Very much like Pilates. I took a weekly class with a very skilled coach, which got me started off on the right foot. I recommend classes instead of private coaching if you want to save some money. They’re fun, and also you meet other people, great for team spirit and camaraderie.
I’m fortunate in that I work at home. For the past 7 years I’ve been in charge of my own work schedule. That has been extremely helpful. If I’m honestly too tired to work I can take a nap. I can also stay close to the bathroom, which helps when you drink so much water.
My heart goes out to everyone who is suffering with Lyme and has to maintain a job where they have to leave the house every day. This can be a bear of an illness, and that life style can be merciless. If that is your situation, see if you can look into telecommuting, even part of the week. Staggering your work hours so you aren’t dealing with bad traffic patterns, a real stress-inducer, can help a little bit too.
So that’s where I’m at currently. Please tell me if any of this resonates, or helps to hear, or if you have an idea that you think could benefit others healing from Lyme. Do you keep a food journal, or an exercise journal? I’d love to hear about your journey and your results.
If you want to know how not to lie to yourself about your diet, try keeping a journal where you chart everything you eat. In one column write down the food you ate, and make a column next to it where you note how it made you feel. This is a very basic way to figure out exactly what you’re eating, not what you tell yourself you’re eating. Some doctors tell me that they have their patients keep a similar type of journal when they’re trying to identify food allergies.
My diet is made up of mainly vegetables, some tuna and wild Alaskan salmon, raw and stir-fried or steamed veggies & curry, some fruit, legumes, and breads or tortillas. Some of the bread I buy is gluten free and I like the pasta made from brown rice, but I am not particularly bothered by digestive issues, and regular bread works for me too. In general, if it’s wholesome food with not too many ingredients that I can’t pronounce or recognize, it works.
My current favorite food is a wrap. I love wraps because instead of bread, you’re using a thin tortilla, and you can pack them with all sorts of veggies and greens. Stir-fry is good for that too. A lot of vegetables taste excellent in a wrap or a stir-fry that aren’t that delectable when eaten raw or steamed. I don’t generally drink alcohol or eat sugar, although I will indulge occasionally in a beer or cookies, but not often. Alcohol and sugar pull the wool over my eyes. Literally. When I drink or pig out on sugary things I get Lymie. It’s awful to experience Lyme brain again. It’s so wonderful and amazing to have a clear head again, why go there?
I know you’ve heard this a million times, but remember to drink enough water! Liquids are needed to assist the lymph system. I drink water or tea all day long. Green, not black. Black makes me jittery. Coffee only as a treat very infrequently. Tea is alkaline, coffee is acidic and drinking it tends to make me feel chilly. Tea doesn’t do that.
Lately I’ve been drinking a lot of tea made from bamboo leaves. The bamboo leaf tea has about 350 mgs of silica per cup, it tastes great and also helps me sleep. This isn’t technically a real tea. It’s a tisane, or an infusion. Bamboo has the highest amount of silica, a basic mineral that our bodies slough off constantly in the form of dead skin cells, hair, and nail trimmings. Silica is the main ingredient in collagen, which is so essential to rebuild as collagen is destroyed by the Lyme bacteria.
Especially as we get older we need to be mindful of getting enough silica to maintain the levels we need for healthy hair, skin, nails and bones. Studies are showing that silica is the body’s delivery system for calcium. So if you have enough silica in your diet, the calcium can be delivered to the organs properly. As an interesting side note, studies are also showing that this tea can pull out the aluminum in the body and brain. Researchers are intrigued by this finding, and it may be quite useful in cases of Alzheimer’s.
Smoothies are a treat and a regular part of my diet. Delicious, fresh smoothies made of rice milk, berries, a banana and green food powder are very satisfying. Sometimes I put in protein powder if I’ve been working out particularly hard.
I’ve made other life style changes. The main one is that now I exercise religiously. I used to just dance and walk for exercise, but I wasn’t doing either with any sort of regularity. If it happened, it happened. Then about two years into my healing, my shoulder started to freeze up. I was so frustrated, because I was working really hard to clear up the nasty neurological, skin and heart problems I was having, and had begun to track some very good progress. Then one day I realized that I couldn’t move my shoulder and it was painful. It was disheartening. My partner suggested that I try some exercises, in particular push-ups. Hated those push-ups at first, but I was determined to fix this without drugs, and I did. It took about two years, but now my shoulder gives me very little trouble and I have full range of movement. That was the beginning of my now-regular exercise phase. I love working out now, but at first it was difficult. I hadn’t realized how out of shape I had gotten from being sick, and from my work life style, which is sitting at a computer all day (can you relate?).
I used an exercise CD at home for about a year before I had the nerve to join the Y and exercise in front of others. Then I decided to join a private gym that had something called a kinesis wall. Essentially, the kinesis wall is an apparatus with several stations that enable the user to get a rigorous, core-strengthening workout. Very much like Pilates. I took a weekly class with a very skilled coach, which got me started off on the right foot. I recommend classes instead of private coaching if you want to save some money. They’re fun, and also you meet other people, great for team spirit and camaraderie.
I’m fortunate in that I work at home. For the past 7 years I’ve been in charge of my own work schedule. That has been extremely helpful. If I’m honestly too tired to work I can take a nap. I can also stay close to the bathroom, which helps when you drink so much water.
My heart goes out to everyone who is suffering with Lyme and has to maintain a job where they have to leave the house every day. This can be a bear of an illness, and that life style can be merciless. If that is your situation, see if you can look into telecommuting, even part of the week. Staggering your work hours so you aren’t dealing with bad traffic patterns, a real stress-inducer, can help a little bit too.
So that’s where I’m at currently. Please tell me if any of this resonates, or helps to hear, or if you have an idea that you think could benefit others healing from Lyme. Do you keep a food journal, or an exercise journal? I’d love to hear about your journey and your results.
Healing from Lyme - Part 2
08/06/11 12:08
Before receiving the correct diagnosis for Lyme and coinfections, a dermatologist had put me on Prednisone to try and control my severe skin rashes. This was a nearly fatal mistake on his part. It marked a crisis point in my illness. I also received lectures by this doctor about how I “really should stop scratching myself raw while I was sleeping.” I wasn’t sleeping, and I knew he was wrong. The skin on my body wasn’t opening up due to scratching it. It was infuriating not to be heard.
He considered me a nuisance, because at each appointment I’d open my notebook and read another question from my list, which he wouldn’t answer. Bless his heart, as we say in the South. He wouldn’t even look me in the eye or talk to me. When he had something to say he addressed my mother instead, who drove me to these appointments and helped me get through them.
A doctor worth her salt who suspects that a Lyme infection is underlying will be the first to tell you that corticosteroids such as Prednisone are contraindicated. That means they are precisely what you do not want to do. The dermatologist who wouldn’t listen to my questions seemed to have no professional curiosity about my skin rash. If he’d looked into it, he might have saved me several terrible months of pain, and perhaps even several years of cognitive disorientation. Prednisone will replicate the Lyme bacteria. It will drive the bacterial complex further into the body and across the blood-brain barrier. That is what had happened to me.
In spite of the fact that my intuition urged me not to, I continued taking the Prednisone for 16 days (he’d prescribed it for 20). On the 16th day, I made the decision to stop although the dermatologist, and a couple of my dear friends, warned me not to. The doctor must know what he’s doing, they said. You’re seriously ill and you should listen to him. The mental stress and anxiety caused by going through this process, on top of the continuous physical pain, was nearly unbearable.
We’re conditioned to listen to our doctors, take the medicine they prescribe, and to take what they say as the word of God. From my current vantage point, I look back and wonder what on earth I was thinking. How could I have thought that this guy was helping me? He kept me coming back because he wanted to biopsy my skin rashes. But the rashes lingered and didn’t improve. He was ready to perform a punch biopsy on my raw skin. I’m grateful that he kept waiting for the rash to improve before he did. He knew that a biopsy would likely make the rash worse. Partly because I so feared having that punch biopsy and partly because I felt like I was in the enemy’s camp when I went to his office, I simply stopped going.
That’s when I found a naturopath, Tod Thoring, in Arroyo Grande, CA. It was like being introduced to an angel, and it was another turning point in my long battle. This time it was a positive one. This was the beginning my new life. I’d found Dr Thoring and lucked into a situation where he and a very smart group of Lyme experts were putting their heads together to try and help people in dire straits, like me.
Today I consider myself lucky in every way. But that said, I know I’ve also battled my symptoms with every ounce of strength I had. And without the support and love of my partner and my mother, I wouldn’t have made it. I’m ashamed to say this, but when I was in the acute stage, if I’d had a gun, I probably would have pulled the trigger. The pain in my skin and muscles was so severe, so constant and unbearable. Instead of letting me hurt myself, my partner handed me a paintbrush and some tubes of paint. He supported me emotionally as well as he could, and set me on a path to healing.
During the acute stage some of my other symptoms were insomnia, hypersensitivity to light (especially florescent) and to being touched. I couldn’t stand or walk without holding onto a chair or a wall. I was dizzy all the time. My brain wasn’t functioning well enough to work or write, and when reading, comprehending even a simple paragraph was an insurmountable challenge. During this time, in spite of my state, I began interviewing doctors who I thought might have some clue about how to treat Lyme disease. I was determined to help other people like me who I knew were out there, going through this horrible process and needing to hear what the doctors had to say about it.
Navigating the technical equipment and recording the interviews was hugely challenging. Once, I could barely hear the doctor I was speaking to, and couldn’t figure out how to fix it. I strained to hear her through the entire session while her voice came through like a little mouse in my ear. It wasn’t until after I thanked her and hung up that I realized I had put my earphone in backwards.
I ached to be held and comforted, but couldn’t stand to be touched. I felt extremely lonely and isolated. I had horrible mood swings. I hallucinated. Once, while in the bathroom, I heard my father say my name. He died when I was 15 years old, more than 30 years ago, but I instantly recognized his voice. I heard my telephone ringing and a little girl on the other end asking for someone who didn’t live there. That particular hallucination happened a few different times. Each time, the calls upset me enormously, and she always called when I was home alone. I couldn’t understand why this little girl kept calling back, insisting on talking with someone who didn’t live there. Weeks later, I realized that I’d hallucinated her and all the conversations we’d had.
In Part 3 I’ll outline my diet and exercise routine. I’ll also pass along advice and suggestions from some amazing individuals. You’ll hear more about the Lyme success stories I’ve heard along the way.
He considered me a nuisance, because at each appointment I’d open my notebook and read another question from my list, which he wouldn’t answer. Bless his heart, as we say in the South. He wouldn’t even look me in the eye or talk to me. When he had something to say he addressed my mother instead, who drove me to these appointments and helped me get through them.
A doctor worth her salt who suspects that a Lyme infection is underlying will be the first to tell you that corticosteroids such as Prednisone are contraindicated. That means they are precisely what you do not want to do. The dermatologist who wouldn’t listen to my questions seemed to have no professional curiosity about my skin rash. If he’d looked into it, he might have saved me several terrible months of pain, and perhaps even several years of cognitive disorientation. Prednisone will replicate the Lyme bacteria. It will drive the bacterial complex further into the body and across the blood-brain barrier. That is what had happened to me.
In spite of the fact that my intuition urged me not to, I continued taking the Prednisone for 16 days (he’d prescribed it for 20). On the 16th day, I made the decision to stop although the dermatologist, and a couple of my dear friends, warned me not to. The doctor must know what he’s doing, they said. You’re seriously ill and you should listen to him. The mental stress and anxiety caused by going through this process, on top of the continuous physical pain, was nearly unbearable.
We’re conditioned to listen to our doctors, take the medicine they prescribe, and to take what they say as the word of God. From my current vantage point, I look back and wonder what on earth I was thinking. How could I have thought that this guy was helping me? He kept me coming back because he wanted to biopsy my skin rashes. But the rashes lingered and didn’t improve. He was ready to perform a punch biopsy on my raw skin. I’m grateful that he kept waiting for the rash to improve before he did. He knew that a biopsy would likely make the rash worse. Partly because I so feared having that punch biopsy and partly because I felt like I was in the enemy’s camp when I went to his office, I simply stopped going.
That’s when I found a naturopath, Tod Thoring, in Arroyo Grande, CA. It was like being introduced to an angel, and it was another turning point in my long battle. This time it was a positive one. This was the beginning my new life. I’d found Dr Thoring and lucked into a situation where he and a very smart group of Lyme experts were putting their heads together to try and help people in dire straits, like me.
Today I consider myself lucky in every way. But that said, I know I’ve also battled my symptoms with every ounce of strength I had. And without the support and love of my partner and my mother, I wouldn’t have made it. I’m ashamed to say this, but when I was in the acute stage, if I’d had a gun, I probably would have pulled the trigger. The pain in my skin and muscles was so severe, so constant and unbearable. Instead of letting me hurt myself, my partner handed me a paintbrush and some tubes of paint. He supported me emotionally as well as he could, and set me on a path to healing.
During the acute stage some of my other symptoms were insomnia, hypersensitivity to light (especially florescent) and to being touched. I couldn’t stand or walk without holding onto a chair or a wall. I was dizzy all the time. My brain wasn’t functioning well enough to work or write, and when reading, comprehending even a simple paragraph was an insurmountable challenge. During this time, in spite of my state, I began interviewing doctors who I thought might have some clue about how to treat Lyme disease. I was determined to help other people like me who I knew were out there, going through this horrible process and needing to hear what the doctors had to say about it.
Navigating the technical equipment and recording the interviews was hugely challenging. Once, I could barely hear the doctor I was speaking to, and couldn’t figure out how to fix it. I strained to hear her through the entire session while her voice came through like a little mouse in my ear. It wasn’t until after I thanked her and hung up that I realized I had put my earphone in backwards.
