Rethinking Lyme disease treatments
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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Cleansing for health post-Lyme Disease
01/15/12 14:02 Filed in: Lyme Disease Prevention|Lyme Disease Treatment|Lyme Disease Diet|Lyme Disease Rash
January invites fresh starts. So it’s no surprise that cleansing, colon cleansing to be specific, is on the minds of many. A lot of us abandon our usually healthy diets as we travel or feast with friends and families over Thanksgiving and Christmas. Now that we’ve decked the hallways, it’s time to clear them out.
In my life BL (before Lyme,) I had embarked on dietary healing cleanses such as juice fasts quite a few times. Bear in mind, I grew up in California and one of my first jobs after high school was at a health food store, so my behavior wasn’t out of sync. But health food stores were new and not quite popular yet. Even in SoCal in the 70s - 80s you might be dubbed a little weird if you shopped in one, especially wearing your Birkenstocks and tye-died t-shirts.
Pre-internet days now seem like ancient history, but these stores always had an intriguing books section which I gravitated to. I sipped many a smoothie while reading about the virtues of sprouts, organic veggies, the healing power of vegetable juices, herbal formulas and even (ahem), enemas. Since learning about the function and importance of the colon, it’s always made sense to me that an occasional cleansing could be very helpful. Keep things moving on out. Now of course the internet is a rich source of research on, and recipes for such cleansings, including full-color images of the dreadful gunk that people have dredged from their lowlands.
Having been through Lyme’s crucible, I would never suggest that someone still healing from Lyme Disease try a colon cleanse. I haven’t yet asked, but I doubt that many Lyme doctors would advise it, based on my own experience with frequent and painful Herxheimer reactions and the Lyme symptoms themselves.
However, I’m currently on Day 6 of experimenting with an herbal intestinal cleanse. I decided to go for it because I’ve been feeling so incredibly normal for more than a year now. This is my first time since healing from LD and going through many years of both traditional and alternative Lyme Disease treatment. I’ve got a good feeling about it. Over the holidays, I did experience a few skin-breakouts and some sort of shingle pain that I attribute to chronic Lyme symptoms. It seems to happen every winter as the weather grows chilly & dry and I spend more time indoors with the heater on. It’s too early to come to any real conclusions, but since Day 1 I’ve noticed a distinct reduction in swelling in my tummy, and my skin breakouts have almost completely faded. The skin isn’t itchy or red as it has been for over a month. I haven’t had any negative effects from the herbs, no Herxing (thank goodness!), no brain-fog, no skin rash and no fatigue. In fact I’m super energized and I’m off to a dance class as soon as I finish this post!
Drinking more water (one doctor mentions that we should all be drinking nearly a gallon per day) is so important. And you know how I feel about exercise - it’s the miracle cure when you can possibly swing it. But on top of these two things, it seems to be helping me to focus, at least for a week or two, on cleansing my colon again. Remember, I’m no doctor and I’m certainly not doling out recommendations here. But I know sometimes it’s helpful to hear someone else’s experience.
I can’t remember where I copied this quote from so apologize for the lack of acknowledgement. But in the spirit of the new year and its power & potential for healing, I want to include it here:
"The future is just the past catching up with us. Today is the preview of tomorrow's reality. In the future we will say one of two things. ‘I wish I had’ or ‘I'm glad I did,’ but we make that choice today."
If you’ve cleansed lately please tell me what your experience was. I’d love to hear from you, especially if you’ve had Lyme.
In my life BL (before Lyme,) I had embarked on dietary healing cleanses such as juice fasts quite a few times. Bear in mind, I grew up in California and one of my first jobs after high school was at a health food store, so my behavior wasn’t out of sync. But health food stores were new and not quite popular yet. Even in SoCal in the 70s - 80s you might be dubbed a little weird if you shopped in one, especially wearing your Birkenstocks and tye-died t-shirts.
Pre-internet days now seem like ancient history, but these stores always had an intriguing books section which I gravitated to. I sipped many a smoothie while reading about the virtues of sprouts, organic veggies, the healing power of vegetable juices, herbal formulas and even (ahem), enemas. Since learning about the function and importance of the colon, it’s always made sense to me that an occasional cleansing could be very helpful. Keep things moving on out. Now of course the internet is a rich source of research on, and recipes for such cleansings, including full-color images of the dreadful gunk that people have dredged from their lowlands.
Having been through Lyme’s crucible, I would never suggest that someone still healing from Lyme Disease try a colon cleanse. I haven’t yet asked, but I doubt that many Lyme doctors would advise it, based on my own experience with frequent and painful Herxheimer reactions and the Lyme symptoms themselves.
