Lyme Disease Research Database Independent reporting on all aspects of Lyme Disease

Lyme Disease Diagnosis

Finding a Lyme diagnosis: Mystery symptoms

Excerpt from my upcoming eBook.

I wake up and roll out of bed, heading to the loo. But when my feet hit the floor, I gasp at the explosion of pain in my ankle. Leaning against the wall to keep myself from toppling over, I stand panting for a moment. I manage to lurch across the room without putting any weight on my foot.

Sitting on the toilet, ankle throbbing, I break out in an ice cold sweat. My stomach doubles over in cramps. Nausea overwhelms me. Try to think, I tell myself. I recall hearing that intense pain can make you vomit. But what's wrong with my ankle?

The nausea increases but I cannot catch my breath. My lungs will not inflate. There is no oxygen. Losing all muscle control, I slip off the toilet seat, collapsing in a heap on the floor. 

Then I hear Evan’s voice somewhere nearby. It echoes through the tin can of my head. "What is happening to you?"
His face spins in front of me. He looks terrified. 

I might be dying. Right now. And I don't know why. There is no bliss, no white light. No welcoming angels. I am bewildered.

But in the next moment for no apparent reason, the crisis passes. I am able to take a breath. My body temperature begins to normalize. 

Evan helps me up off the floor. I still cannot put weight on my foot. He asks again. What’s happening? What’s wrong with your foot? I understand the questions, but have no answers. I ask how long I've been lying on the floor.

“Five minutes,” he says. 

What? I could have sworn I had limped into the bathroom hours ago. 

As he helps me back to bed, I glance in the mirror in disbelief. A zombie is staring back. My skin looks pale and lifeless, as if my face has been carved out of clay. 

Comments

Lyme Success Story - Samson

In spite of the turmoil Lyme can cause, many people are living happy and productive post-Lyme lives. I've had the fortune to connect with a number of them. Samson's story is a really uplifting example.

The first thing you notice about Samson is his upbeat attitude, in spite of the long journey he took back to health. He's a happy young man, originally from Detroit, who worked hard to earn his way into his dream profession, the music business, in L.A. To an outsider, it may appear as if he's always had a lucky star, and that may be true! But the thing he's really good at is not giving up. He's a vivid example of being proactive in your own healing.

His story, like a novel with lots of ups and downs and a happy ending, includes knee surgery for puffiness, an inflamed jaw, a frozen shoulder, tons of research, nightmarish
symptoms and three different protocols in eight months. It also features travel – lots of travel – around the US, to places such as the Mayo Clinic, to seek out specialists to diagnose and treat his illness.

Like shooting a squirt gun
Until he finally found himself back on the road to good health, Samson never stopped trying to find a way to heal from Lyme. The worst period for him was from age 21 to 28. At one point he visited Dr. Andrew Weil's clinic in Tucson, where he was directed to try an Eastern approach. He used alternative medicines and meditation. He read Weil's book Spontaneous Healing, and became a vegan for a year. That resulted in anemia, although it did give him a little relief from his symptoms. At another point, he fasted on water only for two weeks, in another attempt to get down to the root cause, which also resulted in a bit of relief. But it was hardly enough.

Samson was also taking Omega 3's, turmeric,
curcumin, and other supplements. But he says that when you're dealing with Lyme bacteria, taking supplements without taking antibiotics is like shooting a squirt gun at a person who is trying to do harm. It won't stop them, but it will give you the satisfaction of doing something.

curing Lyme disease
Finding confidence
A turning point came one day, when Samson happened on the trailer online for the acclaimed film about Lyme,
Under Our Skin. He proceeded directly to Lyme specialist Dr. Daniel Cameron in New York, and began antibiotic treatment for about three weeks. But his intuition urged him to continue seeking help, and it was only when he walked into Dr. Raphael Stricker's office in San Francisco that he felt confident about kicking Lyme.

Samson, who works as a talent manager and is in scout development in the music business in Los Angeles, has a lighthearted way of telling his story, but anyone who knows how difficult Lyme is, will recognize the cost, the resources, and the steely perseverance he had to devote to healing. Perseverance, and always listening to his intuition, have no doubt fueled his healing journey.

“I've always been very intuitive, and grateful for that!” he says.

Today, Samson has finally won his life back from Lyme, and he's feeling great and right on track, exactly where his intuition told him he belonged.

Join the LDRD to listen to Samson’s story.

Please keep in mind that your success story might just help lift the spirits of someone who needs it most. Call us if you would like to share.




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What's Lymph got to do with it?

Lyme disease typically clogs up the lymph system, which is foundation of our immune system. The lymph system plays the role of our body's clean-up crew or garbage collector. It gathers waste products, dead microorganisms, damaged cells, and bacterial toxins that would otherwise trigger inflammation anywhere in the body. The lymph system is linked to the tonsils, the thymus, the spleen, lymph nodes and the large intestine. These organs are all about taking out the garbage. I know how my kitchen stinks if one of us forgets to take the trash out. Don't let your inner garbage sit around. It's toxic. Get it moving.