I ached to be held and comforted, but couldn’t stand to be touched. I felt extremely lonely and isolated. I had horrible mood swings. I hallucinated. Once, while in the bathroom, I heard my father say my name. He died when I was 15 years old, more than 30 years ago, but I instantly recognized his voice. I heard my telephone ringing and a little girl on the other end asking for someone who didn’t live there. That particular hallucination happened a few different times. Each time, the calls upset me enormously, and she always called when I was home alone. I couldn’t understand why this little girl kept calling back, insisting on talking with someone who didn’t live there. Weeks later, I realized that I’d hallucinated her and all the conversations we’d had.
In Part 3 I’ll outline my diet and exercise routine. I’ll also pass along advice and suggestions from some amazing individuals. You’ll hear more about the Lyme success stories I’ve heard along the way.
Healing from Lyme - Part 1
07/30/11 10:55
Q. I noticed in the article you said that your symptoms are gone and your health vastly improved. What did you do to get to that point and how long did it take you?
A. My healing journey is still ongoing, and since Lyme changed my perspective on pretty much everything, I’m always vigilant about the consequences of my everyday choices. I’ve learned how critical it is, when dealing with any serious disease, to approach healing from as many directions as possible. This is called an ‘integral’ approach and there are four general life areas that come under consideration. I’ll get into all four areas in this multi-part post.
First, I’ll give you the general picture of the medicines and supplements I took and still take. To begin with, my doctor put me on a treatment protocol of antibiotics including Omnicef and Zithromax. He also started me on a regime of homeopathics and vitamin supplements to support my immune system. Here is a partial list of the supplements that I took everyday for the first year:
probiotics
cod liver oil
bromelain
thymucin
lithium
dermaliq
CoQ10
quercetin/bromelain
copper
garlic
vit E
vit C
MSM
pekana
L lysine
Noni
liquid chlorophyll
zinc
psyllium
After six months, my doctor recommended that I stop the oral antibiotics and begin IV treatment with the antibiotic Rocephin. I had been through a rough time physically and emotionally, and though I felt better, I didn’t feel anywhere near 100%. In addition, I didn’t have health insurance, and I understood the cost of the IV and the new antibiotics would be around $20,000. Financially, my illness had already set me back in two fundamental ways. First, I hadn’t been able to work full time. And second, I had spent a great deal of money on the medicine and supplements needed already. It was a pretty disturbing place to be. My doctor was a naturopath, and typically did not treat illness with antibiotics. I knew my condition must be very serious if he thought I needed the Rocephin.
I had to decide what to do. After agonizing over it for a week or so, I chose not to go with the IV, but decided to start the Cowden protocol. There was no lapse of time between ending my oral antibiotic protocol and beginning the Cowden, an alternative protocol that I had researched, consisting of Samento, Burbur, Banderol and a number of other herbal tinctures that originate in the Amazon. These native plants have been used to treat malaria for a thousand years or more. I felt like I could make it work.
The Cowden routine worked very effectively for me, and although it took a long time (several years) I’m happy with the results. The cost, while not cheap, was a fraction of what the Rocephin IV treatment would have been. Currently I’m on a break from the Cowden protocol. About a year ago I tapered off of it, and began taking a low dose (3 drops 3 times daily) of teasel root tincture which I still take. I made this decision after reading about it and interviewing a couple of herbalist/physicians who had found it to be immensely helpful for their patients.
It took me six years to get to the point where I feel normal again. It wasn’t a quick trip. More like an excruciatingly slow journey. Normal, to me, means that I can enjoy my family and friends and take time for them. I can pursue my personal and professional goals and work long days if I so choose without crashing, I can sleep through the night every night, and I can exercise rigorously every day. I can make plans for the future.
In my opinion, exercise and diet are more important than anybody will tell you. I consider Lance Armstrong and all the athletes I’ve had the honor of interviewing for our Lyme success stories to be my solid gold role models.
Next, I’ll give a bit of backstory and talk about what happened before I found my naturopath. What can happen when the doctors don’t know about Lyme disease and prescribe the wrong medicine?
A. My healing journey is still ongoing, and since Lyme changed my perspective on pretty much everything, I’m always vigilant about the consequences of my everyday choices. I’ve learned how critical it is, when dealing with any serious disease, to approach healing from as many directions as possible. This is called an ‘integral’ approach and there are four general life areas that come under consideration. I’ll get into all four areas in this multi-part post.
First, I’ll give you the general picture of the medicines and supplements I took and still take. To begin with, my doctor put me on a treatment protocol of antibiotics including Omnicef and Zithromax. He also started me on a regime of homeopathics and vitamin supplements to support my immune system. Here is a partial list of the supplements that I took everyday for the first year:
probiotics
cod liver oil
bromelain
thymucin
lithium
dermaliq
CoQ10
quercetin/bromelain
copper
garlic
vit E
vit C
MSM
pekana
L lysine
Noni
liquid chlorophyll
zinc
psyllium
After six months, my doctor recommended that I stop the oral antibiotics and begin IV treatment with the antibiotic Rocephin. I had been through a rough time physically and emotionally, and though I felt better, I didn’t feel anywhere near 100%. In addition, I didn’t have health insurance, and I understood the cost of the IV and the new antibiotics would be around $20,000. Financially, my illness had already set me back in two fundamental ways. First, I hadn’t been able to work full time. And second, I had spent a great deal of money on the medicine and supplements needed already. It was a pretty disturbing place to be. My doctor was a naturopath, and typically did not treat illness with antibiotics. I knew my condition must be very serious if he thought I needed the Rocephin.
I had to decide what to do. After agonizing over it for a week or so, I chose not to go with the IV, but decided to start the Cowden protocol. There was no lapse of time between ending my oral antibiotic protocol and beginning the Cowden, an alternative protocol that I had researched, consisting of Samento, Burbur, Banderol and a number of other herbal tinctures that originate in the Amazon. These native plants have been used to treat malaria for a thousand years or more. I felt like I could make it work.
The Cowden routine worked very effectively for me, and although it took a long time (several years) I’m happy with the results. The cost, while not cheap, was a fraction of what the Rocephin IV treatment would have been. Currently I’m on a break from the Cowden protocol. About a year ago I tapered off of it, and began taking a low dose (3 drops 3 times daily) of teasel root tincture which I still take. I made this decision after reading about it and interviewing a couple of herbalist/physicians who had found it to be immensely helpful for their patients.
It took me six years to get to the point where I feel normal again. It wasn’t a quick trip. More like an excruciatingly slow journey. Normal, to me, means that I can enjoy my family and friends and take time for them. I can pursue my personal and professional goals and work long days if I so choose without crashing, I can sleep through the night every night, and I can exercise rigorously every day. I can make plans for the future.
In my opinion, exercise and diet are more important than anybody will tell you. I consider Lance Armstrong and all the athletes I’ve had the honor of interviewing for our Lyme success stories to be my solid gold role models.
Next, I’ll give a bit of backstory and talk about what happened before I found my naturopath. What can happen when the doctors don’t know about Lyme disease and prescribe the wrong medicine?
Link between Chronic Lyme and CFIDS
02/26/11 14:19
Even well into my so-called ‘normal’ post-Lyme life, there are days, such as this, when regular routine tasks -- preparing and cleaning up after a meal, writing an email, grocery shopping, seem unbearably exhausting. Friends I confide in say they have the same feelings and that it comes and goes. We attribute this to a variety of causes, hormones, diet, children, our jobs and just plain ol’ getting older. Illness is also suspect, especially for those of us who have battled with fatigue due to Chronic Lyme (aka neurologic post-Lyme), and/or the syndrome we call Chronic fatigue.
More studies are needed to examine the relationship between these two potentially devastating diseases. A dear friend and neighbor of mine, an aging Southern writer appeared astonishingly frail and weak, but whose wicked sense of humor never rested, died last year after struggling for many years with CFIDS. In spite of her failing health it always seemed that her role in our friendship was to make me laugh. She succeeded. Mine was to give her news about the steps being taken to find a cure to what ailed us. If I could get her updated address, I’d email this article to her this morning:
Possible links between Chronic Lyme and Chronic Fatigue Syndrome, are under scrutiny of experts including Steven E Schutzer, MD, and Brian Fallon, MD, the Director of the Lyme and Tick-Borne Diseases Research Center at Columbia University.
Scientists have discovered proteins in spinal fluid that can distinguish people with two mysterious illnesses that mimic each other — chronic fatigue syndrome and a kind of chronic Lyme disease.
Wednesday's study is small and needs verification. But specialists called it a promising start at clearing some of the confusion surrounding two illnesses with similar symptoms and no good means of diagnosis.
"It's a very important first step," said Dr. Suzanne Vernon of the Chronic Fatigue and Immune Dysfunction Syndrome Association of America.
Lyme disease usually is cured with antibiotics, but some patients report pain, fatigue and memory or other neurologic problems that linger for months or years after treatment ends. This post-treatment Lyme disease shares symptoms that characterize chronic fatigue syndrome.
The new study analyzed spinal fluid from 25 of those chronic Lyme patients, 43 people diagnosed with chronic fatigue syndrome and 11 healthy people. Using a special high-powered technology, researchers detected more than 2,500 proteins in each group.
Read the abstract of the study here.
More studies are needed to examine the relationship between these two potentially devastating diseases. A dear friend and neighbor of mine, an aging Southern writer appeared astonishingly frail and weak, but whose wicked sense of humor never rested, died last year after struggling for many years with CFIDS. In spite of her failing health it always seemed that her role in our friendship was to make me laugh. She succeeded. Mine was to give her news about the steps being taken to find a cure to what ailed us. If I could get her updated address, I’d email this article to her this morning:
Possible links between Chronic Lyme and Chronic Fatigue Syndrome, are under scrutiny of experts including Steven E Schutzer, MD, and Brian Fallon, MD, the Director of the Lyme and Tick-Borne Diseases Research Center at Columbia University.
Scientists have discovered proteins in spinal fluid that can distinguish people with two mysterious illnesses that mimic each other — chronic fatigue syndrome and a kind of chronic Lyme disease.
Wednesday's study is small and needs verification. But specialists called it a promising start at clearing some of the confusion surrounding two illnesses with similar symptoms and no good means of diagnosis.
"It's a very important first step," said Dr. Suzanne Vernon of the Chronic Fatigue and Immune Dysfunction Syndrome Association of America.
Lyme disease usually is cured with antibiotics, but some patients report pain, fatigue and memory or other neurologic problems that linger for months or years after treatment ends. This post-treatment Lyme disease shares symptoms that characterize chronic fatigue syndrome.
The new study analyzed spinal fluid from 25 of those chronic Lyme patients, 43 people diagnosed with chronic fatigue syndrome and 11 healthy people. Using a special high-powered technology, researchers detected more than 2,500 proteins in each group.
Read the abstract of the study here.
Genomes of 13 strains Lyme bugs mapped
01/09/11 12:22
Lyme can sure be a complicated puzzle. For example, knowing that Lyme is an inflammatory disease is one thing. But knowing what to do about that is quite another. My personal approach often feels scattershot: add turmeric to my supplemental arsenal. Take daily doses of quercetin. Drink water, exercise, avoid sugar. But doctors are far from being in agreement about therapies, and health websites and magazines are stuffed with pop advice. Some is helpful, some is contradictory or otherwise confusing.
But what can medical science tell us about dealing with chronic inflammation? There is actually good news in this area from a recent study.
Researchers have mapped the genomes of the 13 strains of bacterium that play the most prominent role in causing Lyme disease. This project may help us understand why a significant number of Lyme patients suffer with a chronic inflammatory response. The study may yield some answers to the problem of inflammation, an auto-immune response. More importantly, it may give us clues about what to do about it.
Apparently the discovery is exciting Lyme researchers because they have found that proteins on the surface of the Borrelia bacterium can signal the immune system by attaching to receptors on the surface of white blood cells. The white blood cells are the ones responsible for fighting off infection.
That tiny attachment triggers production of an external protein that traps and stops other white blood cells from controlling the production of antibodies. When this occurs, antibodies are churned out in large numbers, often non-specifically, which results in inflammation throughout the body.
Researchers conclude that through therapeutic intervention they may be able to detach that external protein, and thereby suppress the inflammatory response.
Here is the abstract of the article, online in the Journal of Bacteriology:
Borrelia burgdorferi is a causative agent of Lyme disease in North America and Eurasia. The first complete genome sequence of B. burgdorferi strain 31, available for more than a decade, has assisted research on the pathogenesis of Lyme disease. Because a single genome sequence is not sufficient to understand the relationship between genotypic and geographic variation and disease phenotype, we determined the whole genome sequences of 13 additional B. burgdorferi isolates that span the range of natural variation. These sequences should allow improved understanding of pathogenesis and provide a foundation for novel detection, diagnosis, and prevention strategies.
Consider the spirochete: a minute, ancient creature. And yet it can cause so much distress. Something so tiny and simple can wreck such collosol havoc. Now perhaps the discovery of this microscopic external protein, only recently become visible to scientists, can help bring about healing.
But what can medical science tell us about dealing with chronic inflammation? There is actually good news in this area from a recent study.
Researchers have mapped the genomes of the 13 strains of bacterium that play the most prominent role in causing Lyme disease. This project may help us understand why a significant number of Lyme patients suffer with a chronic inflammatory response. The study may yield some answers to the problem of inflammation, an auto-immune response. More importantly, it may give us clues about what to do about it.
Apparently the discovery is exciting Lyme researchers because they have found that proteins on the surface of the Borrelia bacterium can signal the immune system by attaching to receptors on the surface of white blood cells. The white blood cells are the ones responsible for fighting off infection.
That tiny attachment triggers production of an external protein that traps and stops other white blood cells from controlling the production of antibodies. When this occurs, antibodies are churned out in large numbers, often non-specifically, which results in inflammation throughout the body.
Researchers conclude that through therapeutic intervention they may be able to detach that external protein, and thereby suppress the inflammatory response.
