Lyme Disease: Misdiagnosed, Underreported—and Epidemic

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.


  1. Lyme Disease and my eye disease called Keratoconus are both getting bum raps. They are both medical diseases that patients need to pay for on their own. It’s ridiculous.

  2. If you want to read about how Lyme disease got to the US, read this book. It’s possible that Lyme was deliberately introduced and, for various reasons, there is disincentive to treat and cure it. This book is full of shocking information but it’s a must-read for anyone who’s been affected by this awful disease.
    Lyme Disease and the SS Elbrus from
    Ebook Price: $2.99 USD. 133440 words. by Rachel Verdon and published by Elderberry Press, Inc. on November 3, 2009


    1. I was diagnosed with Lyme disease as a result of live blood analysis by a naturopathic doctor. I was diagnosed with fibromyalgia by a VA Rheumatologist. After the Lyme spirochetes showed up in the live blood analysis I asked the VA to investigate whether or not I might have Lyme disease (not telling them I had seen a naturopath). They completely blew me off, and made it clear that they are not interested in pursuing the possibility.

  4. The neglect of people suffering from Lyme, Chronic fatigue and Autism together with other neurological autoimmune disorders is outrageous. It seems as if no one will ever take this seriously, yet so much could be done to do some real benefit to these people with antibiotics, antivirals and in the near future some immunizations. How many millions of people are suffering because of arrogance and quarreling among folks at the CDC and NIH? The health insurance and drug industries also need serious overhaul. New health care changes may help some but are not drastic enough. We are letting a few people ruin the chance for a normal life for millions now and who knows how many more in the future. Too bad the ill cannot march on Washington as the AIDS activists did. It sounds uncaring and not meant that way but many of us have far less stamina than those with AIDS. We cannot even get the health care given to the poor people of Africa. $400+ dollars a month for an antiviral is beyond the budget of most of us. We are crying out for help. Who is listening.

  5. Hi, Most Lymes maybe because the person has Celiac which makes the immune system go down…so it is easier to catch the Lymes. In order to treat the Lymes the Celiac must first be treated. … eat no dairy/gluten, vitamins/good oils, LDN.

  6. Are you aware that use of the fluoroquinolone antibiotics causes the same symptoms? You should check out the website How many of these individuals are really suffering from antibiotic poisoning? Regards

  7. Interesting if inconclusive…. I have been bitten by ticks here in N.Georgia from working in the shrubbery. I have a curious sensation in my feet at night, sometimes reaching the level of pain that disturbs by sleep. My doctor can find no cause and prescribed an antidepressant – which made me quite ill.

  8. Finally! I have Chronic Lyme. I live in a tick infested area. Children go into the woods to play. We must educate the public and especially those that are sick not knowing what disease or illness they may have. Think of the children! We must make headway on Lyme treatment before it’s too late!

  9. I really truely don’t get it at all because this has been around forever and still don’t know what they are looking at?
    How long will it take before they understand this is horrible to even think about.

  10. Have had lyme disease for about a year and a half. Went to an M D, told her my symptoms and how I was quite sure I had contracted the disease. Her response “you are lying”. “You know why I know you dont have lyme disease…because you did not have a red blotch where you claimed you were bitten”
    Wonderful country in which we live

    1. Find another doctor, a doctor that talks to her patient like that is borderline negligent…time to move on.

  11. Having been treated for late-stage Lyme disease in the mid-1990’s, it’s disheartening to read that we haven’t come much further than we were back then regarding the diagnosis and treatment of this awful disease.

    1. Christine: My daughter contracted Lyme in 1998. The doctors told me she was “making up” her symptoms and they drug tested her! She continued downhill & was hospitalized. They found Lyme from a spinal tap. Then lost it. ? She had a brain bleed in the hospital. Her leg is crippled & she has involuntary arm movement.
      We took her to every “best” doctor in the cities. Finally, we found a Lyme Disease Specialist who was able to help her.
      To this day, many of her specialists deny the Lyme diagnosis. Then I got it from a bite. Again, I was told I, too did not have it. Eight months later, my knees blew up like grapefruits. Fludid was extracted from them & sent to pathology. I had 2nd stage Lyme. My daughter had 3rd.
      I have seen no progress either, altho they are faster to take a blood test, which doesn’t always work. I had a blood test. My daughter had brain scans, blood test etc. It is a tricky disease. I don’t understand why it isn’t being given full attention. It is prevalent and seriously dangerous.
      Hope you have

  12. Thank you for giving such great information about Lyme Disease. I’ve struggled with this disease for over 30 years, been misdiagnosed repeatedly, and am now attempting to find effective treatment that doesn’t cause me to become even more ill (a major challenge with all the issues Lyme has caused to go wrong in my body).