But I know how it is. When you are sick with Lyme and your symptoms are kicking, exercise may be the very last thing on your mind. But nothing moves the lymph like getting some exercise, especially in fresh air. If the weather is not too vile, and you are physically able, motivate and take a walk. Take the dog, or round up a friend to accompany you. They can help you set up a regular schedule that you won't be so easily persuaded to drop. Swimming and jogging are great exercises for getting the lymph to move, if you can manage. If you can do a dry brush massage, do it. That's also a terrific lymph stimulator. However, use your best judgement, and do not use a dry brush if you have skin eruptions or any sort of rash.


Lymph massage through breathing
Going for a massage could be heaven, but if it isn't an option, you can treat yourself to a really effective self-massage in this simple way. Deep, rhythmic breathing is like giving yourself a massage from the inside. When you breathe out, contract your lower-abdomen muscles, and on the in breath, keep them contracted but allow your ribcage to expand. Sit up straight, imagine a string pulling gently up from your spine through the top of your head. Imagine the other end of the string pulling gently down from your tailbone. You needn't get fancy with your imagery to get into a really relaxing frame of mind. The breath is capable of doing all of that naturally. Of course, you can get through the day without scarcely taking a deep breath. But why do that, when it can be so helpful in our healing process? We just have to remember to direct our awareness in using it.

When we eat fresh fruits and vegetables and add fresh herbs to our daily meals, we take their vitality into our bodies for healing. Dr. Wolf Storl’s work is centered in his conviction that all plants, and especially wild plants that haven't been cultivated, are bursting with vital energy from the sun. In his 2010 book,
Healing Lyme Disease Naturally, he lists several herbs that strengthen the capillary vessels, regulate the blood pressure, alleviate arterial sclerosis, improve the lymph functions and support the immune system by stimulating the thymus (Storl, 2010). Always check with your doctor(s) before taking any herb. Herbs, just like pharmaceutical medicines, can have side effects.


Reference
Storl, Wolf D. (2010).
Healing Lyme disease naturally: History, analysis, and treatments. Berkeley: North Atlantic Books.


Comments

Stephen Harrod Buhner on mycoplasmas and coinfections


When standard antibiotic treatment fails, many of us give holistic or complementary protocols a try. It takes determination to battle the stealth pathogens associated with Lyme and its coinfections. Where pharmaceuticals bombard the body, herbs are more elegant and complex. They work synergistically when encountering these organisms.

As Stephen Harrod Buhner says, “The bacteria are evolving, we need to, too.”

Buhner, master herbalist and author, is well-known to many in the Lyme community for his informative, meticulously researched, and beautifully written books. His popular Lyme protocol has helped scores of Lyme patients, as it picks up where technological medicine leaves off.

His new work,
Healing Lyme Disease Coinfections is a reference book for people struggling with these common Lyme coinfections. There is increasing evidence that coinfections such as Bartonella and mycoplasmas are the rule, not the exception, when Lyme is present. How do these coinfections behave in the body, and what can be done to alleviate the problems they create?

Q: Who would you like to read this book, and what do you want them to walk away knowing?
A: Well, the book was written for both people with Lyme and Lyme coinfections and for health professionals and I tried to make it accessible to both groups. These kinds of emerging infections are what some epidemiologists and researchers are calling “second generation” infections. “First generation” are those bacteria that antibacterials were developed for after world war II. In essence, technological medicine already dealt with the easy ones.

The emerging infections, among which are included Lyme and its coinfections, are much more difficult. They tend to be stealth pathogens, much more clever when they infect the body, and they take a different approach. Technological medicine, while a great adjunct, is not capable, at this point in time (if it ever will be), of dealing with this second generation of infectious agents.

So, the purpose of the book is twofold. First: to begin giving a good general sense of how these infectious agents behave and why they do so. This takes a lot of the mystique away from them, lowers the fear level, and allows an intelligent response to treating them. This creates empowerment both for healing professionals and those who are infected.

Second: The standard medical model for treating infections is tremendously flawed and those flaws are rather glaring when it comes to treating stealth infections such as these. I am hoping the book will stimulate the development of a much different approach to treating infections, one that is a great deal more sophisticated than the one currently in use. The bacteria are evolving, we need to, too.

Q: Why should people with Lyme be concerned about coinfections and mycoplasma?
A: Coinfections make treating Lyme much more difficult due to the synergy between Lyme and other coinfectious agents. Research has found, time and time again, that coinfection is much more common than not. Those with coinfections tend to be sicker longer, have more difficult symptoms, possess a lower quality of life, and are much less likely to heal from the use of monotherapies such as antibiotics.

Q: Please give us a basic working definition of mycoplasma.
A: Perhaps the tiniest bacteria known, mycoplasma must scavenge almost all of its nutrients from its host by breaking down host cellular tissues. It has an affinity for mucus membrane systems and cilia and once in the body creates a kind of nutrient starvation in the host which results in a wide range of symptoms, much as lyme does.

Q: What is mycoplasma's relation to Lyme disease? How long have medical doctors been noticing its relationship to Lyme?
A: Mycoplasma, like most of the coinfections, is very new to medical doctors. Like most [coinfections], it has only come to prominence in the past 15 years or so, more so each year. As with the other coinfectious agents, it is spread by tickbite (among other things). As researchers have looked deeper into the Lyme epidemic, they have found that mycoplasma is a much more common coinfection than realized.

