Lyme Disease: Misdiagnosed, Underreported—and Epidemic

February 15, 2011
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Lyme TickThis is yet another example of the US medical-industrial complex run amok. Lyme is one of the most serious epidemics of our time. Yet the opinions of 2% of the medical community are dominating the beliefs and practices of the mass majority of practicing Lyme physicians!

The number of Lyme disease cases in the United States has doubled since 1991. The Centers for Disease Control and Prevention estimate that there are nearly 325,000 new cases each year—making Lyme disease an epidemic larger than AIDS, West Nile Virus, and Avian Flu combined. Yet, only a fraction of these cases are being treated, due to inaccurate tests and underreporting. Each year, hundreds of thousands go undiagnosed or misdiagnosed, often told that their symptoms are all in their head.

You may well ask, “If it’s such a huge epidemic, why are we not hearing anything about it?” The media is silent because doctors and insurance companies alike dismiss it as being a hypochondriacal illness, just as they’ve done for years to sufferers of fibromyalgia and chronic fatigue syndrome. It can be expensive to treat—untold numbers have it, and there is no protocol that is completely effective for all patients, no sure-fire cure. And at the root of it all, one Lyme disease organization, in its desire for power and control, is pitting doctors against doctors, prompting health insurance companies to deny medical claims at an alarming rate, and leaving suffering patients stuck in the middle.

Lyme disease (named after the town of Lyme, Connecticut, where a number of cases were identified in 1975) is a seriously complex multi-system inflammatory disease that is triggered by the bacterial lipoproteins (BLPs) produced by spiral-shaped bacteria called Borrelia burgdorferi, also called Bb. Bb are difficult to isolate, grow, and study in the laboratory. Moreover, there are five subspecies of Bb, over 100 strains in the US, and 300 strains worldwide. This diversity is thought to contribute to its ability to evade the immune system and antibiotic therapy, leading to chronic infection.

Transmission of Bb occurs primarily through the bite of ticks, though fewer than 50% of patients with Lyme disease recall a tick bite. In some studies this number is as low as 15%. The disease may affect every tissue and every major organ system in the body. Clinically, it can appear as a chronic arthalgia (joint pain), fibromyalgia (fibrous connective tissue and muscle pain), chronic fatigue, brain fog, immune dysfunction, and neurological disease. Lyme disease may even be fatal in severe cases.

Standard medical treatment usually involves antibiotics. In some patients, Lyme disease can be fairly easy to treat, while in others, it can feel like a never-ending battle. One reason treatment is difficult is because Bb has an in vitro replication cycle of about seven days, one of the longest of any known bacteria. Antibiotics are most effective during bacterial replication, so the more cycles during a treatment, the better. Since the life cycle of Streptococcus pyogenes (the bacterium that causes strep throat) is about eight hours, antibiotic treatment for a standard ten days would cover thirty life cycles. To treat Lyme disease for a comparable number of life cycles, treatment would need to last thirty weeks.

In addition, there are frequently co-infections—other tick-transmitted diseases—that come along for the ride, most often Babesia, Anaplasma, Ehrlichia and Bartonella. If left untreated, their continued presence increases the length of the illness and prevents successful treatment of Lyme disease.

Chronic Lyme Disease (CLD) is a systemic, debilitating condition which persists despite antibiotic therapy. Nearly a decade ago, Irwin Vanderhoof, PhD, a professor at the New York University Stern School of Business, estimated that CLD cost society nearly $1 billion per year. That estimate has since skyrocketed to about $2 billion per year, including diagnosis, treatment, and lost wages, according to Contingencies, but this being an actuarial trade publication for the insurance industry, the real figure is probably much higher.

Four NIH trials have validated the severity of CLD. The well-documented studies looked at Lyme disease patients at various points from six months to nine years after antibiotic therapy was completed. As many as 62% of them were found to have arthritis or recurrent arthralgias, neurocognitive impairment (including objective memory impairment), neuropathy or myelopathy, persistent musculoskeletal pain, and dysesthesia (a condition caused by lesions of the nervous system that causes abnormal sensations such as prickling, itching, burning, or electrical shock), often with persistent, severe fatigue.