  13. I was diagnosed with Lyme in May of 2010 and took five months of antibiotics. I also was diagnosed with a co-infection, Babesia. I had no tick bite and the only source of the disease is possible a sexual partner who,unknown to me, was diagnosed with Lyme. I stopped taking the antibiotics in mid-November. I seen to tire easily altho I still work out at the gym three days a week, pumping iron and walk four miles four days a week…and still ski. I should mention I an 82 years old and other than the diagnosis of Lyme, am in very good shape. I have read everything I can on the subject and am as confused as ever as whether I really have it or perhaps had it and am now free of it. I had both Elissa and Western Blot tests and the Western Blot, which was the most recent (October), didn’t look like I still had it. It is so frustrating to not know whether I really had it and it is gone, or did I have some other problem. The only real symptoms I had were fatigue all the time and for a short time a stiff neck (which is no longer the case). So, that’s my story,

  14. I was told last tuesday by a pain mangement doctor that there are no drugs for pain that work for Fibromyalgia, despite the fact that I have used narcotics for pain for 2 years. Today, I was told by my psychiatrist (who used to be a pain management specialist) of over 2 years that he does not believe fibro exists, that all my symptoms are physical manifestations of my mental health issues, despite the fact that I have been well stabilized for nearly 5 years. Our fight is not over either.

    1. Neurontin and Lyrica work well for me.
      I was told the same thing about all my symptoms being mental health issues. Don’t believe a word. Continue your fight. You are not crazy!

    2. Taking turmeric for me greatly reduces fibro pain as well as joint pain from Lyme disease. I get the powder at the health food store and dip empty 00-size capsules in it, and take one in the am and pm.

  15. The problem is even worse. European doctors are following the IDSA protocols, so we Europeans have exactly the same problems as in the US. Go further and it may be world-wide. How is it possible for such a small group with financial connections to drug, insurance companies or others? Won’t somebody please stop them? Maybe a Wikileaks to show them up for what they are.
    Jean Ludwig (Mrs)

  16. I implore you to take measures to reduce the risk of Lyme disease in this country, by jointly equipping our healthcare system with the doctors and the medicines needed to treat and to cure it, and also providing our schools with education on Lyme disease, that they may understand the disease and how to avoid contracting it. Disease is a source of misery to us as humans, and Lyme disease is one of the worst. Let us please help those who already have it as well as the rest of us, because we all need it. Thank you.

  17. Thank God, literally, for your article. This accurately describes the horrifying circumstances for my sister, age 57. I will forward this article, with the links, to all my family members. I am willing to donate money to this cause. So many, many people are suffering unnecessarily with Lyme and co-infections, due primarily to our health care system being politicized and run by insurance companies.

  18. I am one of the people you describe. I was given a very brief prescription for amoxicillen after a unusual bite reaction, which included a huge fever and bullseye swollen welt. The doctor even said he believed it was Lyme but it was only pills for 2-3 weeks. It should have been 40 days or more of doxycycline. I seemed to recover but I developed vision problems, notably strabismus-related diplopia (doublevision) and balance issues that have hindered my ability to walk greatly. I now am considered disabled physically. Despite this bite occurring in 1996, I only got serious treatment for it in 2008-10. The question still remains as far as whether or not I can recover physically. I had strabismus surgery but it wasn’t a cure. I had IV antibiotics but cannot even be sure if my Lyme is dead or merely not in great numbers enough to be active. I’d like my life back.

  19. I had Lyme Disease 2 years ago which triggered hepatitis. I cured myself in 6 months by taking large doses of D’Lenolate Olive Leaf Extract and of Vit C. I did not take any drugs.

  20. I have lived through what is written above. Lost m job, my retirement, and am now living hand to mouth barely making ends meet. My family abandoned me. My significant other abandoned me. His family abandoned me. My friends do not understand my pain.
    It is a lving hell.

