Many Doctors Reluctant To Speak Publicly About Lyme Disease

“Wow,” I commented to WBUR Morning Edition producer Kathleen McNerney after I overheard her frustrated acceptance of one more refusal from one more specialist she’d asked to speak on the air about Lyme disease. “I can’t think of another medical field where it’s this hard to find a doctor who’ll speak on the record.”

In the course of the reporting for WBUR’s week-long series on Lyme disease, it has been extremely difficult to find local mainstream doctors willing to speak publicly about it. Lyme disease is surely one of the more controversial issues in American medicine, but is the atmosphere around it really that daunting and toxic? Here, Kathleen shares her experience and the perspectives of specialists.

By Kathleen McNerney
Guest Contributor

It’s passionate. It’s personal.

Thousands of people in Massachusetts are diagnosed with Lyme each year.

According to Dr. Gary Wormser, an infectious disease doctor at Westchester Medical Center and professor at New York Medical College, a year or more after those patients receive the standard treatment for Lyme disease, about 10 to 15 percent complain of chronic fatigue, aches and pains, or cognitive impairment. (One study cited by the Centers for Disease Control and Prevention puts that figure at 10 to 20 percent.)

Those patients who suffer ongoing symptoms are central to a debate in the medical community.

“It’s important to realize that the central controversy surrounding Lyme disease is that individuals have quite different perspectives on what Lyme disease is and also what chronic Lyme disease is,” said Wormser.

Another doctor said it was a “lose-lose situation” to speak publicly and possibly jeopardize his research, because there is so much animosity out there.

The majority of doctors and researchers say Lyme disease is caused by a tick-borne infection called borrelia burgdorferi that is easily treated with a round of antibiotics. But a small group of doctors raise questions about the tests used to diagnose Lyme and say that the infection is persistent, wreaking havoc on people’s bodies.

The debate is intense. So intense, in fact, that very few doctors in the mainstream want to speak publicly about it.

For WBUR’s series Living with Lyme, we reached out to dozens of specialists in Massachusetts to try to get the mainstream perspective (getting the alternative perspective was fairly easy).

Several didn’t return repeated phone calls. One administrative assistant said, “If you don’t hear back, it means that he’s not interested.” Two doctors would only speak off the record. One said he didn’t want to have a formal interview because “If you say something wrong, people pounce.” For him, it was too volatile an environment to speak publicly: “My job is not to debate, but explain what I think” based on scientific evidence.

Another doctor said it was a “lose-lose situation” to speak publicly and possibly jeopardize his research because there is so much animosity out there from patients and doctors who believe that Lyme is a chronic condition — that the bacteria is still operating in a patient’s system long after the initial antibiotic treatment.

Wormser of New York Medical College explained the strong feelings from patient advocates and so-called “Lyme-literate” doctors this way:

“Fundamentally, we have a lot of patients in the general population who have non-specific and quality-of-life-impairing symptoms. It’s just a fact of life, and these patients are frustrated and I don’t blame them because the mainstream medical community often doesn’t have the answers they want. They can’t be given a specific diagnosis or a specific therapy and they’re suffering and don’t know where to turn. So you can imagine the appeal when they go to a doctor that says, finally, ‘I know what you have. The other 25 doctors that you’ve seen have missed the diagnosis completely. You actually have chronic Lyme and I sort of know what to do.’

“And here’s what they tell them: ‘I’m going to give you these antibiotics long term and if you feel better, great. If you feel worse, that’s also indicative that the antibiotics are working. … And if you have good days and bad days, well, chronic Lyme is hard to treat.’ So really any outcome that the patients experience therefore is consistent with the presumed diagnosis of chronic Lyme. So you can imagine the situation that patients are put in.

“Patients have illnesses, sometimes they have waxing and waning periods on their own. Sometimes the sense that somebody’s actually looking after them and seeing them on a regular basis is very comforting and actually helpful and may be therapeutic. But the data that antibiotics actually would have a logical role in post-Lyme symptoms aren’t there. And the data on the actual effects beneficially of treatment are ambiguous at best or negative in the studies that have been done.”

And that rancorous debate isn’t helping patients, Wormser said.

