The GREAT Lyme CONTROVERSY: Why this disease is so politicized

More to be added and lots of edits needed, but so far, it's readable!

All my friends ask me "What is so controversial about Lyme? I don't get it. It's a disease that everyone knows about." Au contraire, my friends! This is the sickest, dirtiest, nastiest controversy over a disease I have ever come across. On top of dealing with a late-stage disease that cripples your body, mind, and sense of self and sanity, 85-90% of medical professionals have never heard of, don't believe, or don't want to believe that this disease exist. WHY? It's a long convoluted story and I explain it in below in detail.

If you want the short version (really there isn't one but I'll try), it goes like this:

Late-stage Lyme, it doesn't exist. Why? Because the IDSA, a medical society/group of 18 or so infectious disease doctors who write the guidelines for diagnosing and treating Lyme, say it can be treated in 28 days. Fine, if you just got bit (maybe, even then I know people who needed a year of treatment).

But those of us harboring this disease for years (late-stage Lyme) are incredibly ill and need years of treatment to get better (as proven by ample clinical evidence). SO, IDSA docs (and most major hospitals' infectious disease docs follow the IDSA protocol) say after 28 days of treatment, you are CURED! If you still feel sick, well you have "POST-LYME FATIGUE" and you just may be depressed or something and DEAL WITH IT. For the REST OF YOUR LIFE. Really? I don't think so. All of us late-stage Lyme patients are still sick after 28 days of treatment; that short amount of treatment doesn't even BEGIN to touch a this disease, whose spirochete shaped bacteria reproduces sometimes everyday, sometimes every month, sometimes every year. How can you kill all those buggers in 28 days?!!

I am a patient and the clinical evidence of ILADS doctors (who treat all late-stage Lyme patients) is compelling, and the CT Attorney General even brought a lawsuit AGAINST the IDSA (the first time legal action was brought against a medical society in this country). IDSA was ordered by settlement agreement to revamp their guidelines and include other non-IDSA doctors. They did NOT, and the guidelines barely changed. So insurance companies, who have been linked to some of the IDSA panel members, in a corrupt fashion, cover 28 days of treatment, if that. And of course it's in their best interest to not pay for long-term treatment. There you go...there is WAY more involved, but that's my brief version.

I have MANY friends I have met in Lyme support groups who have been misdiagnosed with ALS/Lou Gehrig's disease, lupus, chronic fatigue syndrome/fibromyalgia, MS, etc. by MAJOR hospitals (Stanford, Duke, UCSF, Mayo Clinic) and then found an ILADS doctor, found out they were clinically and/or test-positive for Lyme, treated for years, and are now living fully active lives. One friend, "B," thought she was dying, was given an ALS diagnosis and after she found an ILADS doctor and discovered her Lyme (12 doctors later), she took 2 years of treatment, and is now swimming 6 days a week and almost fully functional.
She then goes to tell her primary care doctor at a major SF hospital what happened, she had Lyme, and she went into remission. The doctor still REFUSED to believe she had Lyme. WHY THE RESISTANCE???? If someone can tell me how much (NOT all) of mainstream medicine is so brainwashed, and cannot open their minds to the possibility of another idea, I would greatly appreciate it.

First, for any doctors or medical professionals or others who are disbelievers in the long-term nature and treatment of this disease called late-state Lyme, and who are aware of the incredibly politically controversial nature of the IDSA (Infectious Disease Society of America) guidelines and how they have oppressed hundreds of thousands of lives of Lyme patients, please read this great new article by Dr Stricker (my first Lyme doc and past president of ILADS, International Lyme and Associated Disease Society) and Lorraine Johnson, J.D.: The Infectious Diseases Society of America Lyme guidelines: a cautionary tale about the development of clinical practice guidelines.


Lyme is called the "great imitator" because it is very often misdiagnosed as ALS/"Lou Gehrig's" disease (a VERY serious progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord and eventually leads to death), Lupus, Chronic fatigue syndrome and fibromyalgia, schizophrenia, depression/anxiety disorder (yes, Lyme makes you crazier than a bat out of hell - once the bugs get in your brain and you have what is called "neuroborreliosis"), rheumatoid arthritis, the list goes on. Unfortunately, because of the IDSA, the CDC has not yet run proper clinical trials on the numerous treatments for late-stage Lyme and its co-infections. Most Lyme patients will take over 12-13 different drugs/treatments, for anywhere from 1-12 months each of these meds.