  21. I have been treated by Hardin Memorial Hospital for Lyme disease. I first tried to get treated by the VA in Louisville, kentucky but they refused to even look at the tick bite. They told me I was delusional and put in my file that i am paranoid and crazy.
    Lyme disease is a government cover-up by the Free Masons to control World population.
    Lyme disease is laboratory engineered syphylis which was first created by the Nazis who were paid to come to the United States and work for the US Army in a secret lab across the river from Lyme, Conecticut.
    It is misdiagnosed and untreated for a reason!!

  22. I became disabled and was forced to give up my job as an investigative reporter for newspapers six years ago because of unrelenting pain. A year later I was diagnosed with chronic Lyme disease. I spent 2 years on a cocktail of antibiotics, which changed every three months. The first 90 days I spent most of my waking hours on the toilet, crying. Then for six months I took an antiviral usually used to treat eye infections in AIDs patients.
    The only reason I was able to force my long-term disablilty insurance company to pay out benefits was because of a federal district court decision on fibromyalgia, a diagnosis I’d had since the early 1990s.
    For 23 years I lived in the foothills of the Ozarks in Missouri. Ticks were a daily fact of life. My infectious disease physician believes I’ve had the disease for as much as 30 years. The damage to my body is extensive. I have severe arthritis in both knees and my feet. I have advanced degenerative disk disease in my lower back and lower neck. I’ve torn rotator cuffs in both shoulders, ulnar neuropathy, IBS, hormone and neuro-transmitter irregularities — you get the idea.
    But my oldest daughter is in worse shape. In addition to having chronic Lyme, she was exposed to multiple strains of toxic mold in a house she rented. For the past two years, she’s been lucky to be able to get out of bed most days.Her immune system is so compromised that almost any trip to a public place results in her getting sick.
    She’s been on Social Security Disability for years with diagnoses of PTSD, depression and anxiety.
    One of the reasons we believe the CDC has been reluctant to recognize chronic Lyme is that the bacteria was part of bio-warfare research in Nazi Germany. After the war, the U.S. brought the former Nazi researchers and the bacteria to an island across the river from Lyme, Conn. The island was the site of a U.S. government bio-warfare reasearch facility. The consequences of recognizing CLD could result in greater government liability than resulted from recognition that Agent Orange exposure was the cause of many Vietnam Vets’ illnesses.

  23. I am so glad to see that someone was addressing this nasty disease and maybe lighting a few fires under the medical establishment.
    I have lymes disease and my exgirlfriend of eight years has chronic lymes. She was called a hypochondriac, accused of seeking narcotics, referred to a psycologist. My mother, who was 86 at the time she was diagnosed, was given a 14 day antibiotic treatment, and told she was fine now.
    My girlfriend was lucky, I knew she wasn’t nuts, and I found a Lymes Specialist in our area who treated her and still does, as well as me. I took my mother to him but she passed away, probably weakened from her previous doctors short treatment.
    The problem is my doctor is retiring, and I am afraid that there is nobody qualified to take his place, you see, he has lymes disease too. He understood everything.

  24. My 27 Year old nephew died unexpectantly while hospitalized and being treated for what we thought was pneumonia and shortness of breath. The autopsy report has not come back but it is suspected he had a cardiomyopathy. I just found out he had been treatedfor Lyme disease about 15 mo prior to his death. He was always a fairly healthy person who rarely got sick. We were shocked since we thought he was being discharged. I was wondering if Lyme disease could have contributed to his heart condition.

    1. It is more likely that the overdose of antibiotics given without regard to permanent long term consequences was the cause of the cardiomyopathy. Antibiotics are some of the most toxic drugs on the market today. Think about what they do and remember that they are tested only for a week to two weeks, not several months. Imagine this being done to your body for several months or more with at least two antibiotics and who knows what else. All of this is done for a disease that is very difficult to prove. It’s a pharmaceutical company’s wet dream.
      I’m sorry for your nephew’s troubles and the loss you all experienced.

  25. Dr. Stephen Sinatra who lives across the river from Old Lyme, Connecticut said that if you have a tick bite from an attached tick, to get appropiate antibiotic treatment without delay.
    In my own experience I had a tick bite in 2004. The tick had not been on over several hours, but I had a red circle that stayed red for about 2 weeks or more. Do not expect a classical bullseye.
    I was told to watch it for 4 or 5 days more [mistake]. Then I asked for Azithromyocin antibiotic over the protocol Doxolin [sp]. I am ok, but was sick for 1 day after starting treatment.
    If one is bitten by a tick, properly remove the tick and rub in a Poly antibiotic salve. If the spot remains red for over 3 days, be very sure to get the best possible antibiotic for Lyme disease.