However, I’m currently on Day 6 of experimenting with an herbal intestinal cleanse. I decided to go for it because I’ve been feeling so incredibly normal for more than a year now. This is my first time since healing from LD and going through many years of both traditional and alternative Lyme Disease treatment. I’ve got a good feeling about it. Over the holidays, I did experience a few skin-breakouts and some sort of shingle pain that I attribute to chronic Lyme symptoms. It seems to happen every winter as the weather grows chilly & dry and I spend more time indoors with the heater on. It’s too early to come to any real conclusions, but since Day 1 I’ve noticed a distinct reduction in swelling in my tummy, and my skin breakouts have almost completely faded. The skin isn’t itchy or red as it has been for over a month. I haven’t had any negative effects from the herbs, no Herxing (thank goodness!), no brain-fog, no skin rash and no fatigue. In fact I’m super energized and I’m off to a dance class as soon as I finish this post!
Drinking more water (one doctor mentions that we should all be drinking nearly a gallon per day) is so important. And you know how I feel about exercise - it’s the miracle cure when you can possibly swing it. But on top of these two things, it seems to be helping me to focus, at least for a week or two, on cleansing my colon again. Remember, I’m no doctor and I’m certainly not doling out recommendations here. But I know sometimes it’s helpful to hear someone else’s experience.
I can’t remember where I copied this quote from so apologize for the lack of acknowledgement. But in the spirit of the new year and its power & potential for healing, I want to include it here:
"The future is just the past catching up with us. Today is the preview of tomorrow's reality. In the future we will say one of two things. ‘I wish I had’ or ‘I'm glad I did,’ but we make that choice today."
If you’ve cleansed lately please tell me what your experience was. I’d love to hear from you, especially if you’ve had Lyme.
How to recognize Lyme symptoms in your child
12/06/11 10:44 Filed in: Lyme Disease Symptoms|Lyme Disease Diagnosis
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
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.
Alternative treatment for Lyme - Cowden Condensed Protocol
11/21/11 11:42 Filed in: Lyme Disease Treatment|Lyme Disease|Lyme Disease Doctor|Lyme Disease Research
The latest Cowden protocol -- Cowden Condensed Support Program -- was featured last summer (2010) in an article in The Townsend Letter by the Lyme Disease Research Group. Personally, I had brilliant results from the original Cowden protocol and it’s gratifying to see Dr. Richard Horowitz’s very positive results as well. Alternatives to conventional antibiotic treatment for Lyme often seem difficult to track and trust, however there is no lack of scientific methodology from this medical group in Connecticut and the University of New Haven.
There is also good news in that the condensed protocol is more affordable than the original version. The protocol is available through Nutramedix or through your LLMD.
In Vitro Effectiveness of Samento and Banderol Herbal Extracts on the Different Morphological Forms of Borrelia Burgdorferi
by Akshita Datar, Navroop Kaur, Seema Patel, David F. Luecke, and Eva Sapi, PhD
Lyme Disease Research Group
University of New Haven
There is an alternative clinical treatment option gaining wide use, called Cowden Condensed Support Program, that utilizes several herbal extracts designed to eliminate microbes in Lyme disease patients. Richard Horowitz, MD, president of the International Lyme and Associated Diseases Educational Foundation (ILADEF), has prescribed this protocol for over 2000 of his patient and reports that it has been effective for more than 70% of them. The two herbal agents from the Cowden Condensed Support Program selected for this study are Samento (a pentacyclic chemotype of Cat's Claw [Uncaria tomentosa] that does not contain tetracyclic oxindole alkaloids), with reported antibacterial and antiviral properties, and Banderol (Otoba sp.), known to have antibacterial, antiprotozoal and anti-inflammatory effects.10-12 Both herbal agents are used during the first two months of Cowden Condensed Support Program, then in rotation with other antimicrobials for the duration of this 6-month protocol.
For further information about the Lyme Disease Research Group’s work, please listen to Dr. Eva Sapi in our Interviews with Experts series.
There is also good news in that the condensed protocol is more affordable than the original version. The protocol is available through Nutramedix or through your LLMD.
In Vitro Effectiveness of Samento and Banderol Herbal Extracts on the Different Morphological Forms of Borrelia Burgdorferi
by Akshita Datar, Navroop Kaur, Seema Patel, David F. Luecke, and Eva Sapi, PhD
Lyme Disease Research Group
University of New Haven
There is an alternative clinical treatment option gaining wide use, called Cowden Condensed Support Program, that utilizes several herbal extracts designed to eliminate microbes in Lyme disease patients. Richard Horowitz, MD, president of the International Lyme and Associated Diseases Educational Foundation (ILADEF), has prescribed this protocol for over 2000 of his patient and reports that it has been effective for more than 70% of them. The two herbal agents from the Cowden Condensed Support Program selected for this study are Samento (a pentacyclic chemotype of Cat's Claw [Uncaria tomentosa] that does not contain tetracyclic oxindole alkaloids), with reported antibacterial and antiviral properties, and Banderol (Otoba sp.), known to have antibacterial, antiprotozoal and anti-inflammatory effects.10-12 Both herbal agents are used during the first two months of Cowden Condensed Support Program, then in rotation with other antimicrobials for the duration of this 6-month protocol.
For further information about the Lyme Disease Research Group’s work, please listen to Dr. Eva Sapi in our Interviews with Experts series.