“It would be nice if there could be some common ground and agreement as to how to go forward and try to prove or disprove what people seem to be thinking,” he said. “But from the mainstream perspective, the data are very strong that there’s no role for long-term antibiotics and there’s no evidence of chronic persistence of borrelia burgdorferi in humans in North America. And we’ve looked quite hard to find evidence of this.”

‘I feel that doctors are torn’ — Dr. Daniel Cameron

And the other side of the aisle, so to speak, agrees on the need for common ground.

Dr. Daniel Cameron is the former president of the International Lyme and Associated Diseases Society, which holds that Lyme is a chronic condition. This is a position represented by a small group of doctors.

“I think a second look at the literature will say, ‘Listen, these people are sick, there’s plenty of evidence.’ We have to move beyond the soundbites on both the ILADS and IDSA [mainstream Infectious Diseases Society of America],” he said.

“I feel that doctors are torn between those two organizations, the IDSA and ILADS,” Cameron continued. “They’re also torn when their local infectious disease doctor might complain or the medical board is questioning their treatment, so doctors don’t look at the evidence like they should, they look to the right or the left.”

Cameron wants more studies about people suffering these kinds of symptoms and more open dialogue among doctors about Lyme disease.

And there may be some room for agreement. Some of the doctors on the IDSA side told me that it might be good to have a diagnostic test that seeks out the bacteria itself, rather than the body’s response to the bacteria. Wormser said there could be a benefit in a test that clearly shows an active infection.

And, he said, it is also important to figure out what is causing about 20 percent of the general population to suffer symptoms like chronic fatigue and pain, which can be misdiagnosed as Lyme disease by doctors who either don’t test or don’t use standardized testing.

“If we had the answer for those kinds of symptoms, even symptomatic treatment that would eradicate them with a high degree of reliability, we would do so much good for so many people,” Wormser said.

Please follow our community rules when engaging in comment discussion on this site.
  • greglavy

    I went to the county hospital for just an abcess, but it turned into a deep infection in my leg/hip area. My point I want to make is do not be afraid to second third and keep on getting answers that make you feel right, we loose this ability to intuit life the way it is, so really delicate. So I was in the hospital and a doc came in bragging he’d been up with no sleep for 52 hours….Now i was a drug addict and have been up for a week 10 days 2 day 5 days I know what sleep deprivation does (I know they take cat naps) and when I said hey! that’s probably not a good idea to advertise that. You can in no way stop yourself from becoming batty….I did it for years so I know what that feeling is like and to think you doctors practicing I mean operating on other unsuspecting victims, I mean patients who give you their trust, the most sacred trust of all their lives. So now a little Philippines nurse comes in and says after injecting a drug into my I.V.line :if this drug ( I forgot the name as this was 16 years ago but just remembering that it was strange that she mentioned that if this drug—– was injected into my i.V. it would kill me and then she kind of smerked…not in a mean way. O.K here’s the good part where I am still here and this doctor came into my room with a syringe heading straijght for my I.v line , now if he hadn’t bragged about being up for so long i wouldn’t have given a second chance to questioning the doc on what he was putting in my I.v. line…and can you guess he said the same name as that nurse just said…that if that same drug was entered into my I.V it would kill me. So I said to the doc wait that is the same drug she just mentioned would kill me if it was introduced and he hesitated and then said nah, it’s O.K. so I said to the nurse right there tell him what you told me…and as doctors have this god like stature in the workplace and in society we think they know it all. Well if that angel of a nurse had not randomly I might add, to mention a random drug,,,I still ask myself today how that all happened and why am I still here. It was very strange for her to say out of all the dangerous drugs. I am not sure why it was that drug the doctor was going to give me. and when I said no he said oh it
    lt’l be O.K……

  • John Dietz

    I think K. McNerney has guts for taking on a contentious issue

  • dori

    If lyme disease can paralize a large Dog, what do you think it does to us that dont get treated For years later. Someone step up to the Plate.
    This is a disease. And needs to be adressed so we can be treated with this life long illness

    • Persephone

      I think even a dog gets more compassion and better care

  • Matt McFaul

    it seems to me that everyone forgets about the biofilms produced by the bacteria. Everyone just needs to hit up hulu and watch Under Our Skin. If anyone has a name of a good LLD that is committed to long term antibiotic treatments then please message it to me…I will move to his location.