Despite these studies, many physicians continue to deny the existence of CLD, which can hinder efforts to find a solution—and without consensus from mainstream Western medicine, insurance companies will rarely provide treatment, and disability coverage is routinely denied.

As Raphael Stricker et al. noted in a 2005 article, the political battle over Lyme disease features two polarized medical camps. The dominant camp, represented by the Infectious Diseases Society of America (ISDA), adheres to the philosophy that the disease is “hard to catch and easy to cure,” and that chronic infection with Bb is extremely rare or nonexistent. The opposing camp, represented by the International Lyme and Associated Diseases Society (ILADS), views Lyme disease as an underreported and growing menace that often fails to respond to standard antibiotic therapy, resulting in a chronic debilitating infection that requires prolonged antibiotic treatment. This chart outlines the differences in their approaches to treatment.

This difference of opinion has resulted in frequent denial of treatment for patients with CLD and prosecution of healthcare providers who treat these patients, and over the past decade the “Lyme Wars” have become progressively more acrimonious.

ISDA is controversial not only because of its views, but because of serious conflicts of interest alleged against its leadership. In 2008, then Connecticut Attorney General Richard Blumenthal, now a US Senator, conducted an antitrust investigation of ISDA which uncovered serious flaws in its 2006 Lyme disease guidelines. “My office uncovered undisclosed financial interests held by several of the most powerful IDSA panelists. The IDSA’s guideline panel improperly ignored or minimized consideration of alternative medical opinion and evidence regarding chronic Lyme disease, potentially raising serious questions about whether the recommendations reflected all relevant science.”

One big problem is that most doctors follow a standard (but arbitrary) two-tier diagnostic protocol, requiring both a positive ELISA and Western Blot test. But despite the fact that this approach fails to detect up to 90% of cases and does not distinguish between acute, chronic, or resolved infection, these criteria have been used as rigid diagnostic benchmarks that have prevented individuals with Lyme disease from obtaining treatment.

Moreover, physicians not familiar with the complex clinical presentation of Lyme disease frequently misdiagnose it as multiple sclerosis, lupus, Parkinson’s, Alzheimer’s, rheumatoid arthritis, motor neuron disease (ALS, Amyotrophic Lateral Sclerosis—Lou Gherig’s disease), Multiple Chemical Sensitivity Syndrome (MCS), or numerous other disorders such as depression and anxiety, that are misdiagnosed as “psychiatric” or “all in your head”.

According to ILADS, other tests for Lyme disease include antigen capture, urine antigen, and polymerase chain reaction. Each has advantages and disadvantages in terms of convenience, cost, assay standardization, availability, and reliability. One hopeful area of research looks at live cultures under a fluorescent microscope, and measures the live organisms in the bloodstream, so one can keep retesting to see which therapies are working and which aren’t.

This is a critical difference. An antibody test only shows whether you have been exposed to the illness. A live organism test shows whether you are recovering or have recovered. A very promising live test, the Bowen test, was severely attacked by critics of long-term Lyme treatment and is no longer available.

Many insurance companies consider alternative tests “experimental and investigational,” and won’t pay for them. If more accurate tests aren’t allowed, the determination of Lyme depends on fallible tests, which greatly limits insurance companies’ financial involvement. Moreover, the therapies allowed by insurance companies are the most conservative ones—intravenous antibiotics at most—and only for a limited time under limited circumstances. If they don’t fix you, that’s just too bad!

Comparatively few MDs in the country are knowledgeable about Lyme disease; they are often called Lyme-literate MDs. Most LLMDs know about Lyme disease because they have studied it independently. But they are often harassed by the medical community, health officials, state medical boards, and insurance companies for diagnosing and treating Lyme patients beyond the standards set by the establishment. Notable cases were filed against Joseph Burrascano in New York and Joseph Jemsek in North Carolina, forcing them into bankruptcy or leaving them no alternative but to close or relocate their practices. A few Lyme physicians have had their medical licenses revoked. Some LLMDs have discontinued treating Lyme patients due to the harassment. Finding one nearby or who will take new patients can be a real struggle for patients.