  26. Gerson therapy cures Lyme desease. I don’t know how you get insurance to cover Gerson therapy but I sure don’t let the insurance companies deprive me of a cure especially when I can do the therapy myself at home. Throw the antibiotics out the window.

  27. Has lypo-C been tried as a treatment for Lyme? My dog has it should I give it to her?Is there any danger of transmission from her?

  28. Good article. You might want to look into the work of Dr. Dietrich Klinghardt MD, PhD. He is an expert on Lyme’s Disease with the co-infections,( a fascinating man and teacher), addressing treatment without anti-biotics for chronic Lyme’s and other infections..
    What was not mentioned in the article:
    Heavy metals need to be investigated.
    Blocked detoxification pathways need to be addressed.
    The effect of mold and fungal infection that often accompany other infections.
    Transfer through saliva, semen and placenta.
    Thank you, Rika Keck
    NY Integrated Health LLC

  29. I have been chronically ill for seven years now due to lyme disease & coinfections that went undiagnosed for four years by at least 20 doctors (and I live in CT). I have tried every treatment possible including IV antibiotics for 18 months straight and IVIG for over a year and unfortunately I remain very sick and have continually gotten worse over the years.
    I live in horrible, unrelenting chronic pain through my entire body in my muscles, joints, and nerves due to severe inflammation, I have insomnia eventhough I have severe fatigue and go days without being able to sleep, I have peripheal neuropathy in my arms & legs,carpal tunnel in both hands, autonomic disorders such as POTS, dysautonomia, severe endocrine disorders such as Hashimoto’s thyroiditis and adrenals that no longer work & cortisol medication that does not help my severe fatigue, brain fog & memory issues that have been proven through spect scans and other brain testing, heart disorders including arrhythmia & lyme carditis, chronic digestive & autoimmune disorders and because of all my symptoms and lack of a life, depression & anxiety.
    I have tried every type of treatment available to me both natural & allopathic and have spent hundreds of thousands of dollars of my own money to get better to no avail and may need to file bankruptcy at some point. This has been a nightmare for me & my family that I can not even put into words. I live on ten medications with no relief and I am now limited to leaving my house once per month to go to the doctor. I am completely & totally disabled with no end in sight. I used to live a normal, high functioning, happy, fun life and it is heartbraking to me that I am now stuck in my house sick and in pain day after day, month after month, year after year.
    People don’t understand or even know how bad lyme disease can get (I was one of them once) and not enough money or research is spent on lyme when it is much worse than most main stream diseases that pour millions if not billions of dollars into research and education. It is also difficult for people to understand how horrible this can be when they know others who were treated quickly with two weeks or a month of antibiotics and walked away unskaved…why can’t I, they wonder?
    There is also a misconception is that lyme is only in the Northeast. Unfortunately, because ticks with lyme have been let go to run rampant for so many years lyme now invades the entire country. I have been seen and treated by top doctors and LLMD’s to no avail & it is certainly not for lack of them or me trying. It is just terrible that we have no where to turn or even hope for a cure.
    Thank you Alliance for Natural Health for this article and your work to educate people & public figures & may God bless all those in this world with devastating illnesses.

    1. Please investigate this: Systemic Yeast Overgrowth (infection). It is a condition that often results from antibiotic therapy. I have been down this road. Cleansed the years, Rebuilt my “good” bacteria in my digestive tract and eat a diet that does not benefit the yeast (feed them). It took me two years, but I prevailed and now have my life back. I recommend EVERYONE here who has not looked into this already to take it seriously, get ready for the battle of your life. But when you win, you are truly healthy once and for all. Best of luck to all. Bob

  30. One of my friends is so sure she has Lyme disease, she has suffered for years going from one Dr. to another, & yes she has been told it’s all in her head…She has told them about the round inflamed area & rash. I will mail her this article & maybe it will give her hope for the future..