  • Kara Kristine

    I have been battling Lyme disease along with 3 glorious co-infections for over 10 years. I was infected when I was 15 years old and was started on antibiotics 6 weeks after I found the tick embedded in my back. I was only started on the wrong antibiotics when the infection was in full swing. (bulls eye rashes, fever, body aches, joint pain, and fatigue) I felt better after the initial antibiotics. 1 year later I was plagued w/ horrible fatigue, cognitive impairments, depression, anxiety, joint pain, and migraines. I finally found a doctor in Rhode island that agreed to treat me for Lyme disease, Bartonella, and Babesiosis. I tested grossly positive for all three infections and had a cd57 test of 12 (test to show body’s immune response to Lyme disease) this number is terrible! I was also ruled out for lupus,ms and depression. I was treated with different antibiotics for over 6 months. I did feel better after the treatment and put Lyme disease behind me.

    Five years later the same symptoms as previous began again. The doctor that treated me 5 years earlier was no longer treating Lyme patients! She was very aggressive in treating her Lyme patients and insurance companies would not cover costs. This seemed to be a trend with many mainstream doctors. I finally found a practitioner that follower ILADS guidlines. I had a MRI, that showed abnormal changes in my brain, had an abnormal spec scan, cd57 test of 17, and tested positive for rocky mountain spotted fever, Bartonella and Babesisosis. I saw a neurologist that said ” I do not get involved with Lyme Disease patients.” I was again ruled out for MS. I decided with the guidance of the ILADS practitioner to begin long-term iv antibiotics for CNS Lyme Disease. I had a PICC line placed and was also treated with oral antibiotics. I felt much worse before I felt better. I stopped iv antibiotics after 6months. I am still 1 year later, being treated with oral antibiotics. I am feeling my symptoms again. I am very frustrated and discouraged. I am a 26 year old, new wife, ICU nurse and I want my life back. I am so tired of being tired. i struggle to get through a full day. I want to have a family some day soon and am very concerned about my health ramifications on a baby. (Lyme can be passed to the fetus). My life, my husband, and my family’s life is on hold and revolves around how I am feeling. I have good weeks and bad weeks (More bad currently)

    I work with many mainstream Drs and they thought I was crazy for this treatment. Sometimes I think I am crazy too but what other option do I have. Drs that argue that chronic Lyme Disease does not exist need to live in my body and many others who suffer from this disease. More research needs to be done. More accurate testing for the active bacteria needs to be developed. As stated above, both the ILADS and IDSA need to find a middle ground, forget about their egos and collaborate with research for diagnostics and treatment. So many people are suffering and are seeking help! I worry every day that in there will be complications later in life from this. I am seeking other medical opinions. I live in Rhode Island. Does anyone have any recommendations on a “Lyme Literate” ID doc? I would appreciate any recommendations!

    • Newby

      Modern solutions to non modern conditions. This disease has probably been around a long time – but we have a convergence of other environmental conditions that do not allow our bodies to co host such parasites (viruses) any longer. Strengthen the immune system through a natural diet, herbal therapies and supplements and modern treatments will be helped and stick. That is my belief. We keep handing our bodies over to be healed, when we need to bring our power of healing back to our own intuition. Continue with medications (antibiotics, etc.) but start eliminating anything that can cause sensitivity (dairy, wheat), eat only organic, whey powder drinks, high grade proteins, no sugar or honey at all, and take supplements (all anti-oxidants and more), probiotics,as well as herbs (echnicea, ashwaganda, milk thistle, etc.). I think this will help. You cannot rely soley on medications to control this disease any longer.

  • Parent

    The problem is that Wormser is lying. There are no studies to support what he is saying, but for the studies he and the few other guideline writers have authored. There are tens of thousands of peer-reviewed articles to support the other side, however; that’s why people are enraged. Those not involved in the battle simply do not understand because they, themselves, have not seen nor read the evidence; they merely listen to the guideline writers, who have a monopoly on the institutional write-ups on the disease. It’s Hitler’s Big Lie technique. If I were not emotionally involved in the matter due to the illness of my son (who has been saved by long-term antibiotics), I would also dismiss the side that seemed complicated and full of conspiracy talk. Unfortunately, however, I do not have that luxury. When you actually read the studies, it becomes very clear that the guideline writers are not only wrong, they are very plainly lying. If you want to know the reasons why they are lying, go research it; you will not like what you see (google chronic lyme, Tuskegee, for example). And for the record, I am an ivy-league educated, pragmatic person, who usually finds conspiracy talk nauseating, but the evidence for what is happening is absolutely, sadly, overwhelming. 