Here is the abstract of the article, online in the Journal of Bacteriology:
Borrelia burgdorferi is a causative agent of Lyme disease in North America and Eurasia. The first complete genome sequence of B. burgdorferi strain 31, available for more than a decade, has assisted research on the pathogenesis of Lyme disease. Because a single genome sequence is not sufficient to understand the relationship between genotypic and geographic variation and disease phenotype, we determined the whole genome sequences of 13 additional B. burgdorferi isolates that span the range of natural variation. These sequences should allow improved understanding of pathogenesis and provide a foundation for novel detection, diagnosis, and prevention strategies.
Consider the spirochete: a minute, ancient creature. And yet it can cause so much distress. Something so tiny and simple can wreck such collosol havoc. Now perhaps the discovery of this microscopic external protein, only recently become visible to scientists, can help bring about healing.
Has Lyme changed your mind?
01/01/11 13:05
Every New Year's Eve I write down my goals for the New Year. Written lists have an uncanny way of materializing -- perhaps not as soon as we would like, or in the way we imagined, but all in all the act of writing down your goals for the coming year does seem to influence your ability to achieve them.
I also write down my goals for each month, putting them in a journal dedicated for that purpose only. I got my journal out today and looked it over, scanning to see the trajectory of the last five years since I've been dealing with Lyme.
My goals were strikingly immediate in the beginning, and health naturally became my number one priority. In the past they'd had everything to do with professional, financial, and relationship aims. But starting in 2005 my written goals became narrow and specifically focused on getting healthy. Common actions and abilities I once took completely for granted -- thinking clearly, talking without stammering, walking around the block, putting in a good day's work, sleeping peacefully, or waking up rested -- it all seemed very hard to imagine.
From the perspective of today, I look back at that time with more than a little fear. 'What if' questions start gathering in my head like storm clouds. What if I ever get that sick again? No matter how far behind you the illness gets, once a powerful antagonist like Lyme has twisted you like a rag and hung you out to dry, one is never the same. Revisiting my deepest wishes I'm amazed at how much faith I had managed to express. I kept my focus on positive affirmations. One month is a simple list of 10 goals, each a variation on the same theme of trust in my body's innate wisdom, in its ability to heal.
Please do not misunderstand. I'm not saying that I believe I healed from Lyme because I wrote down my goals. The point is, writing them down strengthened my resolve to work hard at healing. Going through the long dark passage of disease and emerging on the other side is one heck of a life changing experience.
The brain and all the systems of the body can be affected by the Lyme bacterial complex. But even when the brain has been affected there is hope. Further, there is the miracle of transcending brain changes and tackling new studies, such as learning a new language, an instrument or sport.
For proof and a shot of inspiration, read this New York Times article by Oliver Sacks:
This year, change your mind.
I also write down my goals for each month, putting them in a journal dedicated for that purpose only. I got my journal out today and looked it over, scanning to see the trajectory of the last five years since I've been dealing with Lyme.
My goals were strikingly immediate in the beginning, and health naturally became my number one priority. In the past they'd had everything to do with professional, financial, and relationship aims. But starting in 2005 my written goals became narrow and specifically focused on getting healthy. Common actions and abilities I once took completely for granted -- thinking clearly, talking without stammering, walking around the block, putting in a good day's work, sleeping peacefully, or waking up rested -- it all seemed very hard to imagine.
From the perspective of today, I look back at that time with more than a little fear. 'What if' questions start gathering in my head like storm clouds. What if I ever get that sick again? No matter how far behind you the illness gets, once a powerful antagonist like Lyme has twisted you like a rag and hung you out to dry, one is never the same. Revisiting my deepest wishes I'm amazed at how much faith I had managed to express. I kept my focus on positive affirmations. One month is a simple list of 10 goals, each a variation on the same theme of trust in my body's innate wisdom, in its ability to heal.
Please do not misunderstand. I'm not saying that I believe I healed from Lyme because I wrote down my goals. The point is, writing them down strengthened my resolve to work hard at healing. Going through the long dark passage of disease and emerging on the other side is one heck of a life changing experience.
The brain and all the systems of the body can be affected by the Lyme bacterial complex. But even when the brain has been affected there is hope. Further, there is the miracle of transcending brain changes and tackling new studies, such as learning a new language, an instrument or sport.
For proof and a shot of inspiration, read this New York Times article by Oliver Sacks:
This year, change your mind.
I'm Dreaming of a Healthy Christmas...
12/18/10 14:23
Just like the ones I used to know.
Holidays are a mixed bag, aren't they? On one hand, they offer a break from routine workday (or sick-day) stress. On the other, they can cause even more stress. First, there's the family get-togethers, which wouldn't be so bad except it means putting up with Uncle Fred or cousin Irma, who want to engage you in an intense conversation about your Lyme disease symptoms (which you're trying unsuccessfully to put out of your mind for one evening), or they are insisting that you immediately make an appointment to see this really amazing doctor they found because (although they have done no research themselves) they don't believe your doctor is treating you correctly.
Or, and this is the more likely scenario, your friends and family are thrilled to see you looking pretty good, walking upright, tracking conversation with ease, so they totally ignore the fact that you are indeed sick. They proceed to put the whole year (or three, or five, etc.) out of their minds completely. Like a bad marriage, your illness gets pushed into the past so everybody in the room can feel more comfortable. Your mother or your dearest friend then proceeds to pour you a glass of wine, pass the See's chocolate, and swoon over little Chloe's sugar cookies which are decorated with more candy than you've seen all year.
You may be able to politely resist the alcohol and pass on the cookie tray, but with a sigh you glance over the traditional holiday foods piled high on the plate your dear ones have placed in front of you. And it smells so good. If you've been making a sincere effort to heal, you have been good for months. No sugar, no wine, no Girl Scout cookies for goodness sake. Why not indulge a little, you tell yourself. However, as anybody with Lyme can tell you, one night of sweet indulgence on sugar or alcohol can zap your strength for many days, bring on a dismal case of brain fog and trigger chronic symptoms such as skin rashes, headaches, and more.
As strict as I am with myself, even I find it difficult to resist holiday temptations. A colleague wanted to meet downtown at a local brewery the other day. I had my last beer on Halloween and it brought about a skin rash on my fingers and hands, my weakest spot and most pernicious symptom. I am not drinking beer anymore. And wine, which is said to be good for you, is still alcohol, it's still sugar, and although it's a lovely thing to share a toast with your dear ones over the holidays it can be done with mineral water. Discipline? Yes, you need it in spades. Determination too. But tell me, what more motivating factor do you need than your own recent experience with Lyme symptoms?
My life is no less joyful or rich because I am not sipping wine, ordering a slice of heavenly Tiramisu, or dipping into the candy bowl after dinner. In fact it's just the opposite. The quality and beauty of my life intensifies the more I tend to my health. This Christmas I'll lift my glass and toast to my loved ones' health. Perhaps it's a cliche that if you have your health you have everything, but it's true.
Happy holidays, everybody. May you have fulfilling work, understanding relatives, true friends, and a clear mind and healthy heart so you may enjoy them all. "Wisdom is to the soul what health is to the body."
Holidays are a mixed bag, aren't they? On one hand, they offer a break from routine workday (or sick-day) stress. On the other, they can cause even more stress. First, there's the family get-togethers, which wouldn't be so bad except it means putting up with Uncle Fred or cousin Irma, who want to engage you in an intense conversation about your Lyme disease symptoms (which you're trying unsuccessfully to put out of your mind for one evening), or they are insisting that you immediately make an appointment to see this really amazing doctor they found because (although they have done no research themselves) they don't believe your doctor is treating you correctly.
Or, and this is the more likely scenario, your friends and family are thrilled to see you looking pretty good, walking upright, tracking conversation with ease, so they totally ignore the fact that you are indeed sick. They proceed to put the whole year (or three, or five, etc.) out of their minds completely. Like a bad marriage, your illness gets pushed into the past so everybody in the room can feel more comfortable. Your mother or your dearest friend then proceeds to pour you a glass of wine, pass the See's chocolate, and swoon over little Chloe's sugar cookies which are decorated with more candy than you've seen all year.
You may be able to politely resist the alcohol and pass on the cookie tray, but with a sigh you glance over the traditional holiday foods piled high on the plate your dear ones have placed in front of you. And it smells so good. If you've been making a sincere effort to heal, you have been good for months. No sugar, no wine, no Girl Scout cookies for goodness sake. Why not indulge a little, you tell yourself. However, as anybody with Lyme can tell you, one night of sweet indulgence on sugar or alcohol can zap your strength for many days, bring on a dismal case of brain fog and trigger chronic symptoms such as skin rashes, headaches, and more.
As strict as I am with myself, even I find it difficult to resist holiday temptations. A colleague wanted to meet downtown at a local brewery the other day. I had my last beer on Halloween and it brought about a skin rash on my fingers and hands, my weakest spot and most pernicious symptom. I am not drinking beer anymore. And wine, which is said to be good for you, is still alcohol, it's still sugar, and although it's a lovely thing to share a toast with your dear ones over the holidays it can be done with mineral water. Discipline? Yes, you need it in spades. Determination too. But tell me, what more motivating factor do you need than your own recent experience with Lyme symptoms?
My life is no less joyful or rich because I am not sipping wine, ordering a slice of heavenly Tiramisu, or dipping into the candy bowl after dinner. In fact it's just the opposite. The quality and beauty of my life intensifies the more I tend to my health. This Christmas I'll lift my glass and toast to my loved ones' health. Perhaps it's a cliche that if you have your health you have everything, but it's true.
Happy holidays, everybody. May you have fulfilling work, understanding relatives, true friends, and a clear mind and healthy heart so you may enjoy them all. "Wisdom is to the soul what health is to the body."
New Lyme test for neuro symptoms
12/03/10 16:24
Like you, I've devoted a lot of my time and energy to figuring out how on earth to get better. "Be well" is my mantra, and I'm sure I'm not alone here. So when someone points me in the direction of research that's being done in the name of Lyme testing, I'm all ears. Here is something you might be interested in hearing more about as well: a new test for Lyme disease.
As we know, many people sick with a Lyme infection are routinely dismissed by medical doctors who aren't trained in diagnosing or treating Lyme as "crazy," or at best, "exaggerating." This type of reductive response from medical professionals can really sting. Nothing like being kicked while you're down, and from the very people you have turned to for help. I know how it hurts, and I've experienced firsthand the fearsome mental disorientation that this disease can cause.
I remember hearing my (deceased) father clearly saying my name. I jerked my head in the direction of his voice, fully expecting to see him standing next to me. I remember hearing the phone ringing, ringing, ringing, and each time I picked up, a little girl on the other end pleading to talk with someone whose name I did not know, someone who she swore lived there. I recall sitting in a chair all day for one entire day, afraid to move, practically afraid to breathe, for fear that movement would make the utter despair I felt inside even worse. It felt like standing, during an earthquake, on the brink of insanity, where even one small tremor would send me tumbling into the chasm below.
But I wasn't crazy. I had Lyme. I had an infection that was affecting my brain, and that's all. And I have gotten better. I continue to heal, and of course that is also my deepest desire for you. So what about this new test?
Evidently, there are neurological manifestations that have non-neurological root causes. It is important that doctors understand this when dealing with patients who present with neurological difficulties and challenges. The new Lyme test is capable of assessing whether someone has had "an immune response to the Lyme disease bacterium Borrelia burgdorferi and whether the infection is currently active."
The test has been developed by Pharmasan Labs, Inc. in collaboration with NeuroScience, Inc.
From their website:
NeuroScience, Inc., by virtue of its name, has its foundations built on understanding the nervous system. Our understanding of the nervous system has led us to a point where, from a biochemical point of view, we must further consider the role hormones, cytokines, and neurotransmitters play, not as the messengers of individual systems, but rather as parts of a much larger picture. Our goal is to embrace a more global perspective on health that incorporates facets of neurology, immunology, and endocrinology. This newly emerging field has been defined as “neuroimmunology” and it forces us to rethink our approach to health and disease. Our adoption of the principles of neuroimmunology have resulted in an expanded menu of laboratory services that now include a wide spectrum of neurological, endocrinological, and immunological markers.
There are a lot of big words in that paragraph. Don't let them put you off. I think this test, this lab, may be onto something very important here. I'm looking forward to talking with their scientists very soon. Stay tuned for an interview, and meantime read up about their new Lyme test (and how you might use it), on their website.
Be well.
Think positively.
We can get better.
As we know, many people sick with a Lyme infection are routinely dismissed by medical doctors who aren't trained in diagnosing or treating Lyme as "crazy," or at best, "exaggerating." This type of reductive response from medical professionals can really sting. Nothing like being kicked while you're down, and from the very people you have turned to for help. I know how it hurts, and I've experienced firsthand the fearsome mental disorientation that this disease can cause.
I remember hearing my (deceased) father clearly saying my name. I jerked my head in the direction of his voice, fully expecting to see him standing next to me. I remember hearing the phone ringing, ringing, ringing, and each time I picked up, a little girl on the other end pleading to talk with someone whose name I did not know, someone who she swore lived there. I recall sitting in a chair all day for one entire day, afraid to move, practically afraid to breathe, for fear that movement would make the utter despair I felt inside even worse. It felt like standing, during an earthquake, on the brink of insanity, where even one small tremor would send me tumbling into the chasm below.
But I wasn't crazy. I had Lyme. I had an infection that was affecting my brain, and that's all. And I have gotten better. I continue to heal, and of course that is also my deepest desire for you. So what about this new test?
Evidently, there are neurological manifestations that have non-neurological root causes. It is important that doctors understand this when dealing with patients who present with neurological difficulties and challenges. The new Lyme test is capable of assessing whether someone has had "an immune response to the Lyme disease bacterium Borrelia burgdorferi and whether the infection is currently active."
The test has been developed by Pharmasan Labs, Inc. in collaboration with NeuroScience, Inc.
From their website:
NeuroScience, Inc., by virtue of its name, has its foundations built on understanding the nervous system. Our understanding of the nervous system has led us to a point where, from a biochemical point of view, we must further consider the role hormones, cytokines, and neurotransmitters play, not as the messengers of individual systems, but rather as parts of a much larger picture. Our goal is to embrace a more global perspective on health that incorporates facets of neurology, immunology, and endocrinology. This newly emerging field has been defined as “neuroimmunology” and it forces us to rethink our approach to health and disease. Our adoption of the principles of neuroimmunology have resulted in an expanded menu of laboratory services that now include a wide spectrum of neurological, endocrinological, and immunological markers.