  31. I was one of the lucky ones, I was unaware of a tick bite but I had been down on the ground spreading flowers over a grave in a deer frequented week later I was very sick, but my Kaiser doctor recognized the blotches and put me on a month’s antibiotics..But even more lucky, I had a nutritionist that knew that Una de Gato (made from an Amazon vine) was being used to treat lyme disease. I was still fairly sick for several months, but the una de gato tincture started helping almost immediately with the pain and the fatigue. I took 8 drops of the tincture in water (wait one minute) three times a day..after several months, twice a day, and then once a day for another year…Lyme disease free and no symptoms of other diseases… I know lyme disease affects each of us differently, but it is a treatment with no side effects, so it doesn’t hurt to try it…I have heard others that felt so much better after trying it.

    1. I know of three people who got better taking herbs for their Lyme disease, two used Cat’s Claw (Una de Gato) and the other one used unknown herbs, very likely the same thing.

  32. I didn’t see the author’s name on this outstanding, well-balanced work of art explaining about the lyme/co-infection war, which none of us patients asked to be put in the middle of!
    Yes, there is an epidemic of ticks biting folks/animals causing LYME/VECTOR-BORNE ILLNESSES in ALL 50 STATES, internationally; no state or country is exempt!
    What wasn’t discussed above is how the LYME/TICK-BORNE COMMUNITY has had their lyme/TB bills in congress 10-12 years now and not getting to 1st base with them.
    WHY? Because the “medical community” had paid lobbyists paying the House sub-committtee rep, Frank Pallone $505,000 last yr; previous yr.or prior was less than $500,000 to keep our lyme bills OFF THE AGENDAS to be discussed/cussed! Every year we have to start all over!!
    We’ve lobbied congress too but without the big $$$ since our money is spent on appts., expensive treatments of IV antibiotics, supplements, and other types of alternative therapies which our insurance companies refuse to pay for calling it as you said above, “EXPERIMENTAL THERAPY”.
    To really get a full understanding of what has happened to us lyme/TB patients, read PJ LANGHOFF’S, THE BAKER’S DOZEN, JUNK SCIENCE, which is all about the IDSA, infectious disease society stating one thing, and she has over 1,000 links showing what they stated just the opposite in studies/articles they wrote!
    Be prepared to spend a good month reading what the IDSA has done to us; it’s DEPLORABLE & UNACCEPTABLE!
    Thank you whoever for a very well-written, informed article above! We thank you for the justice you did writing this. KEEP UP THE GOOD WORK 🙂 hugs
    BettyG,Iowa lyme activist
    41 yrs. chronic lyme, 34.5 yrs. misdiagnosed by 40-50 drs; UNACCEPTABLE!

  33. I live in an area heavily infested with Lyme Disease carrying ticks. It is risky to do any gardening or yard work without taking extensive precautions to cover up all exposed skin. A tight head covering must also be worn. After coming inside, it is necessary to inspect your body from head to toe (yes, even between each toe), looking for the tiny ticks. They can be as small as the period at the end of a typed sentence, so, naturally they are easily missed. In spite of taking these precautions regularly, three years ago I found an embedded tick on myself the day after doing some gardening. Within a few days I developed flu-like symptoms. Fortunately I saw a doctor who treats Lyme Disease aggressively and I was put on the appropriate antibiotic and symptoms cleared up quickly.
    I cannot over stress this point: prompt treatment is essential. Without a knowledgable physician I might have been dismissed without treatment and this could have led to life-long health problems. I know a young woman whose Lyme Disease went untreated for more than a year. She has chronic arthritis-like symptoms and debilitating exhaustion. This complicates every aspect of her life. Another young woman who was my son’s nature guide many years ago developed a number of symptoms which her doctor attributed to a virus. She finally got a diagnosis of Lyme Disease only after suffering from sudden onset paralysis of her left side. She received treatment at that point, but it was too late to be effective and she continued to have the symptoms even after treatment. I am sure there are many people who have had Lyme Disease but don’t know it is the source of their health problems. This is an epidemic that has far-reaching consequences.

    1. I have had Lyme’s Disease for over 3 years. Saw a doctor the day after I was bitten (back of neck, next to my spine) who REFUSED to take the head of the tick out, saying “We don’t do that any more”. Saw 4 doctors who each told me ” there is no Lyme’s in Colorado”.
      Fortunately, a friend got me information from The Natural Health Alliance, where they have done extensive research. Tell your friend to get Una de Gato drops by Nutricology. I buy this from VitaCost as it is less expensive. There number is 800-793-2601.
      A person needs to take 5 drops a day, 3 times a day, but must work up to this as a “herkimer’s” (sp?) reaction is likely. Must also check with a good Naturapathic physician about other supplements or prescriptions being taken, as they may interfer.
      I have had tremendous relief with this. There is no cure for Lyme’s. One should not cut back on this dosage as health problems will only come back.
      I have copies of the original report, all medically documented if others would like them. It has been the best source of information I have found.
      God Bless, hang in there.