Most people - myself included, until 2 years ago - are not aware that Lyme Disease is one of the most (if not the most) controversial diseases in this country. When I was diagnosed with Lyme Disease, Babesia, Bartonella, and Ehrlicia (the 3 major Lyme co-infections that most doctors were not even aware were transmitted by ticks until about 10-15 years ago) in the summer of 2008, I had NO idea what an uphill battle I would face with the mainstream medical community and the Infectious Disease Society of America (IDSA, aka the organization that has ruined the lives of late-stage Lyme patients everywhere), and as a result, health insurance carriers, doctors, hospitals, pharmacists, and long term disability insurers. I was told to seek out an Infectious Disease (ID) Specialist, so I did (luckily being referred to one of the most highly respected ID Lyme doctors in California at the time, Dr Rafael Stricker, who has treated celebrity Amy Tan, the famous author of The JoyLuck Club/ Dr. Stricker was also past president of ILADS (International Lyme & Associated Disease Society), a nonprofit, international, multidisciplinary medical society, dedicated to the diagnosis and appropriate treatment of Lyme and its associated diseases. Amy Tan's extremely disturbing story (especially her neurological manifestations including hallucinations) with this disease is here.

20 Reasons Why Lyme is Undiagnosed:


My friends who have Lyme (who I have come to know VERY well through online Lyme blogs and my doctor's offices, one of whom I consider a very close friend and who I have never even met in person) all scream out in disgust, overwhelmed by the fact that it's like some sort of conspiracy - our medical system has conspired to keep this disease a dirty little secret, and why?? Well, I have some idea - it's called the IDSA (more on this corrupt medical society below).

The statistics are staggering:

FACTs about Lyme (note these facts are not known by the general population, but even more frightening, most general practitioners, including the 15 doctors and specialists I saw over the last 3 years):

Fewer than 50% of patients with Lyme disease recall a tick bite. In some studies this number is as low as 15% in culture-proven infection with the Lyme spirochete.

Fewer than 50% of patients with Lyme disease recall any rash. Although the erythema migrans (EM) or “bull’s-eye” rash is considered classic, it is not the most common dermatologic manifestation of early-localized Lyme infection. Atypical forms of this rash are seen far more commonly. It is important to know that the EM rash is pathognomonic of Lyme disease and requires no further verification prior to starting an appropriate course of antibiotic therapy.

The ELISA screening test (the most common Lyme blood test) is unreliable. The test misses 35% of culture-proven Lyme disease (only 65% sensitivity) and is unacceptable as the first step of a two-step screening protocol. By definition, a screening test should have at least 95% sensitivity.

Of patients with acute culture-proven Lyme disease, 20–30% remain seronegative on serial Western Blot sampling (test negative on a blood test). Antibody titers also appear to decline over time; thus while the Western Blot may remain positive for months, it may not always be sensitive enough to detect chronic infection with the Lyme spirochete.

There has never been a study demonstrating that 30 days of antibiotic treatment cures chronic Lyme disease. However there is a plethora of documentation in the US and European medical literature demonstrating by histology and culture techniques that short courses of antibiotic treatment fail to eradicate the Lyme spirochete. Short treatment courses have resulted in upwards of a 40% relapse rate, especially if treatment is delayed.(Remember, this 30 day treatment is what 90% of physicians in this country will treat you with if you present with Lyme Disease, and propagated by the corrupt few over at the Infectious Disease Society of America aka the IDSA).

Most cases of chronic Lyme disease require an extended (read YEARS) course of antibiotic therapy to achieve symptomatic relief. The return of symptoms and evidence of the continued presence of Borrelia burgdorferi (the scientific name for Lyme) indicates the need for further treatment. The very real consequences of untreated chronic persistent Lyme infection far outweigh the potential consequences of long-term antibiotic therapy. Complete disability is not something I am willing to accept, especially when people have gone into complete remission with long-term treatment!!