There are a lot of big words in that paragraph. Don't let them put you off. I think this test, this lab, may be onto something very important here. I'm looking forward to talking with their scientists very soon. Stay tuned for an interview, and meantime read up about their new Lyme test (and how you might use it), on their website.
Be well.
Think positively.
We can get better.
Managing chronic Lyme symptoms
11/12/10 17:41
If you have chronic Lyme, or post-Lyme symptoms, like I do, it's up to you to raise your awareness and change your behavior if you need to. You can't depend on your doctor to tell you to start an exercise program, give up sugar, stop drinking pop, and never touch a glass a wine. You have to make those decisions yourself. Okay, some doctors may counsel you to exercise, but speaking generally, they won't bother. It's not their job. It is their job to find the pathology and fix it, not to counsel you in preventing chronic illness.
Most chronic disease (perhaps including chronic Lyme) is a result of long-term behaviors, including diet, exercise, and other lifestyle factors. This should come as no surprise. Habits may be hard to break, but if getting healthy is our goal, we do ourselves a disservice when we don't recognize the problems caused by our own repeated behavior. Complementary and Alternative medical practitioners, such as nutritionists, acupuncturists and nurse practitioners are generally aware of this. Many perhaps most, Western doctors are not.
My own experience has taught me this. Eating sugary food or drinking alcohol is one example. I've been living with so-called chronic Lyme for 6 years now. When I make the choice to eat those cookies, knock back that beer, stress out from overworking, or skip the gym for days on end, my body reacts. I can ignore the obvious cause and effect. I can attribute the flare-ups and Lyme-brain to the capricious Borrelia infection, or I can take responsibility for giving the infection an advantage. I can choose to recognize my own culpability, and next time the cookies are passed around or my friend wants to pour me a glass of wine, I can simply say no thanks. What may have begun with a Borrelia infection from a tick bite can be exacerbated by habitual behaviors that continue unchecked for years or even many decades. Nothing about chronic Lyme is simple. There is even controversy over calling it 'chronic Lyme.' But one thing seems clear. Medicine alone cannot cure a person suffering with long-term Lyme symptoms. We need to approach healing from multiple levels.
Success stories are published here for many reasons. We need the inspiration, the 'atta girl/boy' pat on the back, for one thing. For another, we want a recipe. 'How did that person do it? What protocol did she or he follow? If they can do it, maybe there is hope for me.'
Managing chronic Lyme disease is dicey, no question about it. But there are many ways to prevent the problems we know are lurking, by making intelligent choices and stopping behavior known to increase the problems. One way to begin raising your awareness around habits that may be hurting you is to see what the Lyme experts say about it. If you think for one minute that drinking alcohol is okay when you have a Lyme infection, just check out what Dr. Burrascano has to say about it.
Dr. Burrascano's bullet list for chronic Lyme:
CHRONIC LYME- Treatment Issues
• In chronic Lyme Disease, active infection may persist despite prior antibiotic therapy
• Relapses do occur and retreatment is often needed
• Repeated or prolonged antibiotic therapy usually is necessary
• High doses of antibiotics are needed, and blood levels should be confirmed wherever possible
• Antibiotic combinations usually are necessary
• Check for co-infections and immune status, and treat appropriately
• May need to rotate through different regimens based on response
• If the CD-57 count is not normal at the end of treatment, then continued illness or a relapse is likely
• May not cure the infection, and may need repeated or open-ended maintenance therapy
• Signs of persistence of infection:
– continued fevers, synovitis
– four week cycles, migrating symptoms
– PCR positivity and low CD-57 counts
• As symptoms wind down, I DO NOT cut the dose, for resistance may develop
• Aggressive supportive therapy is required- and search for any other possible cause of a weakened host:
– Toxin exposure, heavy metal poisoning, malnutrition, endocrine dysfunction, other illnesses, severe or ongoing stress
• Progressively increase exercise program as the symptoms of Lyme decrease
– Exercise is vital and required, or a full recovery will not occur
– Not exercising will increase risk of a relapse
* This post was modified by the editor on 11.24.10.
Most chronic disease (perhaps including chronic Lyme) is a result of long-term behaviors, including diet, exercise, and other lifestyle factors. This should come as no surprise. Habits may be hard to break, but if getting healthy is our goal, we do ourselves a disservice when we don't recognize the problems caused by our own repeated behavior. Complementary and Alternative medical practitioners, such as nutritionists, acupuncturists and nurse practitioners are generally aware of this. Many perhaps most, Western doctors are not.
My own experience has taught me this. Eating sugary food or drinking alcohol is one example. I've been living with so-called chronic Lyme for 6 years now. When I make the choice to eat those cookies, knock back that beer, stress out from overworking, or skip the gym for days on end, my body reacts. I can ignore the obvious cause and effect. I can attribute the flare-ups and Lyme-brain to the capricious Borrelia infection, or I can take responsibility for giving the infection an advantage. I can choose to recognize my own culpability, and next time the cookies are passed around or my friend wants to pour me a glass of wine, I can simply say no thanks. What may have begun with a Borrelia infection from a tick bite can be exacerbated by habitual behaviors that continue unchecked for years or even many decades. Nothing about chronic Lyme is simple. There is even controversy over calling it 'chronic Lyme.' But one thing seems clear. Medicine alone cannot cure a person suffering with long-term Lyme symptoms. We need to approach healing from multiple levels.
Success stories are published here for many reasons. We need the inspiration, the 'atta girl/boy' pat on the back, for one thing. For another, we want a recipe. 'How did that person do it? What protocol did she or he follow? If they can do it, maybe there is hope for me.'
Managing chronic Lyme disease is dicey, no question about it. But there are many ways to prevent the problems we know are lurking, by making intelligent choices and stopping behavior known to increase the problems. One way to begin raising your awareness around habits that may be hurting you is to see what the Lyme experts say about it. If you think for one minute that drinking alcohol is okay when you have a Lyme infection, just check out what Dr. Burrascano has to say about it.
Dr. Burrascano's bullet list for chronic Lyme:
CHRONIC LYME- Treatment Issues
• In chronic Lyme Disease, active infection may persist despite prior antibiotic therapy
• Relapses do occur and retreatment is often needed
• Repeated or prolonged antibiotic therapy usually is necessary
• High doses of antibiotics are needed, and blood levels should be confirmed wherever possible
• Antibiotic combinations usually are necessary
• Check for co-infections and immune status, and treat appropriately
• May need to rotate through different regimens based on response
• If the CD-57 count is not normal at the end of treatment, then continued illness or a relapse is likely
• May not cure the infection, and may need repeated or open-ended maintenance therapy
• Signs of persistence of infection:
– continued fevers, synovitis
– four week cycles, migrating symptoms
– PCR positivity and low CD-57 counts
• As symptoms wind down, I DO NOT cut the dose, for resistance may develop
• Aggressive supportive therapy is required- and search for any other possible cause of a weakened host:
– Toxin exposure, heavy metal poisoning, malnutrition, endocrine dysfunction, other illnesses, severe or ongoing stress
• Progressively increase exercise program as the symptoms of Lyme decrease
– Exercise is vital and required, or a full recovery will not occur
– Not exercising will increase risk of a relapse
* This post was modified by the editor on 11.24.10.
Wanted: YOU to live a healthy post-Lyme life
10/13/10 17:04
"You know you don't have chronic Lyme disease anymore when you're ready to plan a trip."
I honestly can't remember (Lyme-brain) who said it to me, but that casual remark has been rolling around in my head a lot lately. I'm not exactly planning a trip, but my professional workload has increased exponentially this fall, and I am multi-tasking like a brand-new BlackBerry. I feel I actually COULD plan a trip, and that is almost just as good, if you know what I'm saying.
Chronic Lyme disease has been a way of life for five years, however, I got a wake-up call yesterday when I caught myself saying out loud, "I could never have multi-tasked like this when I had Lyme."
When I had Lyme.
When I HAD Lyme.
Such a lovely phrase! I could sing.
Let me back up for a second though and tell you: I have no medical proof of this statement. In fact, in all the years I've been looking into the problem of Lyme disease treatment and diagnoses, what I have discovered is evidence to suggest that a healthy post-Lyme survivor will probably continue to play host to the Lyme bacterial complex throughout their life.
So the question is, why do some people, regardless of their duration or methods of Lyme disease treatment, develop into healthy post-Lyme survivors -- and why do some people develop symptoms of chronic Lyme disease? It's a maddening situation.
I talk to many people involved in the medical and healing professions. When I first began conducting these interviews five years ago, I observed that many doctors had differing opinions about every aspect of Lyme, particularly when it came to Lyme disease treatment. I assumed that I would soon begin to hear the same approach being used by the doctors I interviewed. But instead, over the years I have noticed that all the experts have their own perspectives, their own opinions, their own approaches to healing Lyme. And Lyme isn't simple. Nothing about it seems to be simple, though much about it has certainly been oversimplified.
The answer to that question, of why do some suffer from chronic Lyme symptoms, while others seem to drift back into a post-Lyme level of relatively good health, is a mystery to me. I will keep asking the questions, and knock on wood in the meantime.
I receive a lot of letters from readers of this blog, and you are all in my heart every single day. My wish is for all of you to experience that unique and buzzing wonder that is a healthy mind and body: ready, willing, and able, to work, love, and live a normal life again. To surprise yourself one day soon by hearing these words come out of your own mouth: When I HAD Lyme...
And maybe you'll plan a trip too!
I honestly can't remember (Lyme-brain) who said it to me, but that casual remark has been rolling around in my head a lot lately. I'm not exactly planning a trip, but my professional workload has increased exponentially this fall, and I am multi-tasking like a brand-new BlackBerry. I feel I actually COULD plan a trip, and that is almost just as good, if you know what I'm saying.
Chronic Lyme disease has been a way of life for five years, however, I got a wake-up call yesterday when I caught myself saying out loud, "I could never have multi-tasked like this when I had Lyme."
When I had Lyme.
When I HAD Lyme.
Such a lovely phrase! I could sing.
Let me back up for a second though and tell you: I have no medical proof of this statement. In fact, in all the years I've been looking into the problem of Lyme disease treatment and diagnoses, what I have discovered is evidence to suggest that a healthy post-Lyme survivor will probably continue to play host to the Lyme bacterial complex throughout their life.
So the question is, why do some people, regardless of their duration or methods of Lyme disease treatment, develop into healthy post-Lyme survivors -- and why do some people develop symptoms of chronic Lyme disease? It's a maddening situation.
I talk to many people involved in the medical and healing professions. When I first began conducting these interviews five years ago, I observed that many doctors had differing opinions about every aspect of Lyme, particularly when it came to Lyme disease treatment. I assumed that I would soon begin to hear the same approach being used by the doctors I interviewed. But instead, over the years I have noticed that all the experts have their own perspectives, their own opinions, their own approaches to healing Lyme. And Lyme isn't simple. Nothing about it seems to be simple, though much about it has certainly been oversimplified.
The answer to that question, of why do some suffer from chronic Lyme symptoms, while others seem to drift back into a post-Lyme level of relatively good health, is a mystery to me. I will keep asking the questions, and knock on wood in the meantime.
I receive a lot of letters from readers of this blog, and you are all in my heart every single day. My wish is for all of you to experience that unique and buzzing wonder that is a healthy mind and body: ready, willing, and able, to work, love, and live a normal life again. To surprise yourself one day soon by hearing these words come out of your own mouth: When I HAD Lyme...
And maybe you'll plan a trip too!
Battling Lyme Disease – The Warrior’s Journey
09/29/10 10:25
This is a guest article from Triza Schultz.
Just recently, I sat in one of the tranquil rooms at the Longevity Healthcare Center in San Luis Obispo, California, talking with owners Peter J. Muran, MD, and Sandy Muran, PhD, about their mission in partnering with patients on the fairly new concept in the western medical community of addressing the “whole” person in the doctor’s office throughout the healing process – the body, the mind, and the spirit.
I’ve been winning the battle over Lyme disease for over 10 years. I was accurately diagnosed in 2005 at the age of 52, by Internist and Lyme Specialist Daniel K. Kinderlehrer, while living in New Mexico. My case took the slower, hidden route of thyroid and adrenal breakdown which caused several previous doctors to diagnose mild Benign Essential Tremor, Fibromyalgia, and Chronic Fatigue. Then as the disease progressed untreated, the symptoms morphed into significant neuro-muscular malfunctions and heart fluctuations, which mimicked MS and Parkinson’s diseases, resulting in the inability to walk, being bedridden.
Lyme and its comrades of co-infections are brilliant at mimicking other conditions and diseases. Left untreated Lyme kills! Read full story
Just recently, I sat in one of the tranquil rooms at the Longevity Healthcare Center in San Luis Obispo, California, talking with owners Peter J. Muran, MD, and Sandy Muran, PhD, about their mission in partnering with patients on the fairly new concept in the western medical community of addressing the “whole” person in the doctor’s office throughout the healing process – the body, the mind, and the spirit.
I’ve been winning the battle over Lyme disease for over 10 years. I was accurately diagnosed in 2005 at the age of 52, by Internist and Lyme Specialist Daniel K. Kinderlehrer, while living in New Mexico. My case took the slower, hidden route of thyroid and adrenal breakdown which caused several previous doctors to diagnose mild Benign Essential Tremor, Fibromyalgia, and Chronic Fatigue. Then as the disease progressed untreated, the symptoms morphed into significant neuro-muscular malfunctions and heart fluctuations, which mimicked MS and Parkinson’s diseases, resulting in the inability to walk, being bedridden.