  34. Hi, I find this information on LD very interesting. It sounds to me we are left to defend ourselves medically. My cousin join the military, he was strong and healthy, he ran 5 miles a day with his mother before he joined. After joining, and going through basic training, he was diagnosed with MS or multiple sclerosis. He was discharged and sent home to deal with it. The VA started giving him all different types of medicine, and he was going down, down, until he couldn’t work anymore. He is in a wheelchair now and I think he might have the long term undiagnosed LD. Afterall, they pratice in dirt and wilderness and he might have gotten bitten by a tick. I’m I way off or do think there can be and is a lot of cases from the military sending folks home because of LD.
    Thank YOU!

  35. I have been a member of The Lyme Association of Greater Kansas City, Inc. since 1892. Served as Treasurer for some years and President for four years. The bite occured in September of 1988. I immediatly was severally fatiged. I worked with my family Doctor, tried every Idea we had but no answer. I retired in 1999 when I was 65. The 1890 year was a bad year, fatigue, memory problems and serious depression. In October I got an appointment with Dr. Joseph Brewer for Febuary 5, 1901. Dr. Brewer is an Infectious Disease Dr. In the first meeting he said we would have to determine if it was Chronic Fatigue, Fibermyalgia, or Lyme Disease. The Elisa test showed my anti- levels to indicate that with my symptoms that I should be treated for Lyme Disease.
    I took Docilion for a month with no results. Dr. Brewer then had a pick line installed so I went to the hospital daily for Rosephin through the pick line for 8 weeks. Following that I took Suprex daily. I was feeling much better, I even was able to paint my house that summer. In the fall the Dr. and decided that I didn’t need to continue the Suprex. I stopped taking Suprex and in three weeks all the symptom came back !!!!!!!!!!!!!!!!!!!
    So I have dealt with ever since. Strong ant-biotics, IV treaments, every treatment had some help.
    Now I am 87, Currently Lyme bacteria is inactive, but the years Lyme disease have left me with problems that are age related. Memory, short-term, Neurology problems hard to define. My Psychologist thinks I expect too much at this age but I want to think positively.
    I just do what I can.
    Edward C Olson

  36. Thank you for caring and publishing this article. I have cried in many a doctor’s office before being diagnosed with Chronic Lyme Disease. It takes a toll on body and soul, but it is good to know that there are others out there trying to bring this difficult disease to light.

  37. Excellent article. For once, a writer got it right. So often, reporters rely on the doctors who know nothing about the complexities and just say it’s no big deal.
    Who is the author of this? Again, excellent. Too bad that I’ve had to learn the hard way all you write about because there are no doctors in my state who believe in lyme or understand all the other tick-borne infections that often go with lyme. I am still very ill, unable to work, or even to go out of my apt. Very sad, indeed.
    Thanks for sharing the truth so that others don’t have to suffer so badly.

  38. To all who replied with your real names: be aware that insurance companies may see what you have written. They do searches on the web social sites just as prospective or current employers do. Coverage for lyme is often denied – and also used to deny life insurance applications. Be careful about using real names as it is a privacy risk. I hope all these names are pseudonyms.

  39. I don’t mean this to be unsympathetic, but doctors are doing this to a LOT of diseases. They know that all they have to do is say “There’s nothing wrong with you” and they don’t have to bother to make an effort or DO anything, and the patient still has to pay them.
    I submitted a list of diseases to another article about health today that doctors have told me or someone I know aren’t anything. Here’s a recap:
    * Sinus infection: It’s your imagination. A guy I know had a similar experience, except he got sympathy and pain medication, but still no treatment. Presumably, the doctor believed him because he was male. But he still got no treatment.
    * Hypothyroidism: You have anemia (which happens to be a symptom of hypothyroidism)
    * Paget’s Disease of the Bone: It doesn’t really hurt. You actually are depressed.
    * Ulcerative Colitis: It’s your nerves
    * Cancer: It’s your nerves. The person who went to the doctor with this died after 7 years of treatment with only Valium. The doctor never examined her or gave ANY tests, and at death, she had a cancerous tumor the size of a watermelon that the doctor never noticed!
    * Allergies: There’s really nothing wrong with you!
    * Scarlet Fever: It’s the flu. Drink plenty of liquids and get lots of rest.
    * Strep throat: No, you don’t have a sore throat, you have a kidney infection (from a doctor who refused to even LOOK at my throat!). Presumably, a kidney infection makes it impossible to have ANYTHING else wrong with you.
    I’d like to promote awareness for Lyme Disease, but I’d also like to promote it for all the other problems that doctors can’t be bothered with!