Q: Please elaborate on the issue of chronic Lyme -- the idea being that many of us go 'chronic' because we were not diagnosed early enough for treatment to be fully effective. How can a working knowledge of herbal remedies help?
A: About 60 percent of people who are infected with Lyme can be helped by antibiotics. Five to ten percent are not. Thirty to thirty-five percent appear to be helped initially but relapse. Added to that are the very large group of people who are never properly diagnosed with lyme. About half of those heal naturally over time, the others do not.

In consequence there is a large group of people that develop chronic Lyme. In that population, about half will respond to a fairly simple herbal protocol, the others will not. Herbs are much more elegant medicinal agents than pharmaceuticals in that they contain hundred to thousands of complex compounds that work together synergistically when confronted by disease organisms.

The plants have been here much longer than people and they have developed extremely sophisticated responses to infections. when we take them internally, those responses are medicines for us. The very nature of stealth pathogens and their wide impacts on the body make herbs a very useful approach.

In essence, successful treatment of Lyme infections needs to address: immune status, inflammation dynamics that are breaking down cellular tissues in the body (cytokine cascades), specific symptoms, and the long term damage, especially in the nervous system, that lyme causes. Pharmaceuticals are useless for most of those. Each of those problems can often be addressed with one or two plants due to the complexity of compounds in the plants.

Q: Please say a few words about the difference(s) between plain old resveratrol capsules and Japanese knotweed, and why you prefer whichever you prefer.
A: I always wanted to use Japanese knotweed root itself for treating Lyme, however, when I first wrote the book there were no decent suppliers for the herb in the U.S. It turned out that a number of resveratrols were made using knotweed root, in fact what they were were actually standardized knotweed root, so that is what I first suggested.

Now that the herb has proved so helpful to so many, a number of growers and harvesters have made it commonly available. I like the whole, powdered, root the best for several reasons. First it is much cheaper than the capsules. Second, I think that it is much easier to take these herbs if the powder is simply blended into liquid and then drunk. Taking all those capsules is a pain.

And, just my own preference . . . I like wild plants or those organically grown. They haven’t been mucked about with; there is much less standing between us and the plants.

Thank you, Stephen!

Buy the book

More Stephen Harrod Buhner
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Bulls-eye not the only skin rash in Lyme diagnosis

Lyme disease is found in patients whose skin rashes do not look like the bull’s-eye, or so-called “typical” Lyme rash. Skin rashes related to Lyme disease may differ conspicuously from the bull’s-eye type. Lesions may resemble numerous other skin conditions, such as those associated with contact dermatitis, lupus, and spider bites.

“Researchers note that multiple textbooks and websites prominently feature the bull's-eye image as a visual representation of Lyme disease.” They write, “This emphasis on target-like lesions may have inadvertently contributed to an underappreciation for atypical skin lesions caused by Lyme disease.” -- Some Visible Signs of Lyme Disease Are Easily Missed or Mistaken, Science Daily, Apr 22, 2013

Disregard for skin lesions that are unlike the bull’s-eye rash can be a mistake. Early detection and diagnosis is crucial in getting proper treatment, and early treatment is the best prevention for trouble down the road. Steven E, Schutzer, MD, Professor of Medicine at the University of Medicine and Dentistry of New Jersey-New Jersey Medical School,

Clinical diagnosis must consider any skin rash, regardless of its resemblance to the bull’s-eye. Other symptoms may include fever, flu-like malaise, and headache, as well as sensitivity to bright or fluorescent light. Doctors must also consider context, and whether the patient has been in an area where Lyme disease is endemic.

Misdiagnosis is problematic. Get a second, third, or fourth opinion if your doctor does not listen to your concerns, or if he or she disregards unusual skin lesions, or any of your symptoms.

This development in the evolution of Lyme diagnosis is exciting, because it can help medical experts to dispel one of the common myths regarding symptoms that indicate the presence of the Lyme bacteria. Our gratitude goes out to the medical research team who made this discovery, guided by Steven E, Schutzer, MD, Professor of Medicine at the University of Medicine and Dentistry of New Jersey-New Jersey Medical School.

Personal experience taught me what took medical science years to prove. Having had Lyme before these studies were conducted, I am one of the many who did not benefit from the latest research. Instead, doctors and dermatologists insisted that my severe skin lesions were a bad case of eczema and not an indication of Lyme. I was told to “take it easy,” and “get a handle on my stress levels,” and my skin condition would go away.

Nothing like a life-threatening skin rash to make you a little stressed.

Even after being admitted to the ER with a staff infection due to the increasingly spreading rash, doctors believed that only the bull’s-eye rash would signify Lyme. As a result, proper diagnosis and treatment were significantly delayed. Do not let that happen to you or your loved ones.




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Dr. Phil sheds light on chronic Lyme treatment

Dr Phil brought mass attention to “persistent Lyme disease” on his show last spring. Fashion model Stephanie Vostry who was featured on the show appeared sick, fragile, and miserable under the studio lights. Watching, my heart went out to her, and to weathercaster Brooke Landau and a longtime Doctor Phil staffer who were seated in the audience, and who also shared some of their experiences with what they termed chronic Lyme disease. If you are very ill at this moment, please judge for yourself how much you want to watch of the clip, which includes footage from Under Our Skin. This stuff is disturbing. And real.