Lyme and its comrades of co-infections are brilliant at mimicking other conditions and diseases. Left untreated Lyme kills! Read full story
Jessica Wojenski, teen on a mission to educate people about Lyme
07/03/10 11:54
As reported in the Hollis Brookline Journal, teenager Jessica Wojenski, who recently graduated from New Hampshire's Bedford High School, has struggled to recover from Lyme symptoms severe enough to keep her out of school much of her junior and senior years.
“There’s such a lack of awareness out there about this that unless you scare people into realizing, they’re never going to get it, even though I hate doing that,” Jessica told the reporter.
I know just how she feels, and you probably do as well, if you have suffered with debilitating Lyme symptoms. Jessica is dedicated to raising awareness of the complications the disease can cause. Evidently she did not show symptoms in the early stages, which is a problem that many of us deal with -- not even suspecting Lyme disease as a cause of our painful and disorienting symptoms until the disease has progressed beyond the early stages. Kudos to her, and we hope she continues to find support in her New Hampshire community, which is located in the hot zone for ticks and Lyme infections.
When you are first diagnosed, you can easily be overwhelmed by information about what to do. What will work, what won't? Who should you consult and who can you trust as a reliable resource?
I agree with Jessica, there is not enough awareness of the serious nature of Lyme disease out there. Like her, I contracted Lyme about 5 or 6 years ago, and my painful symptoms and treatment quickly made it impossible for me to live my life in a normal way. Since then, my mission has also been to help educate people about this disease through sharing my interviews with Lyme disease experts and people who are living normal, healthy lives again, post-Lyme.
My life is now back to normal, thankfully, and my hope is that yours will soon be too. This is a good place to start educating yourself and clear up any confusion. Our list of "10 things you need to know about Lyme," is available immediately, when you sign up for our free newsletter.
“There’s such a lack of awareness out there about this that unless you scare people into realizing, they’re never going to get it, even though I hate doing that,” Jessica told the reporter.
I know just how she feels, and you probably do as well, if you have suffered with debilitating Lyme symptoms. Jessica is dedicated to raising awareness of the complications the disease can cause. Evidently she did not show symptoms in the early stages, which is a problem that many of us deal with -- not even suspecting Lyme disease as a cause of our painful and disorienting symptoms until the disease has progressed beyond the early stages. Kudos to her, and we hope she continues to find support in her New Hampshire community, which is located in the hot zone for ticks and Lyme infections.
When you are first diagnosed, you can easily be overwhelmed by information about what to do. What will work, what won't? Who should you consult and who can you trust as a reliable resource?
I agree with Jessica, there is not enough awareness of the serious nature of Lyme disease out there. Like her, I contracted Lyme about 5 or 6 years ago, and my painful symptoms and treatment quickly made it impossible for me to live my life in a normal way. Since then, my mission has also been to help educate people about this disease through sharing my interviews with Lyme disease experts and people who are living normal, healthy lives again, post-Lyme.
My life is now back to normal, thankfully, and my hope is that yours will soon be too. This is a good place to start educating yourself and clear up any confusion. Our list of "10 things you need to know about Lyme," is available immediately, when you sign up for our free newsletter.
Biotoxins test and chronic Lyme
06/20/10 16:43
Biotoxins created by the Lyme bacterial complex and released into the body can cause chronic illness, even when antibiotics are killing the spirochetes. You will recognize these illnesses by their other names: Chronic Fatigue Syndrome, Fibromyalgia, Sick Building Syndrome, irritable bowel syndrome, and depression.
People who cannot naturally eliminate biotoxins develop chronic illness. About 20% of patients with Lyme disease, due to their hepa-type, are susceptible to biotoxin illnesses. However, according to Dr Richie Shoemaker and other biotoxin experts, the toxins can be eliminated and good health can be restored.
From biotoxin.info: "Many physicians feel that diagnostic tests for Lyme are unreliable, due to differences between strains of the bacteria, and the potential for co-infections with Bartonella, Babesia and/or Ehrlichia. A team of researchers at Boston University Medical Center (Cartwright, Martin Donta) discovered and patented (US Patent No. 6,667,038) the Bbtox1 neurotoxin. They reported that the effects of Bbtox1 were consistent with that of botulinium and other cytoskeletal toxins. Even so, there are no chemical tests for the disease-causing toxin B. burgdorferi produces and releases into human body, even as antibiotics are killing the bacteria. Without such tests, the medical debate over whether or not Lyme can be quickly cured has surged in recent years, provoking frequent battles in which physicians have attacked each other's credibility and integrity (and in a few cases, even their medical licenses). All too often, suffering patients have been left in the middle, essentially ignored by doctors who contend that their long-term symptoms aren't the result of Chronic Lyme, but of 'Fibromyalgia,' 'Chronic Fatigue Syndrome', 'depression,' or 'irritable bowel syndrome.'"
Testing for nervous system dysfunction can be done online. The Visual Contrast Sensitivity (VCS) test is a pattern recognition test that Dr Shoemaker uses to help determine how the nervous system is functioning. According to Dr Joseph Burrascano, at least 70 - 90% of patients whose VCS test is abnormal feel better with treatment, while 30% of patients who test normal from the VCS test feel better with neurotoxin treatment.
When testing for Lyme infection, coinfections are often culprits that go undetected. Be sure to look for Bartonella or Babesia, which destroys red blood cells.
Dr Shoemaker and other Lyme experts agree that if you find elevated C4-A markers, and if symptoms are persistent beyond the initial antibiotic protocol that may indicate that a longer antibiotic treatment, possibly including intravenous antibiotic therapy, is needed. As he makes it clear in this video, you and your doctor will be the judge in whether or not you should use long-term antibiotics.
People who cannot naturally eliminate biotoxins develop chronic illness. About 20% of patients with Lyme disease, due to their hepa-type, are susceptible to biotoxin illnesses. However, according to Dr Richie Shoemaker and other biotoxin experts, the toxins can be eliminated and good health can be restored.
From biotoxin.info: "Many physicians feel that diagnostic tests for Lyme are unreliable, due to differences between strains of the bacteria, and the potential for co-infections with Bartonella, Babesia and/or Ehrlichia. A team of researchers at Boston University Medical Center (Cartwright, Martin Donta) discovered and patented (US Patent No. 6,667,038) the Bbtox1 neurotoxin. They reported that the effects of Bbtox1 were consistent with that of botulinium and other cytoskeletal toxins. Even so, there are no chemical tests for the disease-causing toxin B. burgdorferi produces and releases into human body, even as antibiotics are killing the bacteria. Without such tests, the medical debate over whether or not Lyme can be quickly cured has surged in recent years, provoking frequent battles in which physicians have attacked each other's credibility and integrity (and in a few cases, even their medical licenses). All too often, suffering patients have been left in the middle, essentially ignored by doctors who contend that their long-term symptoms aren't the result of Chronic Lyme, but of 'Fibromyalgia,' 'Chronic Fatigue Syndrome', 'depression,' or 'irritable bowel syndrome.'"
Testing for nervous system dysfunction can be done online. The Visual Contrast Sensitivity (VCS) test is a pattern recognition test that Dr Shoemaker uses to help determine how the nervous system is functioning. According to Dr Joseph Burrascano, at least 70 - 90% of patients whose VCS test is abnormal feel better with treatment, while 30% of patients who test normal from the VCS test feel better with neurotoxin treatment.
When testing for Lyme infection, coinfections are often culprits that go undetected. Be sure to look for Bartonella or Babesia, which destroys red blood cells.
Dr Shoemaker and other Lyme experts agree that if you find elevated C4-A markers, and if symptoms are persistent beyond the initial antibiotic protocol that may indicate that a longer antibiotic treatment, possibly including intravenous antibiotic therapy, is needed. As he makes it clear in this video, you and your doctor will be the judge in whether or not you should use long-term antibiotics.
What's stressing you?
03/20/10 17:04
Stress is believed by many to be a huge contributor of illness. Struggling with Lyme disease symptoms is stressful not only on your physical and mental bodies, but also on your emotions. And to top it off, even your own awareness of the stresses in your life can be a source of anxiety.
I remember when I was told that my Lyme-induced skin rash was nothing but a bad case of eczema. The nurse practitioner I'd gone to for help asked me in-depth questions about my rash, my diet, and my health history. She seemed puzzled that I was not the type who might suffer from eczema. I had never overused antibiotics, my Mediterranean-type diet included fresh greens and did not include sugar or alcohol. I was very much in love with my life-partner and running a small business that satisfied my financial needs, and which gave me time to spend with family and friends.
As I stood to leave, she peered pensively over her glasses at me and tapped her pen against her chin for a second. "You really must do something about whatever is stressing you out so badly," she said.
When I returned a blank look, she threw me a doctorly look and added, "think about it."
On the drive home, I soul-searched, but still couldn't locate a source of stress along the magnitude she was referring to. It wasn't as if I was living in a bubble, I had certainly had my challenges and bumps on the road of life. But at the time, things were going well. As a naturally self-reflective person, I felt a little embarrassed. Out of touch with myself. Was I making myself sick? By the time I pulled into my driveway, I had concluded that there must be something really wrong with me -- mentally and emotionally, not physically.
Months later, when a different doctor had my blood tested at IGeneX and I received a positive diagnosis for the Lyme infection, I felt that odd sense of relief familiar to many people with this disease. The illness, the mysterious symptoms, the long journey to a positive diagnosis, and the diagnosis itself is so hard-fought and hard-won. And finally, the physical and mental stress of treatment itself. It was a little like that old joke about the tombstone engraved with "I TOLD you I was sick!"
If you think stress might be a contributing factor to your illness (or like me, even if you don't), here are 7 things to do to eliminate or reduce tension and anxiety every day.
1. Set strong boundaries.
2. Take time for yourself.
3. Find areas of your life to maintain control.
4. Learn when to say "no, thanks."
5. Surround yourself with supportive and proactive people.
6. Ask for help when you need it.
7. Love yourself.
How do you deal best with the everyday stresses in your life, as you heal from Lyme? Please let me know in the comments. I'd love to hear from you!
Reduce stress with the 100 Perspectives on Lyme Disease.
I remember when I was told that my Lyme-induced skin rash was nothing but a bad case of eczema. The nurse practitioner I'd gone to for help asked me in-depth questions about my rash, my diet, and my health history. She seemed puzzled that I was not the type who might suffer from eczema. I had never overused antibiotics, my Mediterranean-type diet included fresh greens and did not include sugar or alcohol. I was very much in love with my life-partner and running a small business that satisfied my financial needs, and which gave me time to spend with family and friends.
As I stood to leave, she peered pensively over her glasses at me and tapped her pen against her chin for a second. "You really must do something about whatever is stressing you out so badly," she said.
When I returned a blank look, she threw me a doctorly look and added, "think about it."
On the drive home, I soul-searched, but still couldn't locate a source of stress along the magnitude she was referring to. It wasn't as if I was living in a bubble, I had certainly had my challenges and bumps on the road of life. But at the time, things were going well. As a naturally self-reflective person, I felt a little embarrassed. Out of touch with myself. Was I making myself sick? By the time I pulled into my driveway, I had concluded that there must be something really wrong with me -- mentally and emotionally, not physically.
Months later, when a different doctor had my blood tested at IGeneX and I received a positive diagnosis for the Lyme infection, I felt that odd sense of relief familiar to many people with this disease. The illness, the mysterious symptoms, the long journey to a positive diagnosis, and the diagnosis itself is so hard-fought and hard-won. And finally, the physical and mental stress of treatment itself. It was a little like that old joke about the tombstone engraved with "I TOLD you I was sick!"
If you think stress might be a contributing factor to your illness (or like me, even if you don't), here are 7 things to do to eliminate or reduce tension and anxiety every day.
1. Set strong boundaries.
2. Take time for yourself.
3. Find areas of your life to maintain control.
4. Learn when to say "no, thanks."
5. Surround yourself with supportive and proactive people.
6. Ask for help when you need it.
7. Love yourself.
How do you deal best with the everyday stresses in your life, as you heal from Lyme? Please let me know in the comments. I'd love to hear from you!
Reduce stress with the 100 Perspectives on Lyme Disease.
Wake up call: Lyme symptoms return
02/01/10 13:12
About six weeks ago I got a nasty wake-up call. My Lyme symptoms began to return. To cut to the chase, I am getting things under control again slowly, but it's been a trial.
Has that ever happened to you?
"It's a rotten deal" to quote my dear old auntie, but it's more than that. I'm trying to keep the perspective that most of all it's a powerful reminder about the importance of staying firmly rooted in my healthy routine.
I forget that I share my body and mind with a bunch of Lyme bugs. When I've got the situation under control, I kill them off slowly and without too much herxing, they don't act out, and I feel good. I can think and talk and walk and work and live and love, just like I was designed to do. The problems start when I forget (as I did six months ago) about the delicate balance I've got going on. Last year I was feeling so incredibly good, so Lyme-free, that I slowly let little things slip. I re-introduced some sugar into my diet. I let myself indulge in a beer now and again -- figuring it's got protein, B vitamins, minerals, magnesium, selenium, iron and it's a stress-buster in reasonable quantities. After all, I rationalized, it was surely not a recipe for disaster, right?
But then, following a few months of slippage, the perfect storm hit.
Literally. Our region was hit by snow-pocalypse in mid-December, leaving us without power for several days. It was cold. I was cold the whole time. We were snowed-in for over three days. My partner was dealing with a health concern of his own, which stressed us both out as we could not get out to get what we needed. In addition, I'd been sick with a flu prior to the storm, so my exercise routine was interrupted. I'd stopped taking a few of my mainstay supplements, and other stuff...you get the picture. When the snow melted and the power came back on I began to make up for lost time (or so I thought) by exercising twice as much, even introducing African dance classes into the mix, which, if you've ever done, is quite the workout!
Anyway, the symptoms have had a hay-day with me, the bugs have been partying, and I'm finally, but ever-so-slowly returning from the brink of a really painful six-week herx. My worst since I was first diagnosed in 2005.