IRONY at the CDC and IDSA

The ironic thing about the controversy against Lyme-literate medical doctors (LLMDs) and long-term treatment is that the CDC (Center for Disease Control) and others (IDSA) don't want doctors overusing antibiotics (most of what is used to treat Lyme). Antibiotics create resistance in the long run, YES. And I agree overuse of antibiotics has become a problem. BUT, let me tell you something. I had some acne that wouldn't go away and my dermatologist put me on Doxycycline (one of the more basic drugs used for Lyme) for 2 YEARS straight. Did anyone at the CDC or any medical society put her on a watch list, discourage her from prescribing long-term abx for such a benign health condition, encourage alternatives, or put her medical license at risk? NO!

Many doctors hand out Z-packs (Zithromax), Cipro like candy, and other antibiotics for simple colds and flus (which are often viral not bacterial in nature, thereby not responding to antibiotic therapy). Pediatricians hand out long term antibiotics for child ear infections and yet we don't question the need for this, rightfully so. BUT when a person is chronically ill with late-stage Lyme and all its nasty destructive co-infections crippling our minds and bodies to the point of wheelchairs, seizures, and complete disability, which take YEARS to overcome, and a patient's life is at risk, not to mention their livelihood and ability to function and live any sort of life, their doctors (our ILADS doctors) are PERSECUTED by state medical boards for prescribing long-term antibiotics. !!!! Yes, Lyme can sometimes kill.


Lyme has killed one patient in her sleep b/c of heart complications (Lyme carditis) from the disease. Many times patients are at risk of death when they have Babesiosis, which I have, and which closely resembles malaria, also transmitted by the tick and categorized under Lyme Disease. This co-infection can cause death in elderly patients and those without spleens. Many suicides that occur as a result of the harrowing and disabling neuropsychiatric symptoms that plague the infected brain of late-stage Lyme patients with neuroborreliosis (when Lyme has gone into the brain, as it has with most late-stage patients like myself). You can read about the recent tragic death of my 28-year old friend Lindsay from Lyme on my blog.

Good medical doctors accept that medicine is an ever-changing science. It evolves, we learn new things EVERYday, so why can't millions of doctor accept that this disease - late-stage Lyme disease (aka chronic Lyme disease) (1) EXISTS and (2) is one of the most disabling illnesses on the face of the planet? There are research papers, AMPLE clinical evidence (but of course modern medicine keeps asserting if it's not documented, it doesn't exist), a new center devoted to late-stage Lyme and its neurological impact (the newly opened Lyme Center at Columbia University under famed psychiatrist, Dr. Brian Fallon), the new documentary "Under Our Skin" exposing this tragic controversy, and evolving science not to mention hundreds of thousands of PATIENTS who exhibit the same or similar set of symptoms and who generally improve with long-term antibiotic and other therapy, including oral and intravenous treatments.

EXCELLENT SOURCE FOR LYME POLICY NEWS and CONTROVERSY by Lorraine Johnson, J.D., M.B.A. (esp for doctors/medical professionals):


IT WAS THE 1970'S BEFORE Multiple sclerosis, a disease that strangely shares many if not most symptoms of late-stage Lyme, WAS EVEN RECOGNIZED. 1981 was when the first evidence (provided by MRI) that MS is a constantly active disease even when symptoms abate. YET, 1838 was the year MS was described scientifically and autopsies at that time from patients with what we NOW know was MS confirmed this. Is THIS what is happening with Lyme? In my (not so humble) opinion, YES.

Will it take over 100 years for the mainstream medical community to APPROVE what we sick, disabled patients already know is a crippling disease that destroys families, relationships, lives, and bankrupts families? The science is already there! For the record, the causative agent of Lyme disease was discovered in 1981 by William Burgdorfer, who HIMSELF agrees with the long-term nature of the disease AND the treatment, in his interview in the documentary, Under Our Skin.

An infection so deep-rooted, so mysterious, that one doctor at one Lyme conference told my friend, a fellow Lyme patient and doctor, that this disease is so complex "is straight out of a science fiction novel." That doctor said Lyme can flip into your fatty cell, evade blood detection, then turn inside out and come right back into your blood stream.

I don't know ONE late-stage Lyme patient who goes to a 'regular' infectious disease specialist (also known as an IDSA doctor) at a major hospital. For example, most of my doctors say, "why do you fly to Washington, DC every 4 weeks to see this doctor? Why do you fly to California to see a Lyme doctor? There are infectious doctors right here at..insert any major hospital." They don't understand that these infectious disease docs - under the regulations of the IDSA - follow the IDSA guidelines, which say 28 days of treatment will cure Lyme.