Stephanie’s treatments have put her in financial jeopardy. She started an online campaign at
gofundme.com to raise money to pay for her Lyme treatments. So far she’s raised over $10,000 toward her $20,000 goal.

The show was difficult to watch, and I think it raised my anxiety level about 300%! I am grateful to Dr Phil for shedding light on this controversial disease and on the use of long-term antibiotics. Even though I’ve been in the state that Stephanie is in, I realize now how thoroughly I have disconnected from the memories of being that bad off. What amazes me about Lyme disease is that you can go through utter hell, physically, mentally, emotionally, spiritually and financially, and that you can come back to life. It really has been literally like being raised from the dead.

Have you watched the show? What did you think of the way
Lyme disease was presented to the public?

Watch
Under Our Skin for free on Hulu.


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NE docs wise to lyme -- but SE docs say no Lyme

The more I learn about Lyme, the more mysterious it seems. And not the disease so much, but the approach that’s taken by our medical professionals. It is a disease with layers of complexity. You can be tested for leukemia, for example, and the results are either positive or negative. Not so with Lyme.

Awareness of Lyme and early
treatment is increasing in the Northeastern US. However, I’ve seen anecdotal evidence that patients also get Lyme disease in the Southeast. On the LDRD Facebook page, in a recent post about Lyme in Georgia, several people living in a smattering of southern states -- Kentucky, Tennessee, Alabama, Georgia -- chimed in to affirm that they’d been diagnosed with Lyme and had caught it at home.

In a casual conversation with an epidemiology professor and veterinarian from Georgia, I learned just last week that there is no Lyme in our region. He agreed that there are other egregious diseases caused by ticks in the SE, but “we don’t have Lyme.”

My dentist here in NC told me the same thing. I imagine most
doctors in the area would concur.

All of this makes me curious. Consider this. When we as Lyme patients approach our healing from all the fundamental dimensions that we can, from body, mind, spirit and shadow, we’re taking more perspectives than most of our doctors are (there are exceptions). Our healing is more whole, and more effective in my experience, when we work on all of these dimensions.

When the CDC declares that there is no Lyme disease in a certain region, their evidence is not, I would argue, taking other perspectives. It is overlooking some equally fundamental dimensions. Cases of Lyme that are diagnosed in the SE, for example. Can we really just ignore that? Pass it off as an anomaly?

Doctors base their conclusions on empirical, scientific evidence. And correctly so. That’s the way it should be. But when there is anecdotal evidence, isn’t that also proof? Someone is surely diagnosing some cases of Lyme in the Southeast. What is going on there? This just doesn’t square with the rational conclusiveness associated with medical people. Could it be that doctors and the CDC are simply too busy, and the catalogue of diseases is too full, to include another?

And yet, the IDSA does seem to be changing. Ever so slowly. At least, in the Northeast they’re changing their approach to treatment and diagnosis in the early stage of Lyme. CBS news in Pittsburgh ran this story recently:
Doctors Change Treatment Recommendations for Lyme Disease.

As this news clip points out, doctors in the NE region are becoming aware of the critical need for early Lyme disease treatment. Patients presenting with a bull’s eye rash, who have caught it immediately, are likely to get antibiotics right away. They have a good chance of beating Lyme in its early stages.

This is good news, because of course the not-so-good news is that Lyme cases are rising alarmingly quickly in Pittsburgh. This year 150 cases have been recorded, up from 10 or 15 last year. 70% of the
ticks in the region are believed to carry the bacteria which causes the Lyme infection.

But apparently they stop at the border. So in the Southeast, we’re not dealing with Lyme. Except of course, anecdotally.

Interesting also to note that Romney is seeking to align his campaign with ILADS. Obama has also acknowledged the disease and its enormous financial implications. Awareness in Washington, DC is steadily but slowly increasing.

Lyme is a political issue, and not simply because of the definition of politics: many (poly) blood-sucking critters (ticks).


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Proposed Lyme legislation ignored by IDSA

In July, a Congressional subcommittee met to discuss a Lyme disease bill that is championed by a number of politicians in the Northeast US. The bill urges congress to approve a national strategy and money for research into prevention, diagnosis, and treatment of Lyme disease. A federal strategy would heighten awareness in all public health agencies.

The hope is that when people who are sick and infected with Lyme go to their local clinic, they may actually be able to receive medical help from doctors who understand the critical importance of early treatment. As it stands, clinics across the US are staffed by medical professionals who remain largely ignorant of it.
Lyme misdiagnoses are rampant and dangerous.

The powerful doctors’ group, the Infectious Diseases Society of America, was absent during the meeting and has remained silent about the bill. You may remember that in 2009 the IDSA opposed a similar bill, claiming that it lacked support from the scientific community.

Senator Richard Blumenthal, who, cosponsored the bill, states that Lyme disease has increased to epidemic proportions. It is the sixth most common reportable disease in the US. In the Northeast, it is second only to
chlamydia. These stats are according to Dr. Ben Beard, director of vector-borne diseases at the federal Centers for Disease Control and Prevention.