The point is, we each have to determine what the right healing path is for us. For me, the two biggies are keeping up with my supplements and herbal therapies and not slacking on a sane amount of exercise. Also, it's about staying warm, as my body temp runs low, which is typical of people with a Lyme infection. Through trial and error I've also figured out which other things contribute to my personal homeostasis.
And I'm freshly vigilant for the Lyme bugs, who have somehow not quite managed yet to eat my common sense (completely). I'm not going to slip again.
Has that ever happened to you?
"It's a rotten deal" to quote my dear old auntie, but it's more than that. I'm trying to keep the perspective that most of all it's a powerful reminder about the importance of staying firmly rooted in my healthy routine.
I forget that I share my body and mind with a bunch of Lyme bugs. When I've got the situation under control, I kill them off slowly and without too much herxing, they don't act out, and I feel good. I can think and talk and walk and work and live and love, just like I was designed to do. The problems start when I forget (as I did six months ago) about the delicate balance I've got going on. Last year I was feeling so incredibly good, so Lyme-free, that I slowly let little things slip. I re-introduced some sugar into my diet. I let myself indulge in a beer now and again -- figuring it's got protein, B vitamins, minerals, magnesium, selenium, iron and it's a stress-buster in reasonable quantities. After all, I rationalized, it was surely not a recipe for disaster, right?
But then, following a few months of slippage, the perfect storm hit.
Literally. Our region was hit by snow-pocalypse in mid-December, leaving us without power for several days. It was cold. I was cold the whole time. We were snowed-in for over three days. My partner was dealing with a health concern of his own, which stressed us both out as we could not get out to get what we needed. In addition, I'd been sick with a flu prior to the storm, so my exercise routine was interrupted. I'd stopped taking a few of my mainstay supplements, and other stuff...you get the picture. When the snow melted and the power came back on I began to make up for lost time (or so I thought) by exercising twice as much, even introducing African dance classes into the mix, which, if you've ever done, is quite the workout!
Anyway, the symptoms have had a hay-day with me, the bugs have been partying, and I'm finally, but ever-so-slowly returning from the brink of a really painful six-week herx. My worst since I was first diagnosed in 2005.
The point is, we each have to determine what the right healing path is for us. For me, the two biggies are keeping up with my supplements and herbal therapies and not slacking on a sane amount of exercise. Also, it's about staying warm, as my body temp runs low, which is typical of people with a Lyme infection. Through trial and error I've also figured out which other things contribute to my personal homeostasis.
And I'm freshly vigilant for the Lyme bugs, who have somehow not quite managed yet to eat my common sense (completely). I'm not going to slip again.
Relief for painful joints
09/18/08 13:39
One of the most common Lyme disease symptoms is achey knees, fingers, and other painful joints. If you suffer from rheumatoid arthritis, you may find relief with moxibustion, which you can create with the heat from a lighted, tightly wrapped bunch of dried mugwort. Moxa is mugwort.
Author, Herbalist and acupuncturist Lesley Tierra, whose arthritis massage oil formula I've posted here, says many arthritis sufferers find relief from moxibustion. To use it on your knees or fingers, light one end of the moxa stick by holding it over a candle, or with a lighter. The flame will go out but the stick will still be burning, like hot coal. Hold the cool end and aim the hot end of the moxa over the achey place, close enough to feel the heat. Be careful not to touch the moxa to your skin. I've been using it on my aching knees for about ten minutes at a time, once a day. Sitting quietly for a few minutes and appreciating the soothing warmth flooding my joints has also helped remind me to slow down during a busy work week.
Moxibustion is used in Traditional Chinese Medicine to warm a patient's skin and stimulate qi, the life force. You can obtain a moxibustion bundle from an acupuncturist, which is where I got mine. It's about the same size as a cigar, and while I think it smells a whole lot nicer than most cigars, it does create a fair amount of smoke and incense while burning.
Read more about Lyme disease treatment.
Author, Herbalist and acupuncturist Lesley Tierra, whose arthritis massage oil formula I've posted here, says many arthritis sufferers find relief from moxibustion. To use it on your knees or fingers, light one end of the moxa stick by holding it over a candle, or with a lighter. The flame will go out but the stick will still be burning, like hot coal. Hold the cool end and aim the hot end of the moxa over the achey place, close enough to feel the heat. Be careful not to touch the moxa to your skin. I've been using it on my aching knees for about ten minutes at a time, once a day. Sitting quietly for a few minutes and appreciating the soothing warmth flooding my joints has also helped remind me to slow down during a busy work week.
Moxibustion is used in Traditional Chinese Medicine to warm a patient's skin and stimulate qi, the life force. You can obtain a moxibustion bundle from an acupuncturist, which is where I got mine. It's about the same size as a cigar, and while I think it smells a whole lot nicer than most cigars, it does create a fair amount of smoke and incense while burning.
Read more about Lyme disease treatment.
Psychology Today on neuroborreliosis
06/09/08 12:32
Lyme disease can affect every system in the body, including the brain. So what happens when a doctor you respect tells you that your unbearable pain is all in your head? Read this hair-raising account of one family's journey to hell and back, in the latest issue of Psychology Today. In their story, you're bound to recognize parts of your own.
Read the article in Psychology Today.
Become a member and listen to the experts directly.
Read the article in Psychology Today.
Become a member and listen to the experts directly.
Parasites and Lyme symptoms
06/03/08 11:31
Lyme disease symptoms are not only caused by the Borrelia bacteria. Co-infections from other bacteria transmitted through ticks, such as mycoplasma and parasites are also responsible. Antibiotics kill bacteria, but not parasites.
Dr. Eva Sapi, director of Lyme research at the University of New Haven, Connecticut, went online to search for information about a particular parasite with the official name of microfilaria nematode. There she found a European website with pictures of the microfilaria, and discussion about a protocol for treating Lyme with salt and vitamin C. Prior to stumbling across the website, she did not know about that particular protocol.
Although she is pleased and surprised to discover that patients have gotten help from the protocol, she expressed some concern that we in the US are behind in Lyme research. Apparently the salt and C protocol is treating a parasite connected with Lyme disease that researchers in the US haven't even begun to isolate.
"I talked to Lyme patients and some of them, like you, are very familiar with the protocol," Dr. Sapi told me, "and said that it even helped them tremendously."
We invite you to become an LDRD member so that you can listen to the full interview with Dr. Sapi, as well as other Lyme specialists.
Dr. Eva Sapi, director of Lyme research at the University of New Haven, Connecticut, went online to search for information about a particular parasite with the official name of microfilaria nematode. There she found a European website with pictures of the microfilaria, and discussion about a protocol for treating Lyme with salt and vitamin C. Prior to stumbling across the website, she did not know about that particular protocol.
Although she is pleased and surprised to discover that patients have gotten help from the protocol, she expressed some concern that we in the US are behind in Lyme research. Apparently the salt and C protocol is treating a parasite connected with Lyme disease that researchers in the US haven't even begun to isolate.
"I talked to Lyme patients and some of them, like you, are very familiar with the protocol," Dr. Sapi told me, "and said that it even helped them tremendously."
We invite you to become an LDRD member so that you can listen to the full interview with Dr. Sapi, as well as other Lyme specialists.
Two approaches to Lyme symptoms
04/22/08 13:04
Ginger Savely, RN, FNP, who treats people with Lyme disease symptoms and other tick-borne diseases, says, "I always tell my patients that the approach is from two angles. One is to decrease bacterial load, by giving antibiotics to kill the bacteria. The other is to strengthen the immune system."
Detoxing and boosting the immune system must go hand in hand in the successful alleviation of Lyme disease symptoms. "Because if the immune system isn't functioning very well," says Savely, "you can give a person all the antibiotics in the world, they're not going to be able to fight the infection."
Savely says her approach is realistic, considering the complicated nature of the Lyme bacteria, which has the capacity to hide and evade the body's immune system for an unknown amount of time. The twofold approach can take time and effort, yet she says the hard work eventually pays off. "Hopefully, the bacteria levels decrease to a point, where the newly strengthened immune system can take over and keep the infection at bay," she says.
Become a member and listen to our exclusive audio interview with Ginger Savely and other Lyme specialists.
Detoxing and boosting the immune system must go hand in hand in the successful alleviation of Lyme disease symptoms. "Because if the immune system isn't functioning very well," says Savely, "you can give a person all the antibiotics in the world, they're not going to be able to fight the infection."
Savely says her approach is realistic, considering the complicated nature of the Lyme bacteria, which has the capacity to hide and evade the body's immune system for an unknown amount of time. The twofold approach can take time and effort, yet she says the hard work eventually pays off. "Hopefully, the bacteria levels decrease to a point, where the newly strengthened immune system can take over and keep the infection at bay," she says.
Become a member and listen to our exclusive audio interview with Ginger Savely and other Lyme specialists.
Lyme disease symptoms in families
04/21/08 16:23
RN and Lyme expert Ginger Savely says similar Lyme disease symptoms frequently show up in members of the same family. In her experience treating patients with Tick Borne diseases at health care clinics in Texas and San Francisco, CA, some families seem to be more keenly susceptible to falling ill from a tick bite. Genetic disposition may play an important part.
The Borrelia bacteria does not affect all people to the same degree. Lyme disease symptoms vary from person to person, but family members may present similar symptoms. And some may not get sick at all, exhibiting a stronger genetic resistance to succumbing to the infection.
"It is always impressive to me how many people do have this infection that are totally fine. Many times, I will check family members that are still healthy, and they actually test very positive for the disease, although they have no symptoms," says Ginger. The bulls eye rash is not always present.
Ginger, a member of ILADS, follows their guidelines when treating Lyme patients. That means sticking with antibiotic therapy for as long as it takes. For certain patients, such as those who have suffered with Lyme disease symptoms for decades, treatment has taken up to four or five years. Neither Ginger nor her patients mind that treatment must be prolonged. As she says, "it does pay to just keep plugging along, and keep treating. Because eventually people do get better."
Read about the Expert Interview Audio Series and listen to the interview with Ginger Savely.
The Borrelia bacteria does not affect all people to the same degree. Lyme disease symptoms vary from person to person, but family members may present similar symptoms. And some may not get sick at all, exhibiting a stronger genetic resistance to succumbing to the infection.
"It is always impressive to me how many people do have this infection that are totally fine. Many times, I will check family members that are still healthy, and they actually test very positive for the disease, although they have no symptoms," says Ginger. The bulls eye rash is not always present.
Ginger, a member of ILADS, follows their guidelines when treating Lyme patients. That means sticking with antibiotic therapy for as long as it takes. For certain patients, such as those who have suffered with Lyme disease symptoms for decades, treatment has taken up to four or five years. Neither Ginger nor her patients mind that treatment must be prolonged. As she says, "it does pay to just keep plugging along, and keep treating. Because eventually people do get better."
Read about the Expert Interview Audio Series and listen to the interview with Ginger Savely.
Lyme is weird, spirochetes are crafty!
04/11/08 15:46
Lyme is weird. Spirochetes are crafty. Lyme disease symptoms can look different in everyone, because infection can occur in any system of the body. Some people never see a tick, yet they develop symptoms, go to the doctor and get antibiotics. Others can't persuade their doctors to even test for Lyme -- even if they caught the nasty little tick in the act, and display the classic symptom of a bull's eye rash. A significant number of people don't read their own symptoms right (like I said, Lyme is weird. Who can blame them for not suspecting it?) Therefore, they may not discover they've got Lyme (if they're 'lucky' enough to test positively for it) until the disease has reached the late stage. By then, according to some Lyme literate docs, the bug is very tough to catch, and v-e-r-y resistant to being killed.
What if, even after you test positively, and your doc is ready to treat you, you're turned down by your insurance company? And anyway, let's not pretend that only people with health insurance get Lyme disease. What do you do when you're sick and you're not insured? It's no secret that antibiotics are prohibitively expensive. Some herbal treatments that appear to be quite effective are less so, but if you aren't able to afford to see a Lyme literate doc in the first place, where does that leave you?
That leaves you right where untold numbers of struggling sick people find themselves: On your own. Left to your own devices. And here's the rub: Lyme brain! Anybody with this disease understands what a cruel joke the universe seems to have played. At the very moment you need your mind the most, your critical thinking faculties are all fogged up. What's a Lymie to do? Find smart people who've been down this path and ask a bazillion questions. Here's a shameless plug for our 'Interviews with Experts' series. Tune in and listen up. We've all got a lot to learn.
What if, even after you test positively, and your doc is ready to treat you, you're turned down by your insurance company? And anyway, let's not pretend that only people with health insurance get Lyme disease. What do you do when you're sick and you're not insured? It's no secret that antibiotics are prohibitively expensive. Some herbal treatments that appear to be quite effective are less so, but if you aren't able to afford to see a Lyme literate doc in the first place, where does that leave you?
That leaves you right where untold numbers of struggling sick people find themselves: On your own. Left to your own devices. And here's the rub: Lyme brain! Anybody with this disease understands what a cruel joke the universe seems to have played. At the very moment you need your mind the most, your critical thinking faculties are all fogged up. What's a Lymie to do? Find smart people who've been down this path and ask a bazillion questions. Here's a shameless plug for our 'Interviews with Experts' series. Tune in and listen up. We've all got a lot to learn.
Persistent Lyme disease symptoms to be studied
04/04/08 17:56
Some people think Lyme disease symptoms are "all in your head." Others experience persistent challenges, including severe fatigue, cognitive disorganization and arthritis, and argue that in spite of their having completed antibiotic therapy the Lyme bug is still making them sick. Regardless of your position on whether or not chronic Lyme exists, the question remains: Why do Lyme disease symptoms persist, in some patients, beyond the recommended course of antibiotics prescribed by the CDC?
A recent study conducted at the UC Davis Center for Comparative Medicine offers assurance that scientists are attempting to answer that question. According to a news release distributed by UC Davis News Service on March 31, researchers found residual amounts of the Borrelia burgdorferi bacteria lingering in the DNA of laboratory mice, after the infected mice had completed antibiotic therapy. Apparently the research suggests that although residual bacteria can be detected, there is no evidence that it is causing inflammation or disease. However, the study shows that it may, in part, account for persistent symptoms. According to lead researcher Professor Stephen Barthold, "this may explain why some Lyme disease patients recover slowly following antibiotic treatment, exhibiting what has been termed 'post-Lyme disease syndrome'."