  40. “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.”
    Isn’t this unconstitutional? To dictate/mandate what doctors may or may not do, say, treat….is a crackdown on free choice, free thought, free action. This does not belong in America, the Land of the Free. I hope this is defended in this spirit in class action lawsuits. Doctors need to be free —imagine!—to practice as they best see fit for their patients’ sake. The less meddling from the government and insurance companies, the better off everybody will be. It seems that our system does not work that way, however and somehow this needs to be overhauled. Transparency and sunshine are the beginning: Thank you ANH! If we ourselves follow up with articles and exposees posted online, in letters to the editor, dialing in to radio talk shows, etc….we can help too. Eventually those under pressure will have to cave in, if there is enough mass exposee publicity going on.
    We can also ask trusted (that’s the key word) radio and tv show hosts to do a show about this.
    I was so pleased to read about the politician stating that in absence of alternative medical input, the science is incomplete. Bravo!! This man needs to be publicly praised, because the pressure to be part of the wolf pack must be enormous and it takes courage to step out and speak truly. Such people need our support in order to continue their good work in office. Applause!!!

  41. I had Lyme Disease for well over 10 years before I got a positive blood test due to the damage it did to my immune systems. To my knowledge “Chronic Lyme” cannot be cured but it can be managed. I was pretty close to dead at one point but all things considered I am doing pretty well now. I still have some bad days but they are now well outnumbered by the good. I do not use any antibiotics anymore and manage the disease via all natural methods. I really feel for all you folks out there who have been going from doctor to doctor without satisfaction. Been there, done that. If I can be of any help please feel free to contact me. Visit my website or email me directly @ [email protected].
    Best wishes and good luck to you all.

  42. Hi everyone , I have been reading all of the lyme disease comment. Its sad to read all of this. I believe that your answer is very simple. Of course all of you will be mad at me. The simple answer is Vitamin C. The doctors will not use it because its to cheap. There is no profit in using it. I have been using it 35 years. I works on everything. Dr. Pauling was one of the greatest Doctors that ever lived. You think using Vitamin C maybe a joke, Its not. People have to learn the truth about the AMA. That the real joke in all of this sad reason people are aloud to stay sick most of their life. Everyone that reads this please do yourself a favor. Try Vitamin C and see if this is the answer. You have to find your Torrence level of a Vitamin C. This is call saturate the tissues. When take to much Vitamin C you get diarrhea. When this happens this is the saturate level of Vitamin C. Then you would take less Vitamin C. This amount is where you want to try get in your body. If you start with 5 grams and then adjusted to where you do not get diarrhea. Vitamin C has a half life, so if you take 5 grams then a half hour later it will be 2.5 grams and so on. I like to give information to someone who will hopefully try this and let everyone else know that it works. I believe that everyone is everyone’s teacher. I also believe that God speaks through everyone to help others who need it. I know in my heart that this will work for everyone. Vitamin C is Cheap, Doctors do not care, you have to take care of yourself the doctors will not.

  43. I have treated patients with Lyme Disease using constitutional homeopathy. Most patients become asymptomatic within a few months, and, in addition, experience enhancement of overall health. Antibiotic treatment, on the other hand, is ineffective and destructive to the GI, endocrine,
    and immune systems.
    James F. Claire, D.O.
    Voorhees, New Jersey

  44. Lyme disease is endemic in Arkansas because but it’s never reported. Every family in the NW region has been affected in some way or other……not to mention other parts of the state. Ticks and Borrelia don’t know county boundaries.

  45. 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
    Then there is many testimonials and info on Jim Humbles website here 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. 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!

      1. 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.

  46. 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 Stay Healthy.

  47. 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!

      1. 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 ($)

  48. 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.

  49. 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?

  50. 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.

  51. 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.

  52. 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.”
    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. 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.

  53. 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!

  54. 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.

    1. 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.

    2. “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”!

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