There are a great many alternative therapies being used to treat Lyme disease. One reason for this is that while many therapies show promise, none is a definitive cure. Besides antibiotics, many integrative physicians prescribe a program of vitamins, nutritional supplements, herbs, and antiviral and antibacterial neutraceuticals.

Hyperbaric oxygen therapy has offered significant alleviation of symptoms, and intravenous vitamin C is once again proving successful. Traditional Chinese Medicine protocols (Chinese herbs, acupuncture, etc.) frequently achieve positive results—they are generally the same for Lyme disease as for Chronic Fatigue Syndrome and fibromyalgia, since their symptoms so frequently overlap. Other important research is being done by Dr. Rich Van Konynenburg, who also sees a link between Lyme and CFS. Warren M Levin, MD was the first to report on the high incidence of Lyme disease in Autistic children, which ultimately led to formation of the Lyme Induced Autism Foundation (LIAF). He is now trying to get similar activity for the Candida problem, a frequent “complication” of long term antibiotic therapy that usually is preventable.

What if you become disabled from Lyme disease? Currently, Lyme disease is not listed in the Social Security Administration’s impairment listing manual, so disability would be denied on the basis of an LD diagnosis alone. However, Lyme sufferers may apply for Social Security Disability or Supplemental Security Income benefits based on their resulting physical restrictions and functional limitations.

A documentary film, Under Our Skin, follows the stories of patients and physicians fighting for their lives and livelihoods, presenting a haunting picture of a healthcare system and a medical establishment all too willing to put profits ahead of patients.

In the months ahead, ANH-USA will work to educate public figures about the tragedy of long-term Lyme sufferers and how the medical system is failing them. This is a complicated problem, one that cannot be solved by a single bill in Congress or regulatory change. But as dominant as private insurance companies are in denying that long-term Lyme disease exists, the federal government pays for almost half of healthcare today in the US—that figure is higher, about 60.5%, if you figure in government subsidies for private insurance, and government purchases of private health insurance for public employees such as police officers and teachers—and could easily turn this situation around through its Medicare and other reimbursement policies.

80 Responses to “Lyme Disease: Misdiagnosed, Underreported—and Epidemic”

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       0 likes

  2. This was very interesting. I have been reading your blog a few times this week and today it is in my bookmarks.

       0 likes

  3. Bob Cowart says:

    A lot of good points here. Just a reminder, y’all, if you’re going to talk about this disease let’s remember to call it the right thing. It’s called Lyme disease (singular), not Lymes. It is named after a town in Connecticut, not a person, so there’s no apostrophe. This is actually important if you want to influence anybody who actually knows about this disease. Whether you are a doctor or just a layperson, if you’re talking to a Lyme disease patient you’ll tend not to listen to you very seriously if you don’t even know the name of the disease. If you have Lyme disease and you go to a doctor who calls it Lymes disease, turn around and walk out the door. Using the wrong name indicates that the doctor has not been to a Lyme conference or been educated about the disease.

    As someone who has been treated for Lyme disease since 2006, using all kinds of treatments including herbs and acupuncture and homeopathy, I can tell you that sometimes intravenous antibiotics are necessary. People worry about developing antibiotic-resistant bacteria, but even kids with acne take tetracycline for years. so do diabetics. Giving antibiotics to livestock grown for consumption is where the resistant strains are coming from. Entire herds of cattle are given abx from cradle to slaughterhouse, then we eat the meat. This is much more significant than the small fraction of the population with Lyme.

       11 likes

    • Ginger says:

      Thank you! I see this all the time on the forums because patients get the wrong name from their PCP. Then they have trouble even looking up information because they have an incorrect name.

         0 likes

    • Ginny says:

      “If you have Lyme disease and you go to a doctor who calls it Lymes disease, turn around and walk out the door.”

      That’s just what I felt like doing when my neurologist mentioned “Lymes disease”!

         3 likes

  4. Johann says:

    While I agree that Lyme disease is important, I feel that doctors are falling down in diagnosis of many, many diseases.

    Things I or people I’ve known have had and been told that “It’s all in your head.” or “There’s noting wrong with you include:

    * Sinus infections (On dozens of occasions. My friend, who was male was also not diagnosed, but believed enough that he was given pain medication.)