From the article “
Lawmakers call for national Lyme disease strategy,” in the Wall Street Journal, July 12, 2012: "'The tick problem is growing. The Lyme disease problem is growing," said Sen. Jack Reed, D-R.I., a cosponsor of the bill in the U.S. Senate. "This requires resources."

The legislation provides for the establishment of an advisory committee made up of researchers, patient advocates and agencies, as well as the coordination of support for developing better diagnostic
tests, surveillance, research and other efforts.'”

Will this be the year that legislators do the right thing and go on the attack against Lyme disease? I continue to hope that influential IDSA doctors – who see their own patients ravaged by the disease – will soon take a stand for more awareness of this increasing epidemic.

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Success story: Late Lyme diagnosis with a happy ending

Mary C. of New Hampshire feels that the time is now right to share her story. She has weathered severe storms to get to this point, including a grand mal seizure, two months isolated in a recliner and two years on the corticosteroid Prednisone.

“Yes, I’ve been prescribed the wrong medicines, and yes, it’s taken a long time to get well,” she says.

But her message to those who are struggling with Lyme? “Don’t give up!”

Mary’s Lyme diagnosis came at a price of many long years. Listening to her story, it seems incredible how many medical professionals offered her questionable advice and ignored obvious signs. For example, she was not tested for Lyme disease even after suffering the seizure. The doctor who examined her told her that “people have seizures all the time.”

She compares her situation to that of a prisoner, wrongly jailed for years, who finally meets a lawyer determined enough to investigate the truth. Finding the prisoner innocent, she is set free at last.

She says, “I’m 58 years old but I feel like I have a new life.”

As for spending so many years “in jail” with the wrong diagnosis, Mary is far from blaming doctors and medical experts. She reminds us, “that is why we call it practicing medicine. We haven’t perfected it yet. And chances are good that those doctors were doing their best with the knowledge they had at the time.”

Admiring others who have told their stories of healing from Lyme, she keenly observes that several are professional athletes, such as Perry Fields, who possess a deep inner drive to push themselves with Herculean effort.

Mary, who has owned and operated an automotive business with her husband for more than 30 years, says, “I’m not an expert in anything. I only have a small amount of that type of drive. I want to talk to people who are more like me.”

Although she may not agree, personally I think Mary’s long struggle for a correct Lyme diagnosis also contains a ring of heroism.

For 26 years she worked her way through a confusing maze of misplaced assumptions and misdiagnoses. She was told she had Lupus. But the diagnosis never felt right to her.  

At one point, a doctor pointed out there was no way Mary could have Lyme disease, because of course, that only existed in Lyme, Connecticut!

At last, in a particularly heart-rending turn of events, both Mary and her mother were diagnosed at the very same time. Her mother died of cancer just five days later. However, she got the opportunity to tell her daughter that she could go and rest in peace, knowing that Mary had finally received a correct diagnosis and could now get the right sort of treatment.

After 26 years, she finally knows what she’s dealing with. And now, this self-described, “overweight, carbohydrate junkie” begins her days with a cardiovascular workout on the elliptical and bike, and eats healthy foods. It’s been a long journey, but today she is well on her way to living healthy and Lyme-free.

Her nurse practitioner’s advice? “Whatever you do: keep moving, keep moving!”

Mary will never forget the afternoon she spent, back in 1986, helping a friend clean out a shed.  That day a tick bit her ankle, but she didn’t discover it, embedded and engorged, for two days.  Her leg swelled and she developed a bullseye rash. At the time, neither she nor her doctor knew anything about Lyme. They assumed she was having an allergic reaction to the tick bite, and he prescribed Benadryl.

And that was just the beginning.

I invite you to listen to Mary tell her story in her own words.


Join the LDRD to hear the interview and over 20 other success stories along with over 20 interviews with Lyme experts.

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Lyme Diagnostics

If you suspect you have Lyme, doctors can form a iagnosing Lyme Symptoms">diagnosis by your considering your symptoms, history and serology.  Most of the Lyme literate docs whom I have interviewed say they will start treatment on the basis of a clinical diagnosis, so the patients aren’t left waiting and wasting precious time before killing the Lyme bacteria.

Typical Lyme tests are the Western Blot, ELISA and PCR. However, these tests have limited clinical value. Only when the infection is active can the bacteria be measured and identified.

Lyme bacteria has survived throughout millennia because it has the ability to cloak itself and evade the human immune system. Therefore, it can be impossible to detect, using such serology tests.

Aside from a clinical diagnosis, there are some new approaches. A Wisconsin research and education company, NeuroScience, Inc, working in conjunction with an independent laboratory called Pharmasan Labs, Inc, have teamed up in the name of improved diagnostics for Lyme disease and other illnesses.

Dr. Gottfried Kellermann, CEO of NeuroScience, Inc. states on the company website: "It is my life mission to improve the lives of people through better science."

NeuroScience has created a diagnostic tool called My Immune ID-Lyme, which “utilizes the immune memory and cytokine alterations to identify any B burgdorferiexposure (current and/or past) and therefore identify Lyme disease even when B burgdorferi is successfully evading the host immune system or is currently dormant.”