    • Brian Burkett

      Look at what the Lyme Cabal at Yale wrote about Lyme, it’s chronic form, and Neuroborrelosis BEFORE they had the Lymerix “vaccine” in the pipeline. Problem was the blots were smudged from the OspA (Pam3Cys) used as the “agent”

  • shazdancer

    In 2006, Dr. Wormser co-authored guidelines saying that chronic Lyme was nothing more than “the aches and pains of daily living.” It said that many of these patients never had been proven to have had Lyme at all. (He reiterated those statements on camera for a documentary on Lyme released in 2008.) In 2008, he co-wrote an article deriding chronic Lyme and equating it with debunked diseases such as chronic Epstein Barr (perhaps forgetting that chronic fatigue was once also debunked, termed the “yuppie flu”). In 2009, he co-wrote a paper in which he stated that most chronic Lyme patients were women who probably had chronic fatigue, fibromyalgia, or depression. Last year, he tried to equate those who treat Lyme as if it persists with those who deny that HIV is real, i.e. quacks.

    One of his co-authors disagrees with the guidelines concerning treating Lyme in pregnancy. One of his colleagues recently developed a urine antigen test for Lyme, a test debunked in the 2006 guidelines. Well-respected research is now pointing toward Bartonella as being a tick-borne co-infection, something that is specifically denied in the 2006 guidelines. Dr. Wormser’s own research, published this year, points to the Babesia co-infection being more prevalent than was previously described. In his comments above, Dr. Wormser admits that patients have “quality-of-life impairing symptoms” (one of his colleagues likened chronic Lyme to congestive heart failure), which is a far cry from “the aches and pains of daily living.”

    Clearly, the science is far from complete and is updating regularly. Instead of insulting those of us who have suffered and do suffer with ongoing objective (not just subjective) symptoms, how about listening to us as the evidence base that we are?

  • lymelissa

    Dr. Wormser, 

    Please, if you truly believe that Lyme is easily treated once it is late stage and you so desperately must make such statements as in this article. Take the challenge, let an infected tick with Lyme Disease and some other unknown parasites feed on you for a day. Then wait just 3-4 months and treat it with 2 weeks on Doxycycline. 2 weeks is all I was given for my late stage infection…it didn’t even touch my fever. You would never do this, because YOU and the rest of you quacks at the IDSA who are profiting from this huge scandal KNOW that you will be sick a long time.

  • Southern Guest

    My (now) 9 year old son was unable to leave the house for 1-1/12 years.  He spent his ENTIRE 8th year of life indoors because of extreme light sensitivity and the associated excruciating pain caused by Lyme disease and related symptoms.  After a year of treatment he has started to see dramatic improvement in those symptoms.

    I suspect that Dr. Wormser has not personally experienced Lyme Disease, otherwise his views on Chronic Lyme would be dramatically different.  Long term antibitotic treaments coupled with a sensible holistic approach to healing gave my son his life back. 

    It is UNCONSCIONABLE what the IDSA is doing to those suffering the long term effects of this horrible and complicated disease and to the brilliant, compassionate doctors who take the time to educate themselves in diagnosis and treatment and risk their livelhoods because of the actions of the IDSA.

    The CDC, by their association with the IDSA on this issue, further complicates the problem by innacurate reporting of cases of Lyme in the southeast and through adopting IDSA guidelines that ignore proper diagnosis of Lyme Disease and the existence of and treatment for Chronic Lyme Disease.

    • Alexa Kocinski

      Southern Guest – I have a friend experiencing late-stage Lyme and not getting properly treated for it because her lab results don’t technically prove Lyme (although she has a majority of the symptoms). May I please ask which doctor saw and treated your son? We are desperate at this point!

      Please contact me, if you wouldn’t mind, at woodenslurpy at gmail dot com. I would appreciate this so much. Thank you!