Sure, maybe if you just got bit a day or week ago. And even then, I know patients who had to treat for one year to get return to normal health. And those are the LUCKY ones who caught it early. If you're sick after 28 days of treatment (which all late-stage Lymies are), doctors call it post-Lyme fatigue and say you - the patient - just has to "deal with it." Then they call in the psychiatrists and say put this person on antidepressants. Yes, doctors' answer to everything. If they cannot figure it out, well the patient must be crazy! Put them on antidepressants, Xanax, anti-anxiety meds. This will calm them down for a while.

When I mysteriously lost about 30 lbs. from my already thin frame back in 2006 before I was diagnosed with Lyme, one doctor told me to 'stop focusing on my weight' and then I wouldn't lose it. WHAT!?!? Those of you who know me know I LIVE and LOVE to eat. I apologize to any doctors reading this; I may come across as well...un-loving towards doctors. But I have been through so many that have dismissed my reality (aka living hell) and refused to investigate the materials I gave to them, so I have good reason to be apprehensive towards them.

I don't think it is their fault entirely. Most get 1 hour in medical school saying "Lyme disease is rare, easily treated, and cured within a month." That's it. The system needs an overhaul. And it starts with the IDSA.


Here is an excellent story of a friend W (won't use her full name) I met in Michigan at Lyme Disease Support Group. We spoke and she told me she was bitten by a tick and within days was extremely ill. She had fevers, stiff neck, could barely get out of bed (the usual onset of Lyme symptoms though remember MANY patients don't get this early onset warning; I certainly did not, or was too busy to notice). She saw doctors for months - nobody could figure out what was wrong with her. She told them she was bitten by a tick but because her regular IgG/IgM blood test was negative, she didn't have Lyme, according to them (them being infectious disease doctors). ERROR #1.

Diagnosing Lyme is NOT dependent on positive test results and most tests miss ____% of diagnoses. Lyme disease hides often hides out in fatty cells of our tissues, thereby EVADING blood detection because the antibodies are not present in the blood. Sometimes a patient will be positive, and sometimes they will be negative. I was negative on my IgG/IgM (the very basic, unreliable) test at UCSF after being disabled for about 7 months. After my 12th doctor, I found a marvelous doctor at the University of Michigan - who was very integrative - sent my blood to Igenex Labs (one of the few labs in the country that ONLY test for Lyme disease and its co-infections, Bartonella, Babesia, Ehrlicia) and luckily I was BLARINGLY positive on all my tests. I knew I had it. But the proper diagnosis should be made on CLINICAL manifestations of the disease by a highly trained LLMD (Lyme literate medical doctor)/infectious disease specialist.

Ok back to W. She ended up in a wheelchair at the age of 35, went from a social, bubbly, athlete to a depressed disabled woman in a matter of months. Finally, her husband decided to take her to Mayo Clinic. They would find out what was wrong with her, right? The story gets more disturbing from here.

W saw a number of specialists at Mayo, getting the full workup. Even though she had a positive Lyme test at Mayo, W was told that she only needed a few weeks of antibiotics and would be fine. But the doctors at Mayo told her Michigan does not have Lyme Disease (you can check every state Department of Health website, and infected Ixodes deer ticks have been found in EVERY state in the union). (For the record, W was NOT fine after a few weeks of antibiotics; remember Mayo follows the IDSA guidelines too).

W saw a gynecologist at Mayo, who happened to be from Northern Michigan, the state where Wendy is from. The gynecologist, Dr. A, did the exam, found some issues, and said, "Ok, well you found your diagnosis, you should go home now" in a sort of 'scurry along and get home' fashion. W told me she and her husband were very confused by this woman; W had many more specialists to see at Mayo.