If you’re able to communicate well with your doctor(s), encourage them to use newer, better ways to test for Lyme.

The next step, of course, is successful treatment.

Once you know you have Lyme, I encourage you to treat it from every angle: intentional, behavioral, social and cultural. This integral healing approach leaves no stone unturned. It includes body, mind, spirit and shadow.

For further information on treating Lyme from every angle, or  the cross-training approach, see the 100 Perspectives.

Be fearless in fighting Lyme and insist that your doctor is too.

Be well!
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Lyme Success Story! Treating every angle

Not too long ago, Jerry was preoccupied with his professional responsibilities and other commitments. Resolutely running the treadmill, he pursued his multiple roles as a husband, father and self-described Type A quite unconsciously.  But around May of 2010, he began “to feel really crummy.”  Not merely tired from work, he was exhausted. He ached all over, his glands were swollen and painful, he suffered headaches and disturbing muscle twitches.

At first he brushed it off as a bad flu and continued on his daily routines. He did not have a bull’s eye rash.  But then his symptoms took a turn for the worse, the muscle twitches increased and he felt he was losing control. He decided it was time to get tested for Lyme. The result was negative. However, test results were positive for an infection that typically accompanies Lyme: Ehrlichia. Antibiotic treatment began but he continued to feel worse, even taking Doxycycline. At that point, he took the initiative to search out a doctor in Minnesota who specialized in Lyme and could really help him.

Jerry found Dr. Karen Vrchota. She sent his blood to be tested by IGenEx, in Palo Alto, California. In addition to three co-infections, Ehrlichia, Bartonella and Babesia, Jerry was positively diagnosed with Lyme.  She recommended further treatment including some of Dr. Cowden’s protocol, such as Samento, Burbur and Parsley tinctures.

As Jerry worked with Dr. Vrchota, he branched out to discover many more proactive methods that would allow him to feel in charge of his own therapy. He realized that truly healing from Lyme disease demanded coming at it from every angle, not simply by taking antibiotics and herbal medicines. At the suggestion of Dr. Cowden, he focused on getting rid of the mercury, aluminum and other heavy metal poisons and toxins in his system. He adopted a new approach to exercise and nutrition. Following the advice of Dr. Burrascano, he began cardio as well as strength training exercises. He talks about the difference he began to feel as he focused on heating up the blood and getting it flowing. Spirochetes hate heat and cannot survive it. Therefore, physical exercise is super important to include in a Lyme disease protocol.

In his search for wellness, he has been seeking advice from experts in many fields, psychological as well as physical, spiritual as well as emotional. He feels confident that he’s now about 95% healed, and is eager to reach out and help others facing similar health challenges.

Over the past couple years, Lyme disease has become one of Jerry’s greatest teachers. He has rediscovered the simple joys -- tossing a ball with his kids, slowing down each day to practice mindfulness meditation and noticing life’s small blessings.

Hearing him tell his story, it’s easy to see that this once-Type-A person has a loving and generous heart.  You can sense that something in his nature has softened and profoundly changed and evolved.  He talked movingly about how he is now deeply committed to “giving something back,” and I’m really pleased to be able to share our recent conversation in our Lyme Success Stories series. You’ll hear him discuss the challenges he faced in getting properly diagnosed, his treatments, protocols, exercise routines, and the doctors and other experts who are guiding him as he turns his life around.  

Jerry has redefined the meaning of success in his life and feels endless gratitude for the things we tend to take too easily for granted. By approaching Lyme disease comprehensively and from every angle, his healing is happening on many levels of his life. Yours can too.

For additional information on healing Lyme from every angle, see Beat Lyme!

Join to listen to the interview.
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An integral approach to healing from Lyme

Lyme affects all the systems in the body, including the brain and therefore the mental state. It seems important to recognize that Lyme, as a complex disease that can be very hard to heal from, must be treated from as many angles as possible.

I’m not writing about this approach simply because I read about it somewhere and thought it sounded good. I’m a walking, talking example of someone who beat Lyme because I practice an integral approach myself. It begins with recognizing that in any given event, there are four perspectives that represent the fundamental dimensions of an illness, as stated in the post above:
  • Physical state
  • Mental state
  • Cultural views
  • Social systems

We’ve already touched on the first two angles, and explored how you can see one but not the other. The doctors can treat your physical body with medicines while often missing entirely your state of mental-emotional health. Sometimes mental problems can clear up when only the body receives treatment. Other times it takes another approach.

Cultural views, the third angle, include other peoples’ thoughts and opinions about your experience. Think about the impact that your family members and friends’ ideas about your illness have influenced or affected you. Whose advice do you seek out in times of trouble? Your psychologist, your BFF, your mom, and the opinions of other important tribe members all play a role in your approach to healing Lyme. And in many cases, this has proved itself not a simple disease to heal. What happens to the people who have experienced recurring symptoms?

Say, for example, that your manager at work came across an article that restates the IDSA’s guidelines for Lyme treatment, and he knows you have completed the requisite three weeks of doxycycline when you suddenly begin to complain of arthritis or fatigue -- again. If he believes hands-down that the IDSA must know the optimal treatment for Lyme, he may not believe that you are still not well. He may even suspect that your symptoms are “all in your head.”