  • Joan of Arc
  • Joan of Arc

    Watch parts 1,2,3, and 4. Thank you Jerry Leonard.

  • Lyme advocate

    It is sad that the controversy has dominated the discourse, instead of the focus being on treating Lyme. My partner found help and has detailed her experience by interviewing over 20 experts and 20 patients that have beaten Lyme. If you are tired of the politics of Lyme and just want to make some progress with your health and understanding, I highly recommend her website –

  • Guest

    I think the vehemence of the comments posted below has illustrated the point behind this article quite nicely, though the commenters fail to have appreciated it.

    • Manduhai

      Such arrogance!  The comment deals with the complex realities that patients face if they are not promptly diagnosed, if they have more than one infection and it takes years to find this out, and it they are in the small category of patients diagnosed early who don’t respond totally to short courses of antibiotics. Doctors have not provided adequate answers to these patients and the vehemence is born of years of suffering and lack of scientific answers.

  • Alexander

    The whole Lyme disease issue has been downplayed which is why we’re in the mess we’re in today.  Although inadequately treated Lyme patients have chronic symptoms, it was said that there is no such thing as Chronic Lyme and that they were fakes.  Physicians who treated them were taken to court and stripped of their licenses.  All this has distracted us from the main issue of how to stop this epidemic. On Monhegan Island Maine where there had been a Lyme epidemic, they eliminated all the deer and this resulted in no deer ticks and no Lyme disease.  We need this effort on a massive scale: a Manhattan Project. 

  • kt

    “Bacteria” is plural, not singular.

  • DorothyLeland

    If you are going to feature Dr. Gary Wormser so prominently in a blog, you should present him in proper context. He’s not just any infectious disease doctor and/or medical professor. He is the chief architect of the hotly contested IDSA Lyme treatment guidelines, the ones that insurance companies use to deny payment for Lyme treatment. The very ones that make it so difficult for Lyme patients to get properly diagnosed and treated in the first place.

    Dr. Wormser also has self-disclosed financial conflicts-of-interest with Lyme diagnostic tests (Immunetics, BioRad, Biopeptides, Diaspex, Abbott Laboratories) and Lyme vaccines (Baxter, AstraZaneca, Biopeptides).

    He also regularly testifies in medical malpractice cases regarding Lyme disease. So, if a doctor is taken to court for treating Lyme disease outside of the IDSA guidelines, Wormser may testify against him or her in court. With his testimony, such doctors may end up losing their licenses.

    HE’S probably a reason that none of the other doctors want to talk to you on the record about Lyme disease!

    I’m not saying you shouldn’t interview him. But it does a huge disservice to the public when you don’t put his highly self-serving comments in the proper context.

    Best regards,

    Dorothy Leland

    • Alexander Davis

      And of course one gets big bucks testifying as an expert witness in court.    

      • Think Again

        Expert witnesses are just that – experts. Experts in any field are paid for their time and their work, which sometimes includes offering their expert opinion in court cases. This is not a conflict of interest.  Dr. Wormser is not testifying in his own cases, other people are bringing these cases to court.  Clearly,  if the Lyme doctors are losing their licenses, they can not justify the necessity, safety or benefits of their treatments. 

        • lymelissa

          There is also nothing mentioned in this article of the studies which were done to warrant such a short course of antibiotics. The studies that were done did not treat patients long enough to get them feeling better. So if you’ve had a lyme a long time and the short course of antibiotics doesn’t work….there is no recommendation for you. No doctor will talk about this because they are afraid to voice their true opinions…they might lose their medical licenses.

          • Think Again

             Lyme doctors are not losing their licenses because they are “voicing their true opinions”.  No doctor will lose their license for merely voicing an opinion. They lose their license due to their own gross misconduct and patient neglect. Clearly, that encompasses a lot more than the controversy over the use of antibiotics.

            As far as the studies go, they are out there.  Do not expect a news article to give anyone a full education in the history, diagnosis and treatment of infectious diseases.

          • Alexander

            select group of physicians, whom CT Attorney General Richard Blumenthal found
            had financial conflicts of interest, were allowed to write up the legal Lyme
            treatment guidelines,
            then served to allow insurance companies to profit by denying coverage.  Some of these physicians were on the payroll
            of the insurance companies. They published studies referencing themselves, then
            they served as so-called expert witnesses against MDs who did not follow their
            arbitrary guidelines but who were healing patients. Something is rotten in the
            state of Denmark.     