    * Pagets disease of the bone (”No, your head doesn’t really hurt, you’re really depressed!”)

    * Hypothyroidism (probably 3/4 of the people who have this are undiagnosed. Maybe more.)

    * Ulcerative colitis (”It’s just a stomach bug”)

    * Scarlet fever (”It’s flu. Go home and drink lots of liquids and get plenty of rest”)

    * Cancer (My friend’s mother died of cancer with a tumor the size of a watermelon that the doctor “never noticed” and her only treatment for this was Valium!)

    Keep pushing for doctors to recognize all the diseases they miss! Somebody has to do something about the American medical system!

       4 likes

  5. Skeptic says:

    I think it is interesting and disturbing that this article is not telling us of the April 22, 2010 outcome of the agreement with Blumenthal, that an independent panel review the 2006 ISDA treatment guidelines. The independent panel completed their review, and found:

    “A special Review Panel has unanimously agreed that no changes need be made to the 2006 Lyme disease treatment guidelines developed by the Infectious Diseases Society of America (IDSA), the nation’s pre-eminent authority on infectious diseases.”

    http://www.idsociety.org/Content.aspx?id=16501

    By failing to inform us of the outcome of this independent review, conducted under the close supervision of the Attorney General, this article reveals its strong bias – it wants to create fear and distrust of the IDSA’s treatment guidelines.

    It is easy to claim that scientists are completely biased by conflicts of interest, but in my experience the majority of academic scientists are sincerely motivated to do research and to serve on panels by a desire to improve human health and help society. Unfortunately, it is always possible to find a few bad eggs, and to create excessive fear and distrust of the whole scientific community by focusing on those bad eggs.

    It is also important to remember Attorney Generals are politicians, and so we do not know what the motivation of Blumenthal was when he challenged the IDSA’s guidelines. All we know is that he wasted a lot of time and money because the independent review process in the end supported the 2006 treatment guidelines. Actually, Wikipedia has this to say about Blumenthal’s motivations:

    “A Forbes piece described the investigation as “intimidation” of scientists by Blumenthal, an elected official with close ties to Lyme advocacy groups.[7] The Journal of the American Medical Association described Blumenthal’s investigation of the IDSA as an example of the “politicization of health policy” against the weight of scientific evidence, and voiced concern over a chilling effect on future decisions by medical associations.[12]“

       1 likes

    • KC says:

      Actually, Skeptic – you got your facts 1/2 right, in a kind of biased 1/2 ass way… The IDSA panel recommended numerous changes to the guidelines and there were some very narrow votes. The panel reviewing the guidelines was not independent and did not include physician’s from both sides. Nevertheless, the Nat’l Guidelines Clearinghouse requires that guidelines be updated every 5 years and this has not been done with the Lyme treatment guidelines from the IDSA.

         3 likes

  6. John says:

    Dr. Stephen Harrod Buhner has been treating Lyme for years and has written an excellent book, “Healing Lyme: Natural Healing And Prevention of Lyme Borreliosis And Its Coinfections”.
    The book goes into great detail about the spirochetes and how they hide and feed, although not in a dry scientific way. Also discusses using herbs to treat and their historic use along with a detailed description of what they help besides Lyme. Who knew Japanese Knotweed had a use! I cannot recommend this book enough.

       3 likes

  7. GERALDINE HALL says:

    In the 1980’s I got Lymes disease, that was the time when Doctors didn’t recognize it as a disease and the blood test was less than 50% true. I was given a heavy antibiotic for two weeks, that was suppose to take care of the problem…which it didn”t. I had all the health problems and lasted 8 years. I got rid of Lymes disease by taking high doses of garlic capsules and bee propolis with a Chinese herbal to kill the parasite that was attached to the virus.
    Yes, the government with the help of Nazi scientists were experimenting on a virus to disable the opposing troops. Like anything the government has a hand in, they will not admit to developing this strain of virus. That would mean that our government would be responsible to care for the people who got the disease.
    You do know that if you have had Lymes disease you cannot give blood because it remains in your system for the rest of your life and can be regenerated when your bodies immune system becomes weakened.
    Taking medical antibiotics as a long term treatment will weaken your body. But if you take natural antibiotics like garlic, bee propolis, aloe vera ,tea tree oil and many more natural substances that occur in naturally in nature…you will always be protected against the many germs that man creates to kill us.