Fortunately, we can look forward to further investigation into the cause of chronic Lyme symptoms, and perhaps even one day discovering therapies to stop Lyme's devastating effects. "The results of this study do set the stage for controlled laboratory research investigating potential therapies for persistent Lyme disease infections," researchers at the Center for Comparative Medicine say.
Read more about Lyme disease symptoms.
A recent study conducted at the UC Davis Center for Comparative Medicine offers assurance that scientists are attempting to answer that question. According to a news release distributed by UC Davis News Service on March 31, researchers found residual amounts of the Borrelia burgdorferi bacteria lingering in the DNA of laboratory mice, after the infected mice had completed antibiotic therapy. Apparently the research suggests that although residual bacteria can be detected, there is no evidence that it is causing inflammation or disease. However, the study shows that it may, in part, account for persistent symptoms. According to lead researcher Professor Stephen Barthold, "this may explain why some Lyme disease patients recover slowly following antibiotic treatment, exhibiting what has been termed 'post-Lyme disease syndrome'."
Fortunately, we can look forward to further investigation into the cause of chronic Lyme symptoms, and perhaps even one day discovering therapies to stop Lyme's devastating effects. "The results of this study do set the stage for controlled laboratory research investigating potential therapies for persistent Lyme disease infections," researchers at the Center for Comparative Medicine say.
Read more about Lyme disease symptoms.
lyme disease and fatigue
01/14/08 16:14
Do you get enough sleep? Or are you like so many people, getting by on just a few hours of shut-eye and rushing to begin your daily activities directly after the alarm goes off. In a sleep-deprived culture, surrounded by colleagues and friends who are running on coffee and bagels, it can be hard to tell when your level of fatigue is simply status quo, or if it's crossed the line to become a genuine symptom of Lyme. The garden-variety droop that comes with a busy life and a few nights of deprivation is generally a temporary problem. You can catch up and revitalize your adrenal glands with a couple of deep-sleep nights and a daytime nap or two.
On the other hand, bone-crushing fatigue, the kind that is symptomatic of Lyme, is hard to ignore. Your activities are limited because you just don't have the energy. You go to work, come home, fall asleep on the couch while waiting for dinner to cook itself. You go to bed early and try to sleep in till the last minute, but you don't wake up refreshed. You can't catch up. In fact, even after a good night's rest it can feel as if you hadn't slept a wink. You can't wash your face or tie your shoes without sitting down. In many cases, you may not even be able to hang on to your job, unless you're lucky enough to work from home.
Since that sort of fatigue is associated with a number of illnesses, including chronic fatigue syndrome or CFIDs, fibromyalgia, mononucleosis, and Lyme disease, medical testing is imperative to help you and your doctor ascertain why you are so tired. The tricky nature of the Lyme bug can make it difficult to eliminate Lyme as a possibility, even if you test negative. Your best bet is to find a doctor who is experienced in detecting Lyme disease symptoms, so that your overwhelming fatigue doesn't get ignored and written off as simple exhaustion.
On the other hand, bone-crushing fatigue, the kind that is symptomatic of Lyme, is hard to ignore. Your activities are limited because you just don't have the energy. You go to work, come home, fall asleep on the couch while waiting for dinner to cook itself. You go to bed early and try to sleep in till the last minute, but you don't wake up refreshed. You can't catch up. In fact, even after a good night's rest it can feel as if you hadn't slept a wink. You can't wash your face or tie your shoes without sitting down. In many cases, you may not even be able to hang on to your job, unless you're lucky enough to work from home.
Since that sort of fatigue is associated with a number of illnesses, including chronic fatigue syndrome or CFIDs, fibromyalgia, mononucleosis, and Lyme disease, medical testing is imperative to help you and your doctor ascertain why you are so tired. The tricky nature of the Lyme bug can make it difficult to eliminate Lyme as a possibility, even if you test negative. Your best bet is to find a doctor who is experienced in detecting Lyme disease symptoms, so that your overwhelming fatigue doesn't get ignored and written off as simple exhaustion.
Dealing with Herxes
12/10/07 15:33
Herxing occurs when your body reacts to bacterial die-off, usually as a result of taking antibiotics. The herx itself isn't considered dangerous to your health, but it can be extremely unpleasant. Your body is cleansing itself of toxins, a crucial step. The problem is that this cleansing process stirs up symptoms and makes you feel sick. Doesn't seem fair, does it? Frequent or intense herxes can stress you out, and when you're healing from LD you need more stress like you need another hole in your head. However, herxing can help Lyme patients understand what's happening to them, and some folks say that observing their herxes helps them monitor the effectiveness of their therapy.
The naturopath I consulted while in the critical stage of Lyme agreed. He suggested that I use my herxes as a guide or measurement of sorts. When I was on antibiotics, a period of about six months, it was difficult for me to distinguish between a herx and the Lyme disease symptoms themselves. I came to the conclusion, at that time, that it didn't matter which was which. They were both equally devastating, and all I could do was deal with them the best way I knew how. I wasn't at liberty to lower my dosage of abx, because according to my doctor the Lyme bacteria were likely to replicate and get stronger if I did.
Some Lyme patients say they don't herx on certain protocols, such as Steven Buhner's herbal protocol, for example. Conventional antibiotic therapy does seem to cause intense herxing, which some would say is a good sign because it indicates that you're killing the bug. I found that there were several different ways to deal with a dismal, stressful herx that accompanies chronic Lyme.
Here are just a few:
* Number one: Drink more clean water all day long, even if you think you're already drinking a lot of water. That will go a long way toward flushing out the toxins.
* Number two: Have a bowel movement every single day. Get that stuff out of there!
* Another is to drink the juice of a lemon, straight. You can also blend a whole lemon with one or two tablespoons of olive oil, put the mixture into a glass of water or juice, and drink it down.
* Dry brushing is another favorite of mine for ridding your body of toxins. However, you can't use this method if your skin is rashy, because you may make it worse. If you don't have a rash, brush your dry skin gently toward your heart each morning before you shower. This method really helps your lymph system kick into gear, and toxins that have accumulated during the night wash away down the drain.
* Take a spoonful of vegetable oil, such as olive oil, first thing in the morning. This method is as yucky as it sounds, but it works for me. Hold the oil in your mouth and swish it around, but do not swallow it. After a minute, spit it out and rinse your mouth.
* Exercise, if you possibly can. (This also helps with #2 - the bowel movement.) Sitting around is one of the worst things we can do. We have to move the body, and assist the lymph system in its critical job of carrying nutrition to the cells, and carrying the garbage away. Jump on a rebounder for five minutes in the morning, and five at night, if that's all you can manage. It will really help.
* Watch a hilarious movie, or a stand-up comic you like. When you're laughing, your body's immune system kicks into high gear. You'll also find that your whole attitude improves, and you'll sleep better at night.
Herxing and finding the balance
12/06/07 15:44
How do you tell the difference between a herx and Lyme symptoms? A herx, aka Herxheimer reaction, is many things to many people. When you're suffering, it doesn't seem to matter whether the cause is a herx or symptoms that are acting up. You just want them to stop. When you are infected with the Lyme bacteria, your body is loaded with toxins that react within your body's multiple systems and make you sick.
You have to kill the bugs and get them out of your body. Detoxifying, therefore, is a primary aim in healing from Lyme, but unfortunately, detoxing can also make you sick. When you're healing from Lyme you must try to find the balance between killing the bugs and keeping the herxes under control, so it doesn't feel like they are trying to kill you. Finding that balance is like surfing a giant wave. You must be hypervigilant, sensitive to your environment, and able to react as elegantly as possible to the perpetual changes that encompass you and carry you along. Although, as anybody who has ever suffered the stress and pain of Lyme symptoms or herxes would say, I'd rather be surfing.
It seems that herxing (often accompanied by a rash) can be triggered by a number of different factors. Stress, change of medication type and an increase in medication dosage (either herbal or pharmaceutical medications) are a few examples. Those in the Lyme community (albeit, an unwilling yet blessedly generous group of humans) deal with herxes in a wide variety of ways. That's the subject of my next post.
Until then, hang ten.
You have to kill the bugs and get them out of your body. Detoxifying, therefore, is a primary aim in healing from Lyme, but unfortunately, detoxing can also make you sick. When you're healing from Lyme you must try to find the balance between killing the bugs and keeping the herxes under control, so it doesn't feel like they are trying to kill you. Finding that balance is like surfing a giant wave. You must be hypervigilant, sensitive to your environment, and able to react as elegantly as possible to the perpetual changes that encompass you and carry you along. Although, as anybody who has ever suffered the stress and pain of Lyme symptoms or herxes would say, I'd rather be surfing.
It seems that herxing (often accompanied by a rash) can be triggered by a number of different factors. Stress, change of medication type and an increase in medication dosage (either herbal or pharmaceutical medications) are a few examples. Those in the Lyme community (albeit, an unwilling yet blessedly generous group of humans) deal with herxes in a wide variety of ways. That's the subject of my next post.
Until then, hang ten.
Lyme lowers body temperature
12/03/07 15:56
Lyme disease lowers body temperature.
Staying warm in the winter can be more challenging when you're fighting Lyme disease. You may even notice your symptoms increasing after you get a chill. When you wake up to a frosty morning, reach for a steaming hot cup of herbal or green tea to help shake off the fatigue. Add a slice of warming ginger. Lyme bacteria thrive in cool body temperatures, and many people suffering with LD actually have lowered body temps. That's why it's so important to get regular exercise and choose your beverages and foods wisely.
One of the nicest things (okay, sometimes the ONLY nice thing) about snowy weather is the occasional Snow Day. When I lived with roommates, and the snow happened to be piling up on a weekday night, we'd get up early and begin our Snow Day vigil at the kitchen table, where we could keep an eye out the front window. We'd make a big pot of coffee and tune into the local radio station to listen for the list of school closures, since we were all teachers at three different schools. I always wondered why I'd start to get chilled after my second cup.
One of the problems with coffee is that it cools your body, instead of heating it, like some spices and herbs will. For a real burst of warmth, add just a touch of cayenne. If you need sweetener, try agave nectar or a drop of stevia, not sugar, which is a no-no when you've got Lyme. Staying warm and healing is your goal through the chilly winter months.
Lyme Disease and depression
11/26/07 13:09
Depression. It isn't all in your head. Some of the symptoms related to the brain and nervous systems that have been observed in Lyme patients are headache, tremor, facial paralysis (Bell's palsy), tremor, burning or sharp stabbing sensations, numbness, irritability, dementia, and mood swings. Depressing, huh? Yet not all Lyme sufferers experience all these symptoms. Clearly, they are not only related to Lyme; they may also be indicative of another condition. Especially during the holidays, it can be tough to manage the stress brought on by financial pressures, travel, and a busy social calendar.
If you're healing from Lyme, you must slow down and nurture yourself first. Stick your regular routine as much as possible, and cut down on work if you can swing it. Cook nutritious meals, get plenty of sleep if you can, and cultivate a practice of relaxation through gentle Tai Chi, yoga, meditation, or deep breathing. If you're a mom, or accustomed to being the caretaker, it can be difficult to ask for help, but you need to get over that. Recruit help from your family and friends. This is a good time to learn how to ask for assistance when carrying in the grocery bags, making beds, or tidying up for your relatives' visit.
Brain and nervous system involvement is usually a sign of late stage, or what is referred to as chronic Lyme. Get professional medical help if you suspect you may have Lyme, even if you have not tested positive for it. Most of the tests for Lyme disease are notoriously unreliable at this point. If you are unusually depressed, or your mood swings are worsening, and you also have some of the other symptoms associated with the disease, such as crushing fatigue, fever, rash, or arthritis, it is very important to consult a Lyme-literate doctor with experience in recognizing Lyme symptoms.
In the meantime, nurture your spirit as well as your body. Spend time with folks you really love. Rent funny DVDs, look for the humor in your everyday situation. It's there, even in our suffering. Take inspiration from other people who have survived serious diseases and recovered to live happy lives. Above all, during the holidays and beyond, don't let depression get you down! Bear in mind these wise words: This too shall pass.
If you're healing from Lyme, you must slow down and nurture yourself first. Stick your regular routine as much as possible, and cut down on work if you can swing it. Cook nutritious meals, get plenty of sleep if you can, and cultivate a practice of relaxation through gentle Tai Chi, yoga, meditation, or deep breathing. If you're a mom, or accustomed to being the caretaker, it can be difficult to ask for help, but you need to get over that. Recruit help from your family and friends. This is a good time to learn how to ask for assistance when carrying in the grocery bags, making beds, or tidying up for your relatives' visit.
Brain and nervous system involvement is usually a sign of late stage, or what is referred to as chronic Lyme. Get professional medical help if you suspect you may have Lyme, even if you have not tested positive for it. Most of the tests for Lyme disease are notoriously unreliable at this point. If you are unusually depressed, or your mood swings are worsening, and you also have some of the other symptoms associated with the disease, such as crushing fatigue, fever, rash, or arthritis, it is very important to consult a Lyme-literate doctor with experience in recognizing Lyme symptoms.
In the meantime, nurture your spirit as well as your body. Spend time with folks you really love. Rent funny DVDs, look for the humor in your everyday situation. It's there, even in our suffering. Take inspiration from other people who have survived serious diseases and recovered to live happy lives. Above all, during the holidays and beyond, don't let depression get you down! Bear in mind these wise words: This too shall pass.