          • Brian Burkett

            Hey Mr smarty pants Think Again. Why don’t you educate us with you knowledge of what OspA is (structure=function) Once you can give me THAT and explain why Linden Hu (Im sure you have heard of him) just received a grant to study WHY Ospa (which is a FUNGAL LIPPOPEPTIDE) is so similiar to HIV gp120 and Pam3Cys, the same superantigen that was tried for the HIV and Lyme vaccine. These fungi tollerize the mycoplasmas in the blood, reactivate latent Herpes infections (HHV6 and EBV, etc). C’mone edumacate me, cause I’m just a unintelligent sufferer and you seem to feel you know everything.

          • Brian Burkett

            and possibly, maybe those docs are treating Babesia WA1 and one of the 26 NOW KNOWN Bartonella species (see Dr ED Breitschwerdt at NCSU zooinologist ID doc) that infect the endothelial, epithelial cells AND Macrophages. Or how about some of the Mycoplasma co-infections of M. Genitalium, M. Fermentans or M. Pneumonea. C’mon…….I know ya wanna burst your veins saying they don’t exist……..

        • ourfoundingfather

          Bull. You work for him?

  • Alexander Davis

    As described on the Mayo Clinic website, in late syphilis, gummas (bumps) appear which are successfully treated with antibiotics.  Why then are MDs like Wormser so close-minded to the idea that spirochetes in another disease Lyme might not all disappear so fast after initial treatment?   Just as one might contract syphilis twice, people may be bitten multiple times by ticks.  Therefore one supposedly being treated initially may already have disseminated spirochetes from a previous unrecognized tick bite. This could explain in some cases why initial treatment is inadequate.   

  • Julia Rachel

    One of the major obstacles in Lyme awareness and treatment is A) getting diagnosed quickly and finding a Lyme Literate Doctor. Then, more obstacles ensue. There are a PLETHORA of pathogens that need to be tested for after a tick bite, especially if the tick has latched for 24+ hours. Babiosa testing must be done within 14 days after the tick is removed and needs 2 medicines for a year or more to treat. Go past that 14 day window and problems escalate.

     The preventative 10 days of doxycycline is warranted if the tick has been latched for the 24-26 hour period and the patient is immunocompromised. At this point, a chance for recovery is substantial if caught at early onset.

     However, preventative measure are NOT being afforded to the high risk groups. And when Lyme does progress to chronic Lyme (when the bite is not noticed and no rash appears to signal a problem) , only a few tick borne pathogens are being treated or even tested by docs.

     Chronic Lyme runs hand in hand with Mycoplasma bacteria as well as MANY other bacterias, which all need treatment in addittion to the burdorfi.

    Also, the immune system can be  lowered with the tick borne pathogen neurotoxin and often times HHV-6, EBV and CMV viruses sneak in to feed off the weakedned CNS and cause a brain disease and neuro symptoms in patients, like MS type symptoms.

     Protocol: A) use preventative measures when appropriate in high risk patients B) test for all know linked pathogens and treat them.

     In 2011 The State of MASS. declared a “public State of Emergency” due to  Lyme epidemic. The cost to the state has been hundereds of millions of dollars. Treatment COSTS could have been 1/100th of that and lives could have been bettered and saved. Its time to raise awareness, stop this hiding in the bushes from pathogens and viruses. Another fun fact which Docs are reticent to say out Lyme, Lyme can be contagious.

    Just Treat The Patients and stop this pandemic, it will only get worse.

     VLG on Valcyte Blog.
    Julia Hugo Rachel

  • William Wiegman

    The problem with treating Lyme and afterwards Chronic Lyme is that in some people who are treated a little late in the infection, their own immune system and then the introduction of antibiotics causes the Lyme Borellia bacteria to transform itself into two other forms it can normally take to hide from the patient’s immune system and the antibiotics.

    It is already proven that Borellia can convert to a cyst for and a clustered cell wall deficient form, both of which are not affected by a standard daily antibiotic regimen.

    The vaccine that was taken off the market because it caused ‘arthritic’ symptoms simply caused the Borrelia to bore into the soft white tissues of the joint cartilage to hide itself from the antibodies created by the vaccine to mark it for destruction by the white blood cells.