       3 likes

  8. Bob says:

    Everyone here needs to take investigate what systemic yeast overgrowth/infection can do to the body and what causes it. I had LD and the antibiotics, I believe worked, unfortunately, they left my digestive and immune systems ravaged. Find a trusted website and follow their instructions on how to rid your body of systemic yeast (the bad guys in your digestive track who are immune to antibiotics and grow out of control when you kill the good stuff). The irony is that the symptoms of a severe yeast overgrowth are very similar to that of LD. In a nutshell, you kill the yeast by not feeding them (sugar, simple carbohydrates and anything that turns into sugar inside of us) and using anti-fungals (there are natural ones). Once you have rid your body (a month or so of very disciplined eating habits and anti-fungals) of the yeast, then you add the GOOD bacteria back to your digestive track (probiotics– the best being Threelac, in my experience). Then you learn to live a more healthy life. 90 percent of what we eat is pure garbage…. if it has a shelf life of more than a week, it’s not good for you. Our bodies are full of the chemicals in our food that our digestive tracts have no idea what to do with, so they sort of hang around in our organs and in our blood stream and cause all kinds of problems. ANY disease can be defeated by controlling what we expose our bodies to, particularly what we eat. And, no, I do not sell anything related to this. I am a SURVIVOR of LD and systemic yeast and now am as healthy as I ever have been. But it was the most difficult struggle of my life and took a ton of discipline. NO SUGAR… NO BREAD. etc… Investigate and try it. What do you have to lose?

       4 likes

  9. Andrea says:

    I live in Ohio and was diagnosed with Lyme in 2007. I was on high dose antibiotics for two years, along with a probiotic, to replenish the good bacteria that the antibiotic was killing. I am so thankful to have found the tick, and to get the bullseye rash, which is hallmark of lyme disease, because I didn’t have to go what most people go through in trying to figure out what the heck was wrong with me. My original family doctor informed me that my test came back negative. When I inquired about people having false negatives, and how it seemed the tick and the rash should be proof enough to start treatment, according to all of my research, she dropped me as her patient after 14 faithful years. I couldn’t understand it and was told that by law they were not obligated to give any explanation. At that point I went to an infectious disease doctor that did confirm I had lyme and started a three week treatment of anitbiotics. I had become my own doctor at that point and learned from reading hundreds of testimonials that it would only be enough to treat my symptoms and not erradicate the bacteria, which is what happens in most cases, which is also why it will come back days, months or even years later to haunt you. I’ve spoken with many doctors who tell me lyme ticks do not exist in Ohio. I have gathered numerous deer ticks from my dogs and tried to call health departments, etc…to show we do indeed have them, but no one seems to really care. Through my research I have found a doctor out of state that has helped me, and now I feel 100%, maybe because I got treatment early enough. It is sad to see so many people walking around chronically fatigued, migranes, joint pain, etc…who in reality have lyme disease and are not getting proper treatment. In regards to the question above on who gains from this denial? I guess it would be the insurance companies who don’t want to pay for long term antibiotic treatment. I hope this post helps someone out there who may be suffering, to get proper treatment from a lyme literate doctor.

       3 likes

  10. Jennifer says:

    It’s hard to believe that physicians would be harassed over treating a disease the mainstream at least acknowledges as real (even if it is misled about the severity/longevity/prevalence of it). And that more accurate tests are hard to obtain, or have even been made unavailable? Who is to gain from THIS denial? I can’t figure it out, since drug companies are even going to miss out if long-term antibiotic treatment is denied by insurance companies. I really don’t see the “why” behind this one. I guess “they” don’t want people to get better. Go, ANH! this world needs your help!

       0 likes

    • lymie says:

      Read “Project Paperclip” or Plum Island to find the answers to your whys?