A few weeks later, W got back to Michigan, got a call from the gynecologist, Dr. A. Dr. A said, "W, I am one of the physicians from the Mayo Clinic and I am NOT calling you as a representative of the Mayo Clinic. I want to know how you are doing." W was perplexed and answered that she was still extremely disabled. Dr A said, "Get to a Lyme-literate doctor right away. You did not hear this from me, and again, I am NOT speaking as a Mayo Clinic Doctor right now. I watched all your symptoms, I watched your gait (her walk) from the wheelchair, you have all the classic signs of Lyme Disease. You need to see an LLMD, not any infectious disease doctor. I had late-stage Lyme in medical school, everyone thought I was crazy, I couldn't get out of bed for 7 months at that time. You need to find someone who will treat you properly and please don't mention this phone call to anyone."

THIS is a true story. W and I are still in touch. She now sees a Lyme literate medical doctor (LLMD) in Michigan treating her and seeing slow but steady improvements. I was flabbergasted and nauseated with disgust at the state of the medical system. Dr A also mentioned, "Mayo's system is not up to date. They don't even have Michigan down as a state having Lyme."

Phuli Cohan, M.D. is a friend and woman with late-stage Lyme and co-infections who I met through another dear friend with Lyme (met via the support forum). Below are Dr. Cohan's submitted comments to the IOM (Institute of Medicine) recent meeting on Lyme Disease. Phuli is an extremely intelligent woman, who happens to be a doctor with late-stage Lyme. She is in a unique position to present on her experience because she is a doctor. I think she will be a major force in changing the horrible suppression of this disease in this country. I hope to be right along side her on Capitol Hill one day:

I am a published author and physician currently practicing medicine in Eastern Massachusetts . My medical partner and I have treated many Lyme patients, both acute and chronic, over the past 15 years, Unfortunately, the number of Lyme patients has steadily grown as the incidence of Lyme disease has tripled in our region in the last 2 years. I have also had personal experience with acute and chronic Lyme, having grown up in Cape Cod.

Professional obligations prevented me from traveling to the meeting , but I followed it via webcam, offering questions via email. During a phone conference with your committee representative, I was informed that the committee was particularly interested in receiving input from treating physicians. I offer my recommendations below. Please consider these while drafting your report.

1. There is an urgent need for multidisciplinary centers, focused on the treatment, research and cognitive rehabilitation for patients suffering from chronic Lyme disease. Presently there are no centers that recognize and manage such patients effectively. This growing group of sufferers has been labeled "Post Lyme Disease Syndrome," implying that active infection is no longer problematic. Scientific evidence was presented to the committee demonstrating the existence of dormant and relapsing active chronic infection.

2. Chronic Lyme Disease must be redefined. It is a disease complex which results from numerous infections, and injury to brain, nerves, connective tissues, organs, bowel, genitourinary tract and more. This complex has devastating physical and psychosocial consequences. Acute Lyme disease and acute Rickettsial diseases were well represented in the meeting, but there was no substantial discussion about chronic Lyme.

3. Chronic Lyme patients suffer from infections of the brain (Limbic System in particular), as well as other organs including bone. Borreliia is a Treponemal bacteria capable of penetrating all tissues, much like Syphilis. This important fact is not recognized by most physicians and the public at large. Necropsy studies of patients who have died from Lyme disease, be it suicide of encephalopathy, demonstrate "chronic meningitis, the occlusive meningovascular and secondary parenchymal changes that we found are similar to those occurring in the meningovascular form of neurosyphilis." (Acta Neuropathol (Berl). 1990;80(5):568-72. PMID: 2251916)

4. Psychiatrists and psychologists must be educated, and included in further meetings. The leading cause of death from Lyme disease is suicide, yet this was not mentioned in any discussions. I practice in one of our nation's oldest and largest Lyme belts and am surrounded by major academic centers, yet there are no psychiatrists or psychologists that I am able to refer my patients to, experienced in the treatment of the psychological manifestations of chronic Lyme disease . Most psychiatric manifestations are due to brain involvement as well as the severe isolation and lack of community and medical support.

5. EEG, brain imaging studies, and pharmaceutical trials are needed. Psychiatric symptoms are frequently triggered by excess stimulation (light, noise and emotional stress). Anti-seizure medications such as Lamictal, Neurontin, and Ativan have proved most effective in our patients. Unlike classical depression, patients suffering with Lyme associated depression remain interested in their environment and loved ones. Unlike classically depressed patients,
Lyme patients miss their premorbid functional state, rather than shunning it. Antidepressants are often ineffective and often exacerbate preexisting insomnia, headache, and mood lability.