I remember when a writer friend whom I trust and admire queried me about my pain. I had confided at lunch that I was having trouble writing because I couldn’t remember from one sentence to the next what I had just said. You look fine, he insisted. I was hurt. It felt like betrayal. He didn’t believe me, and I hated being put in the position of having to defend my illness. The opinions of others still hold sway even if they’re wrong.  On the other hand, when others believe in us and hold a space for our healing, it can feel as liberating as fresh air. It opens the way for our progress.

The fourth angle of the integral approach is the social systems. Think of the health care system, and whether or not you can afford access to coverage. Can you not get access because you’ve been denied, or because you had to quit your job and can’t afford COBRA? Systems are simply there whether you are aware of them or not. The emergency room, for example, is a social safety-net system. If you haven’t been privy to a doctor’s care for one reason or another you may wind up in the ER in a health crisis. That’s an example of falling unintentionally into a social system that may be your only option. An example of an intentional use of a system may be your own research into alternative care, which leads you to an integrative doctor and a trip to the pharmacy for herbal tinctures and supplements.

As you can see, the social systems available to us are largely influenced by where we live, which country, and how near or far we are to the kind of doctor or medical team we need. Many people with Lyme disease have come up against the cruel realization that not enough medical professionals are educated about diagnosing or treating Lyme. Numerous people have had to travel by air across state lines, sometimes thousands of miles, to get to a doctor that will give them appropriate treatment. Social systems are not incidental to the story. They lie at the heart of it, influencing the outcome just as cogently as do the other three angles.

Bear in mind that these four perspectives are not unique to illness but always arise naturally, and always together, in any given event you can think of. Even when you’re healthy you can still identify all of these dimensions. Each area only tells a part of the story. Each part contributes to our experience as a whole. They cannot be separated.

Once we recognize how these dimensions work together in our day-to-day life, it’s easy to see where things are functioning well and where they aren’t. Being aware of dysfunction gives us a much better chance to change it. And to get better.

Learn more about this approach on the
Beat Lyme page.
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How to recognize Lyme symptoms in your child

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.


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Start where you are. Fight chronic inflammation.

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.


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Healing from Lyme - Part 3

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.


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Healing from Lyme - Part 2

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.  


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Healing from Lyme - Part 1

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 r Cowden's updated Lyme protocol">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?


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What's wrong with conventional medicine (and what to do about it)

An insightful article on the Doctor-Patient Relationship written by Dr Lissa Rankin points out some of the specific problems created and intensified by our orthodox medical system. Rankin is searching for a more vital and meaningful way to relate to her profession, her patients and her role. In her post, she perceptively describes an enormous & paradoxical problem with what she calls Old Medicine. Lyme disease patients get to be unwilling experts in Old Medicine. Picture the doctor with his/her hand on the doorknob, nodding in your direction as you wait in your underwear on a cold table under florescent lights that are driving you mad.

From the patients’ perspective, you can boil it down to this: You want to be treated like a whole person, not a slab of meat.

From the doctors’ perspective, you want to practice medicine without losing your own health and/or being forced to put your soul on hold.

Dr Rankin shows how the rules of Old Medicine are intolerable, imposing unsustainable stresses on doctors and patients alike.  She accurately describes the ways in which ways doctors get shafted in this system. Then she turns the tables, articulating how our current cold-as-a-spectrum ‘managed care’ feels from the patients’ perspective.

What’s wrong with conventional medicine and what can be done about it

Our medical system is flawed. The question is not how bad is it, or how thoroughly can we condemn it. The question is, can it be fixed, and if so, how?

Most people are aware that there are 2 types of medicine:
1. Conventional, which treats the illness.
2. Alternative, complementary, holistic, or integrative, which treats the whole patient.

However, there is also an emerging 3rd category: Integral, which includes the first two types and treats the physician as well. I’m old enough to remember when ‘health food’ stores were totally square. Now, Whole Foods, just one example, is a billion dollar business. Our collective consciousness around health issues is constantly expanding, although not as quickly as some of us would like. There is evidence that Integral medicine is being quickly adopted by health-care practitioners around the world.

Here’s why:

Using an
Integral framework is like putting on a new pair of specs. It gives us a good look at the big picture without excluding the details. The Integral model recognizes that every event has at least four dimensions. They represent the perspectives: I, we, it and its. How does this apply in analyzing our medical system? Here’s how: Factors in all four dimensions affect both the cause and the cure of an illness. The all-too-often murky process of diagnosing and treating Lyme disease provides a classic example of why an integral medicine is necessary.