    It is Borellia’s ability to drill it’s way into every cell in the human body and live off them without killing them that causes all the different symptoms and why it mimics or perhaps even is the root cause of many chronic diseases that heretofore seemingly have undiscovered causes, like Alzheimer’s, Lupus, Parkinson’s, Type 2 diabetes and probably many more.

    • Sister7111

      Where did you get that information? This is the first time I have heard this. I have been treated for LyMe and feel the symptoms are returning.

      • MzProgressive

        William: Search “Lyme” + “memory loss” and you will find a wealth of information. 

        Lyme is OFTEN  misdiagnosed as MS, Parkinsons, ALS or Alzheimers, because 1) the standard ELISA test for Burgdorferi borrelia can give a false negative result in up to 60% of tests (for various reasons) and, 2) Lyme not only affects joints and muscles, but it attacks the Central Nervous System as well.  The neurologist  who finally diagnosed my loved one (after 15+ years) recommended a Spinal Tap, telling me that once one has a long-term infection the Lyme spirochete is not so likely to be found in blood tests, as it migrates to the cerebrospinal fluid, where “it gets everything it needs.”

        See, for example:

        People with neuro Lyme might first experience sudden onset “panic attacks” or what is described as “brain fog” – then symptoms of short-term memory loss follows, which only progresses.  Many opine that Borrelia is a close cousin of the bug that causes syphilis, and should be treated like a long-term syphilis infection – with many months of powerful antibiotics.  Some of the latest studies, contrary to Dr. Wormer’s assertions above, have proven that such treatment can be quite effective, even in cases of long-term neuro Lyme.  

        The earmarks of neurological Lyme can be seen as “white patches” on the brain, in a CAT or an MRI, signifying that the spirochete has destroyed the myelin sheath of brain cells, which is why they can’t function properly.

        Fortunately, this might be stopped or even reversed…if one is lucky enough to find a practitioner brave enough to buck the scientific bigots, like our friend Gary Wormser (sho is quoted above). 

        Dr. Wormser and Dr. Steere (who was liberally quoted in another of these WBUR Lyme articles) are both members of the Infectious Disease Society Committee that “sets” the treatment guidelines for Lyme disease.  Their “learned opinion” grants health insurers the license to refuse to pay for potentially effective treatment, after the IDSA “protocol” has failed. 

        Thus mainstream physicians who rely upon the IDSA guidelines are basically illiterate when it comes to Lyme. And this medical controversy hovers over Lyme victims, who not only suffer by the illness, but by the financial and legal ramifications surrounding their hope for a  cure!

        Therefore it is common for lyme literate doctors to “go underground” as the author of this article has found.  Unfortunately these politics only delays treatment for sick patients, who get more and more debilitated as they bounce between “specialists” who are clueless.

        Former CT Attorney General Richard Blumenthal investigated the IDSA treatment recommendation committee for potential violations of antitrust. He found that every member had some “conflict of interest” issue in opposition to the interests of “public health.”  Unfortunately the case was settled, for what amounts to a “slap on the hand,” which settled nothing for Lyme patients.

        Lyme is now an epidemic – and as personal and public losses mount, more are saying that a lack of due diligence on the part of the medical experts amounts to nothing less than professional negligence.

        When in comes to Lyme, some folks just can’t see the forest for the trees.

  • Steve Cabana

    Kathleen (and physicians seeking guidance, patients seeking answers),

    I suggest you try to speak with Dr. Horowitz who over the last 25 years has been the doctor of last resort for chronic lyme patients and has treated over 12,000 patients to date. Here is a speech he gave this May outlining his treatment model. This is the state of the art in Lyme disease treatment and most doctors are unaware of his discoveries. Here is the link to the speech given in May of 2012 at Skidmore College:

    Once you’ve clicked on the below link, ensure that you are on
    the thumbnail video entitled, “tick-borne Disease – Part 1 (Morning.”  Then,
    move the ticker (forward button to the video) to the 17:10 minute mark.  This is
    essentially where the introduction for Dr. Horowitz begins.


    • rose

      where is his clinic or office? I think he’s in Hudson Valley in NY. How can we find the phone number?