6. Cognitive decline, learning disabilities, memory loss, loss of balance, loss of motor strength, bone pain, dental pain, varied urinary and bowel symptoms, sensory disorders which include neuropathic pain syndromes (shooting nerve pains, vibratory sensations, headaches, noise and light intolerance), visual disturbance, insomnia, and mood disorders are the primary symptoms in our chronic Lyme patients. The only chronic Lyme symptoms discussed with any depth were fatigue and joint pain. Though important, these symptoms are not the primary concern to chronically infected patients. During the proceedings, the only clinician, a rheumatologist who specialized in chronic fatigue and joint pain, failed to mention these symptoms and the need for clinical trials. No clinical or research based neurologists were included in the panel.

7. Studies are needed to investigate hormonal deficiency and hormonal disruption common to chronic lyme sufferers. Many patients are deficient in the pituitary hormones ADH, TSH, and ACTH. They commonly suffer from premature menopause, and ovulatory dysfunction, particularly problematic in adolescent girls and young women as such deficiencies are known risk factors for bone loss, as well as physical and psychological symptoms.

8. Programs providing counseling for pregnancy concerns must be developed. Transplacental infection is well described in the literature (Gestational Lyme borreliosis. Implications for the fetus.
Rheum Dis Clin North Am 1989 Nov;15(4):657-77). This is a major public health concern as children born to actively infected mothers suffer a wide range of learning and developmental delays in addition to blindness, and fetal death. This important topic was not mentioned in the meeting. Clearly education of all obstetrician gynecologist and the public at large must be undertaken. Currently all expectant mothers are screened for Syphilis, no screening for Lyme disease is done, even in heavily endemic regions.

9. Clinical collaboration is needed with veterinarians as their research and literature offers the bulk of information of many co-infections, particularly Bartonella. As mentioned briefly in the meeting, Bartonella infects nerve, bone and bone marrow, dental tissue, and down regulates the immune system, perpetuating chronic infection.

10. Recognition and investigation of Tick borne bacteria and protozoal contamination of our nation's blood supply must be studied. A program to monitor blood banks must be developed to limit this serious threat to national health.

11. There is an urgent need for educational support and recognition of learning disabilities and psychosocial trauma in children and adolescents suffering from chronic Lyme disease. Schools, community social workers, and pediatricians must be informed of this growing problem. As shown on the CDC website, the most commonly infected age group for Lyme is the pediatric population. Only one pediatrician served on the panel, and his discussion was limited to diagnosis and treatment of acute Rocky Mountain Spotted Fever.

I would like to thank the committee for addressing this growing epidemic which has become a major public health concern. It was heartening to see opposing medical groups begin a meaningful dialog necessary to better understand the nature of this disabling and complicated disease complex, we call Lyme disease. It is vital that meetings continue and that funding be made available as soon as possible to address this growing national epidemic.

Sincerely yours,
Phuli Cohan, M.D.

*Note, Phuli is writing a book on Lyme, and her blog is at:

UNDER CONSTRUCTION here but still readable...-Mona

LEGAL ACTION AGAINST THE IDSA (Infectious Disease Society of America) by CT State Attorney General Blumenthal

INSERT info about Blumenthal suit against IDSA:

After careful review and investigation, the State Attorney General of Connecticut, Richard Blumenthal, at the urging of numerous Lyme patients in his state, launched an antitrust investigation against the Infectious Disease Society of America (IDSA) due to their treatment medical guidelines and conflicts of interest with insurance companies and others. The 2008 Press Release can be found here:

Blumenthal found: "This agreement vindicates my investigation -- finding undisclosed financial interests and forcing a reassessment of IDSA 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."

After reviewing 3,000 pages of peer-reviewed evidence challenging advice in its 2006 Lyme disease medical guidelines, eight Infectious Diseases Society of America (IDSA) panelists voted to keep the 45-page document “as is.” Dr. Robert Bransfield, the president of a group of community-based Lyme specialist physicians (ILADS) issued this statement in response: “It’s a sad day for the health care system and for everyone who suffers from the Lyme disease epidemic. The IDSA’s flawed positions means patients will continue to suffer with incorrect diagnosis and improper treatment.”