Four dimensions of medicine and why all four are important

1. Conventional medicine tends to strictly abide in only one of those four dimensions. It deals almost entirely with the physical organism using physical interventions: surgery, drugs, medication, and behavioral modification. Orthodox medicine believes essentially in the physical causes of physical illness, and therefore prescribes mostly physical interventions. Lyme disease, if caught early enough, can be greatly cured and controlled with antibiotics. The integral model doesn’t claim that this objective dimension is unimportant, only that it is just telling one-fourth of the story. (The Integral Vision, by Ken Wilber. p 92) Which leads us to the next quadrant:

2. Unprecedented interest in Alternative care makes it clear that many people (doctors included) recognize that our interior states, i.e. our emotions, psychological attitudes, imagery, and intentions, play a crucial role in both the cause and the cure of even physical illness. Conscious use of imagery, visualization, and affirmation have been scientifically proven to affect the management of most illnesses, and including these practices is increasingly more accepted in comprehensive medical care. (p. 92) Affirmations were extremely important to me while Lyme was in an acute stage. Repeating bits of positive phrases helped me focus my Lyme-addled brain and gave me a reason to believe I was eventually going to be alright, even though more than one doctor had advised me to go on disability, climb into a wheelchair and settle in for life. For me that wouldn’t have been life, but death.

3. However, this subjective dimension is still only one-fourth of the whole picture. Nothing exists in a vacuum, least of all human consciousness. We are embedded in shared cultural values and intersubjective factors that affect our state of health and our journey through illness. Cultural views and judgements affect us. In my interviews with Lyme patients over the years, I’ve noticed a significantly common thread, which is that we’ve all been told, at one time or another, that “it’s all in your head.” We may not give much credence to the dimension of cultural views, and yet our spouses’, friends’ and doctors’ subjective opinions about our health affects us (sometimes dramatically) whether we like it or not.

4. The material and economic dimension, causative factors in both disease and cure are rarely acknowledged. Yet, these factors are central to the issue, not besides-the-point. This is the Social system that delivers your medicine, sets the limits on your managed care, and accepts or declines your access to insurance. Are you wealthy? You may be fortunate enough to afford concierge medical care. Or are you in the economic class that is relegated to using the ER when things get bad enough? The Social system dimension or quadrant also includes your access to clinics and nurses and their availability in your region. In other words, if you can’t reach the clinic you need because you are too sick to drive or it is too far away, it cannot help you.

Integral medicine includes all four of the above dimensions. I’m inspired by doctors like Lissa Rankin, who intuit that Old Medicine only tells one-quarter of the story, and that in order to improve we must acknowledge the other 3 quadrants or dimensions. In the
100 perspectives we categorize our interviews, articles, and other info into all four quadrants. Integral medicine is gaining popularity around the globe, and Lyme literate doctors, because they have to deal with us Lymies on so many different dimensions of health, may be on the leading edge.
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Wanted: YOU to live a healthy post-Lyme life

"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!




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Diagnosing Lyme: Lies & half-truths

It irks me to see inaccurate info about Lyme on health-oriented blogs. For example, I just read the sentence: "Lyme is completely treatable. No need to panic," and now I'm really bugged. No, I don't want everybody to panic. However, it's just such unfounded casualness about Lyme that creates the illusion that one needn't seek a Lyme aware doctor's advice right away, at the first suspicion of Lyme symptoms or the presence of a tick bite. There is absolutely no evidence that the person making the claim has any awareness of just how dangerous, and multi-stage, Lyme can be when left untreated.

The same blogger also cavalierly states that "a characteristic bull's eye rash will show up within 3 to 30 days." GRrrrrr! Not true. Up to 50% of people with a Lyme infection will never show signs of the circular, red skin rash. Diagnosing Lyme is a tricky thing, part art, part science. Even ILADS doctors differ in their approach to diagnosing Lyme. I skim the blogs like a watch-dog, looking for useful information. I'm vigilant. I can sniff out a lie about Lyme faster than you can say "neuroborelliosis."

How is the blog-skimming public supposed to become informed, with half-truths and lies circulating so freely? The mis-truths and misinformation all stems back to the opinion of the CDC -- in the form of the IDSA -- that Lyme is not a serious disease. I am really looking forward to following up on the results of the antitrust investigation into the IDSA's guidelines for the treatment of Lyme. Stay tuned. I'll be posting whatever I sniff out right here.
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Lyme Disease Mistaken for MS



Getting a correct diagnosis for Lyme disease is a significant step toward getting treatment, yet countless patients are misdiagnosed from the start. Here is a recent account of a North Carolina man who self-diagnosed, after having been put on medication for multiple sclerosis. The article below is from the Raleigh Newsobserver.com, February 19, 2008.

Patients push boundaries of Lyme disease debate.
Two factions hold opposing views on prevalence of tick-borne disease.

Jean P. Fisher, Staff Writer

Even as mounting evidence suggests the state may harbor more tick-borne illness than records indicate, patients with symptoms that match Lyme disease say doctors continue to turn deaf ears to their complaints. They say people are needlessly going untreated or misdiagnosed, leading to advanced illness and even disability. Read more about lyme disease diagnosis.

Dave Tierney of Cary thinks that's what happened to him. Plagued with unexplained fatigue, muscle aches, eye pain and other problems for years, Tierney was diagnosed with multiple sclerosis last year. In June, he left his job as a pilot with Delta Air Lines and began getting long-term disability benefits.

But after researching his symptoms on the Internet, Tierney became convinced he had chronic Lyme disease. An infectious disease doctor and a specialized laboratory test confirmed it. After three months of intravenous antibiotics, Tierney finds his Lyme symptoms much improved and he is back at the controls of an airplane.

"I could have been on MS medicine for the rest of my life," said Tierney, who returned to work this month.

read the entire article here
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