         0 likes

      • amy says:

        yep — plum island holds the secret. But none of them want CLD validated as a ‘real ‘ disease
        because insurance companies would actually have to cover things; associations would lose
        control (power); on and on. Its all about status quo and it is really sinister. I know it sounds
        weird until you get into that world … it’s not conspiracy but ignorant and arrogant at the
        same time and ..the disease of our age: Greed ($)

           0 likes

  11. Mel Smith says:

    If you have been on any antibiotics, you have had the good bacteria depleted in your stomach and will possibly have an over abundance of Fungus in your body, so one thing I do and recommend is to take a good probiotic every morning to replenish the good flora that is needed to digest your food properly.
    MMS will kill the fungus in time but the problem is that fungus can proliferate so fast, that MMS can’t kill it fast enough.

    I have produced a Garlic tincture that will kill off the fungus but you have to go slow, as you can kill off to much at one time and will make you sick for a few hours if you drink to much of the tincture.
    You can get the info on how to make the tincture on my blog also, and it is very strong.

    I carry a spray bottle of MMS and Garlic tincture with me when I go shopping, as the MMS will kill all germs on the handles of the shopping carts, and the tincture will keep you from catching and viruses or bacteria through the air.So I spray some in my mouth when I enter the Market.
    I know my breath smells like garlic, but I don’t care, as that way people keep their distance from me.My blog again http://www.my-healthy.info/4u Stay Healthy.

       0 likes

  12. Mel Smith says:

    Great article from ANH, and I get their newsletter and they really spell out medical problems that most newsletters just touch on the subject.

    Lymes disease is a real problem, and the use of Antibiotics is so widely used in the USA that they can become useless for many diseases.
    There is a substance that I have been taking for over 31/2 years that will destroy the lymes bacteria and almost every other virus and bacteria that infects humans. It is called MMS and is the most powerful pathogen killer known to man. It is Sodium Chlorite, and when mixed with citric acid and wait 3 mins. for activation, it turns into Chlorine Dioxide (Cl02) gas.

    I am a 15 year cancer survivor and since I started taking MMS, I have not even had a cold, and I am 77 now and doing much better then most people my age.

    MMS then can be diluted with water or a non vitamin “C” juice. like pure apple juice, as that is what I use. I’ll tell you now, that the FDA is trying to ban the sale of it in the USA, as they claim it causes nauseous and could dehydrate the patient. That is the excuse they used to try to ban it.

    What about the thousands of Drugs that kill people if used the wrong way, and they still never stop the production of those dangerous chemicals.

    I have lots of info about MMS on my blog http://www.my-healthy.info/4u
    Then there is many testimonials and info on Jim Humbles website here
    http://jimhumble.biz and more links of interest.

    Jim has been talking about this for over 10 years and has a clinic in the Dominican Republic that he teaches people how to treat patients with many diseases. MMS is truly a product that everyone needs in their house, as it will kill any pathogen that may enter your body. It also removes all toxins and heavy metals.
    One thing Jim don’t mention is to add a little salt when you mix the MMS and citric acid while it is activating, as that seems to help in not getting a squeezing feeling when you consume the Chlorine dioxide mixed with some juice.

       1 likes

    • Tracy Nagy says:

      I response to Mel, he is correct and it works! I am a long time nurse and was looking for something for myself, this works. Can’t say enough good about it! And before everyone says “it’s a chemical and could kill you!” – well yes, but mixed correctly it kills the pathogens that are not supposed to be in our bodies and supports our immune systems. Jim Humble, can’t say enough good things about him either! This is patented so nobody can ever patent it – so he is not in it for the money! If I could I would give it to everyone but there are too many people who look at me weird and won’t try it – amazing because when I had severe fatigue, I wanted to do anything to get better. A great day was to get from the bed to the sofa to go back to sleep. Went through a ton of tests and they found nothing, but thought I was depressed. This solution worked when nothing else did and I’m feeling great! Thanks Mel for posting the info!

         2 likes

      • Mel Smith says:

        I’m glad you tried MMS and it worked for you…. I am still using it myself and now at 78 I am still doing fine.

        I still have problems getting people to believe me also , but I still keep on telling people to use it for most of their problems. So if I can help some one once in awhile, I feel I have done my job telling them about MMS and how to use it, and that is all I can do.

           1 likes

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