Rework para below (MM)

In May 2008, the IDSA agreed to re-evaluate its Lyme disease guidelines as part of a settlement agreement for an antitrust investigation by the Attorney General of Connecticut, Richard Blumenthal. UNDER OUR SKIN covered this investigation as it unfolded, and revealed some of the evidence alluded to in Blumenthal’s investigation, including the significant conflicts of interest among the original IDSA guidelines panelists, suppression of scientific evidence by panelists, and exclusion of panel members with opposing viewpoints.

The Connecticut Attorney General is currently reviewing the IDSA Lyme report to determine whether the IDSA has violated the Settlement Agreement. If you would like to submit your feedback on how the IDSA Lyme disease guidelines have affected you and/or your family, emails can be sent to:

‣ View the announcement by the Infectious Disease Society of America

For those of you disbelievers (doctors) who think this is some ridiculous disease we late-stage Lyme patients made up in our head, here are a few points and questions:
A FEW of the real stories of late-stage Lyme from across the country:

Do you think all of us, myself included, would subject ourselves to grueling treatment that is basically intensive chemotherapy for not months, but YEARS, if we didn't think this was the only hope of us getting better?

Do you think all of us, myself included, would spend our entire life savings and go into tens or hundreds of thousands of dollars of debt paying these doctors for appointments and treatment that is usually not covered by insurance(thanks IDSA)? Not to mention the tens of thousands of dollars in adjuct holistic treatment like acupuncture, psychotherapy, reiki, craniosacral healing, supplements, herbs, and special dietary needs that are necessary if you want to keep your organs and body after this whole process?

I was a civil rights attorney, a Board Member and non-profit of a large non-profit in San Francisco, a civil rights advocate, an aunt, a girlfriend, a daughter, an active and laughing and positive friend, a happy snowboarding, mountain biking, running, hiking, surfing, woman with passion for life and a burning fire to change the world. Do you think I ENJOY having my 69-year old mother NOW spoon feed me on days that I am so sick, and make every meal for me? Do you think I ENJOY living with my parents when I am 32? We drive each other NUTS.

I consider myself a very educated person, and I have educated myself on this disease more than humanly possible. I have read every medical journal article, website, pamphlet, research, interviewed 4 Lyme doctors, and spoken with thousands of patients on the ins and outs of this disease. Most doctors will never know all the work we do. I spend almost all of my free time calling doctors, faxing supplement and medication sheets, faxing lab results, comparing my lab results weekly, fighting for disability benefits, fighting with insurnace companies, looking for even small changes in my pancreatic and liver enzymes that even my doctors miss, requesting saliva testing for adrenal fatigue in case I suspect my biodentical hormone dosages need to be readjusted, reading up on the latest and greatest in treatment news (i.e. biofilm agents), finding particular foods and recipes to soothe my severely burning stomach, pancreas, liver, and gallbladder from the toxicity of all these drugs and the die-off (the release of cytokins - toxins - into the bloodstream from the 'killing' of the bugs).

Shame on you IDSA: "Gary Wormser, MD, lead author of the IDSA guidelines, attributes many chronic Lyme symptoms to “the aches and pains of daily living.” Are you kidding me? I, and almost every Lyme patient I know, consider Wormser and Shapiro (another lead author of the bogus IDSA guidelines) a disgrace to humanity.


From: Proof that chronic lyme disease exists
The evidence continues to mount that Chronic Lyme Disease (CLD) exists and must be addressed by the medical community if solutions are to be found. Four National Institutes of Health (NIH) trials validated the existence and severity of CLD. Despite the evidence, there are physicians who continue to deny the existence and severity of CLD, which can hinder efforts to find a solution. Recognizing CLD could facilitate efforts to avoid diagnostic delays of two years and durations of illness of 4.7 to 9 years described in the NIH trials. The risk to society of emerging antibiotic-resistant organisms should be weighed against the societal risks associated with failing to treat an emerging population saddled with CLD. The mixed long-term outcome in children could also be examined. Once we accept the evidence that CLD exists, the medical community should be able to find solutions. Medical professionals should be encouraged to examine whether: (1) innovative treatments for early LD might prevent CLD, (2) early diagnosis of CLD might result in better treatment outcomes, and (3) more effective treatment regimens can be developed for CLD patients who have had prolonged illness and an associated poor quality of life.