Lyme symptom-free
11/24/07 13:23
I am finally back to living a normal, Lyme-free life. There were days that I never, EVER thought I'd get here, but it's happening. I'm upright, I'm productive, and I'm getting on with it. I'm relatively symptom-free. Sometimes, like this morning when the birds are singing and I can smell the yummy omelets that my sweetie is cooking in the kitchen, I feel absolutely great. (Or maybe that's the Holy Basil) However, there are no magic bullets. There has never been a day when I woke up and thought, "Hey! I'm all better." Getting over Lyme is not like getting over the flu. It takes time. A lot of time. It's been two and a half years since my diagnosis, and more than three since I began to deal with mysterious symptoms.
A tiny muscle in my left eyelid is twitching, but I'm going to chalk that up to staring at this computer screen.
I took the herbal tinctures from the Amazon for about a year. Dr. Cowden's protocol worked really well for me. Currently, I'm taking a very high quality colloidal silver and a host of other helpful supplements. In October of 2006, I had a month-long herx that manifested as itchy rashes on my shins and ankles. That was always where the worst of the rashes had been, for the two years prior. I kept taking the herbs, but I was nervous that the rash might worsen, so I wasn't increasing the doses like I wanted to. I struggled with the decision to increase the doses and take my chances with more herxes, or just step back and take small amounts until I got over it and felt like I could risk a herx. I didn't increase the doses for about two months, then in about February I started increasing, and I didn't break out or feel Lymie. So I slowly started to increase more and built up to the full dose, then stayed on it until about September.
Since October of 2006 I have had no major breakouts, no problematic rashes, and every day I feel incrementally better. Symptoms, good riddance.
A tiny muscle in my left eyelid is twitching, but I'm going to chalk that up to staring at this computer screen.
I took the herbal tinctures from the Amazon for about a year. Dr. Cowden's protocol worked really well for me. Currently, I'm taking a very high quality colloidal silver and a host of other helpful supplements. In October of 2006, I had a month-long herx that manifested as itchy rashes on my shins and ankles. That was always where the worst of the rashes had been, for the two years prior. I kept taking the herbs, but I was nervous that the rash might worsen, so I wasn't increasing the doses like I wanted to. I struggled with the decision to increase the doses and take my chances with more herxes, or just step back and take small amounts until I got over it and felt like I could risk a herx. I didn't increase the doses for about two months, then in about February I started increasing, and I didn't break out or feel Lymie. So I slowly started to increase more and built up to the full dose, then stayed on it until about September.
Since October of 2006 I have had no major breakouts, no problematic rashes, and every day I feel incrementally better. Symptoms, good riddance.
Diagnosing Lyme Symptoms
11/16/07 14:24
Due to its many symptoms and its ability to mimic numerous other illnesses, Lyme disease remains tricky to diagnose. The bull's eye rash, with which the infection is frequently associated, is by no means the only symptom to be aware of. Indeed, only a relatively small percentage of people infected with the bacteria known to cause Lyme ever present with the bull's eye rash. Other symptoms include fatigue, fever, headache, joint pain, a rushing or jumpy heart, and an extreme sensitivity to bright lights, especially florescent lighting. Symptoms do not all appear in all Lyme patients, and they may present at different stages as the disease progresses.
Lyme is a multistage illness, and the first-stage symptoms mentioned above can all be mistaken as signs of another ailment. Joint pain can pass as arthritis, headache may be associated with other triggers such as workplace stress, eye strain, or menstruation. Fatigue is a universal problem, as many people suffer from lack of sleep, and when overcome by tiredness, tend to push themselves beyond a healthy limit with the assistance of caffeine. Because brain fog is primarily caused by a lack of sleep, there are many people who walk around each day trying to function normally while feeling mentally fuzzy. Thus it becomes confusing to discriminate in order to obtain a diagnosis. When is mental confusion, or the inability to make clear decisions, caused by a fatigue, and when is it part of a bacterial infection?
In advanced stages of Lyme, or in cases where the bacteria has affected the brain, called neuroborelliosis, inability to concentrate, memory loss, brain fog, speech problems such as stammering, and hallucinations are all potential symptoms, all of which, again, do not appear in every Lyme sufferer. Hallucinations can be expressed through any of the senses. They do not always manifest as visions. Some people hear voices or sounds which aren't there. Others feel sensations, such as a raging fever, when in actuality their body temperature is normal. Additionally, disorientation or a sudden onset of paranoia can be a symptom of this stage of Lyme disease.
There is no question that speech disorders, severe mental fog, and these other symptoms are upsetting and frightening. Yet once a clear diagnosis has been obtained, a Lyme patient can begin to heal using a multi-branched approach, including whatever is deemed needed by the patient and his or her team of medical support personnel. Painful and often torturous Lyme symptoms can be alleviated with effort and commitment to healing. Many Lyme sufferers eventually find themselves balanced and virtually healed from Lyme, often as a result of using a wide array of healing approaches, including pharmacological antibiotics, herbal and nutritional supplements, physical exercise, and mental and emotional support. Through heroic effort and a will to commit to their own healing, many people who have experienced even the severe and disorienting symptoms of neuroborelliosis have recovered from Lyme disease.
Lyme is a multistage illness, and the first-stage symptoms mentioned above can all be mistaken as signs of another ailment. Joint pain can pass as arthritis, headache may be associated with other triggers such as workplace stress, eye strain, or menstruation. Fatigue is a universal problem, as many people suffer from lack of sleep, and when overcome by tiredness, tend to push themselves beyond a healthy limit with the assistance of caffeine. Because brain fog is primarily caused by a lack of sleep, there are many people who walk around each day trying to function normally while feeling mentally fuzzy. Thus it becomes confusing to discriminate in order to obtain a diagnosis. When is mental confusion, or the inability to make clear decisions, caused by a fatigue, and when is it part of a bacterial infection?
In advanced stages of Lyme, or in cases where the bacteria has affected the brain, called neuroborelliosis, inability to concentrate, memory loss, brain fog, speech problems such as stammering, and hallucinations are all potential symptoms, all of which, again, do not appear in every Lyme sufferer. Hallucinations can be expressed through any of the senses. They do not always manifest as visions. Some people hear voices or sounds which aren't there. Others feel sensations, such as a raging fever, when in actuality their body temperature is normal. Additionally, disorientation or a sudden onset of paranoia can be a symptom of this stage of Lyme disease.
There is no question that speech disorders, severe mental fog, and these other symptoms are upsetting and frightening. Yet once a clear diagnosis has been obtained, a Lyme patient can begin to heal using a multi-branched approach, including whatever is deemed needed by the patient and his or her team of medical support personnel. Painful and often torturous Lyme symptoms can be alleviated with effort and commitment to healing. Many Lyme sufferers eventually find themselves balanced and virtually healed from Lyme, often as a result of using a wide array of healing approaches, including pharmacological antibiotics, herbal and nutritional supplements, physical exercise, and mental and emotional support. Through heroic effort and a will to commit to their own healing, many people who have experienced even the severe and disorienting symptoms of neuroborelliosis have recovered from Lyme disease.
Autumn leaves and Lyme disease anxiety
11/06/07 15:17
A picture arrived in my inbox this morning, my friends' adorable one-and-a-half-year old son playing in a giant pile of freshly fallen leaves. His chubby cheeks are rosy and he's smiling like an imp. But the picture made me itchy and uncomfortable. Immediately, I thought of Erythema migrans, or "bull's eye rash," which is a common symptom of bacterial infection in the early stages of Lyme disease. The rash is caused by the bacteria called Borrelia burgdorferi, the causative agent of Lyme disease. The Bull's eye rash appears as a red, slightly itchy skin rash with a clear, or whitish central area. However, Erythema migrans is not always a symptom present in patients with Lyme disease.
Lyme disease symptoms don't always show up in the form of a rash, although many people believe the bullseye rash is the most common type of symptom. Other symptoms include fever, fatigue, headache, and arthritic pain in the joints. Many people pass off the fatigue and headache as common exhaustion from an overly-busy schedule. The disease is stealthy, not always directly signaling that something's wrong.
Ticks naturally thrive during the warm summer months, but due to warmer weather in the fall and winter, it is still crucial to check for ticks, many of which carry the Lyme disease bug, AKA Borrelia burgdorferi bacterium. In many cases, the evidence suggests that if a tick is found on the body, its removal within 24 hours can prevent it from downloading its toxins into the skin. After a long struggle with Lyme disease and its crushing symptoms, my enjoyment of some of life's simple pleasures has been tainted, such as a picture of a cute little nature imp in a pile of leaves.
Lyme disease symptoms don't always show up in the form of a rash, although many people believe the bullseye rash is the most common type of symptom. Other symptoms include fever, fatigue, headache, and arthritic pain in the joints. Many people pass off the fatigue and headache as common exhaustion from an overly-busy schedule. The disease is stealthy, not always directly signaling that something's wrong.
Ticks naturally thrive during the warm summer months, but due to warmer weather in the fall and winter, it is still crucial to check for ticks, many of which carry the Lyme disease bug, AKA Borrelia burgdorferi bacterium. In many cases, the evidence suggests that if a tick is found on the body, its removal within 24 hours can prevent it from downloading its toxins into the skin. After a long struggle with Lyme disease and its crushing symptoms, my enjoyment of some of life's simple pleasures has been tainted, such as a picture of a cute little nature imp in a pile of leaves.
Lyme disease symptoms: Is herxing necessary?
02/15/07 11:43
Lyme disease symptoms are also referred to as Herxheimer reactions or herxing. Would you herx if you discovered you didn't need to? This is a question that Jean Reist, R.N., asks her patients to take to heart. Jean, who has treated hundreds of Lyme sufferers through her PA clinic, Journey to Wellness, has discovered that when Lyme patients tend to proper lymph system drainage they don't experience the stress of a herx. Jean discusses her findings in an audio interview as part of the Interviews with Experts series on the LDRD.
Herxheimer reactions, the healing crisis experienced by Lyme sufferers as a result of a die-off of Lyme bacteria, are a major source of stress for Lyme patients. Simply put, the more effective the medicine in killing the spirochetes, the greater the herx. Killing Lyme bacteria is a curious business. Agonizing pain and the recurrence of symptoms is often used as a measure for the dosage. In general the rule is: If you're herxing to a great degree, back off on the medicine. If you're not herxing at all, you may not be taking a high enough dosage. Each patient will react differently to treatment, and with a wide variety of alternative treatments available, it may take some time and experimentation before you find the right dosage.
Proper lymph drainage can facilitate the healing of Lyme disease and help reduce or even eliminate Lyme disease symptoms altogether. At the first sign of a herx, Reist advises, drink copious amounts of water, exercise, and reach for a detoxifying tonic herb such as Burbur or Parsley. Each organ in the body has a lymph "neck," which is where blockage can occur. Therefore, it's very helpful for the patient to work with a health care practitioner who can help you locate the blockage. The next step is to work on unblocking, which can be achieved in a number of ways, Reist says.
You can hear the entire interview as a member, join now and listen.
Herxheimer reactions, the healing crisis experienced by Lyme sufferers as a result of a die-off of Lyme bacteria, are a major source of stress for Lyme patients. Simply put, the more effective the medicine in killing the spirochetes, the greater the herx. Killing Lyme bacteria is a curious business. Agonizing pain and the recurrence of symptoms is often used as a measure for the dosage. In general the rule is: If you're herxing to a great degree, back off on the medicine. If you're not herxing at all, you may not be taking a high enough dosage. Each patient will react differently to treatment, and with a wide variety of alternative treatments available, it may take some time and experimentation before you find the right dosage.
Proper lymph drainage can facilitate the healing of Lyme disease and help reduce or even eliminate Lyme disease symptoms altogether. At the first sign of a herx, Reist advises, drink copious amounts of water, exercise, and reach for a detoxifying tonic herb such as Burbur or Parsley. Each organ in the body has a lymph "neck," which is where blockage can occur. Therefore, it's very helpful for the patient to work with a health care practitioner who can help you locate the blockage. The next step is to work on unblocking, which can be achieved in a number of ways, Reist says.
You can hear the entire interview as a member, join now and listen.
Getting Enough Sleep? Effects of Sleep on Lyme.
11/11/06 10:28
According to sleep researchers, a lot of us aren't getting enough hours in dreamland. If you have Lyme disease you're likely to have weird sleep patterns. Some nights you're out the minute your head hits the pillow – or even before that! Other nights you toss and fidget while the cats and dogs and everyone else in the whole neighborhood snoozes peacefully. We need to get adequate sleep if we expect to heal from this disease. While our bodies sleep, important cellular work gets done. Healing happens. The myriads of smart biological micro-elves that make up our amazingly intelligent bodies tend to the repair work that they cannot do while we're awake. Our bodies need at least 5 hours and usually no more than 8 hours of good solid sleep to make us better.
The time you go to bed is important too. Our bodies follow inner patterns known as circadian rhythms. I've noticed when I stay up past the witching hour – midnight – and sleep until after 9 a.m., I don't feel as rested as when I go to bed by 11 p.m. and wake up around 7. Dr. Christine Horner, who teaches how to use Ayurvedic practices to heal from cancer and other serious diseases, feels that we should go to bed by 10 p.m. and rise after 6 a.m. to maximize the potent healing force of sleep.
If you're a night-owl like me, 10 o'clock sounds really early. But for the sake of healing more quickly, let's make a promise, shall we? Whenever we can, we'll go to bed earlier than usual, lounge like housecats, and read a good book for a little while, then doze off. The world can turn without us. Our elves have work to do. Let's help them do it.
The time you go to bed is important too. Our bodies follow inner patterns known as circadian rhythms. I've noticed when I stay up past the witching hour – midnight – and sleep until after 9 a.m., I don't feel as rested as when I go to bed by 11 p.m. and wake up around 7. Dr. Christine Horner, who teaches how to use Ayurvedic practices to heal from cancer and other serious diseases, feels that we should go to bed by 10 p.m. and rise after 6 a.m. to maximize the potent healing force of sleep.
If you're a night-owl like me, 10 o'clock sounds really early. But for the sake of healing more quickly, let's make a promise, shall we? Whenever we can, we'll go to bed earlier than usual, lounge like housecats, and read a good book for a little while, then doze off. The world can turn without us. Our elves have work to do. Let's help them do it.