In 2006 the previous Lyme disease guidelines were issued; then in 2009, the IDSA did a review and concluded they were fine as is and made no changes, despite all the objections from patients and doctors.  In 2016, the guidelines were reviewed again by the IDSA and in 2019 a draft of new guidelines was issued.  They are essentially the same as in 2006.  The patients said to be involved this time are not identified, presumably because their credentials to represent the patient community were not good.  Patient representatives should be selected by the patient community not those who are preparing the guidelines.  And their names made public.  The doctors who have vast experience with later stage cases were totally excluded, in the most egregious failing.

Therefore, IDSA attempts to show that these new Lyme guidelines comply with standards for fairness and objectivity are window dressing only.  Does the IDSA think that no useful scientific information has been produced since 2006 that would require changes?  This is static science that learns nothing new.  But in fact, there have been new developments that were ignored. Your literature review included papers that go back as far as 1985 yet left out many important papers that were published since 1985.  This is even more anti-science to say that nothing useful has been learned in 35 years that alters our understanding!  What would you say about any scientific field where there has been no improvement in thirty-five years?  The bottom line is that you conducted an arbitrary and biased survey in 2006 and it is still arbitrary now, with papers chosen to support a predetermined result.

That Lyme disease can persist has been demonstrated in peer reviewed papers that were ignored by IDSA.  This would require different treatment than what works for many cases of acute disease and shows that chronic Lyme has a microbiological explanation.  Added to that is the evidence of a great number of patients who are still sick from the same symptoms.  To refuse to recognize this and insist that no further treatment for an infectious disease is necessary is truly malpractice on a national scale.  It dooms patients and interferes with practitioners who help them.  Better treatments are surely needed for these patients, and there are hundreds of thousands of them now.  This will only increase in the future, adding to the public health burden.

Medical guidelines that exclude those who are forced to use them are bad medicine. A medical society that ignores the most experienced practitioners has failed. A literature survey that is cherry picked to demonstrate no changes are necessary in old guidelines is dishonest.  A 25-year-old testing procedure that is required to get treatment but misses many cases ensures sick people will get no treatment.  The 2019 draft of the Lyme disease guideline by IDSA is a travesty and a public health disaster.  It is unscientific.

I wish the new guidelines addressed the chronic disease taking into account up-to-date scientific literature on Lyme. Please. A lots of people and kids health are at stake. And relate to recent up date, I disagree with these restrictive guidelines that offer no perspective for chronic Lyme patients.

Thank you,
Catherine Breton

My name is Marie de Prémonville, I’m French and aged 46.

Having been bitten multiple times by ticks as a teenager, I developed Lyme disease as a young adult. It took me 20 years to get to a correct diagnosis (I had been wrongly diagnosed with spondylarthritis and given cortisone for years, with no improvement at all, and my health had kept deteriorating).

My daughter, now aged 8, was bitten 5 years ago and got seriously ill 3 months after (she had received a 2-week antibiotic treatment that obviously wasn’t enough). We have been struggling together for 5 years, after almost 20 years of suffering on my part, after having seen my little child in unbearable distress and pain…

Fortunately for us, after 18 months of medical wandering, a naturopath helped us meet an immunologist who believed in chronic Lyme (thank God our Elisa and Western Blot were both positive, we were so lucky). He treated us for 3 years, regardless of the risks he was personally taking as to medical authorities and helped us out of the worst of our symptoms.

Life is still very complicated for us, but hadn’t he been there, hadn’t he agreed to help us in opposition with official guidelines, neither my daughter nor I would be in a state to write this message today. The epidemic keeps spreading, people are getting seriously ill every day, families are destroyed… And denial persists!

How can you look at yourself in the mirror, leaving millions of people in pain and despair? The new guidelines on the chronic disease MUST take into account up-to-date scientific literature on Lyme and take the full measure of the sanitary scandal threatening people worldwide! Don’t let us die in silence and indifference!

I would like to point out that the Klempner trial is ancient history now, was said at the time to be the first of several trials (after patient advocates pointed out its flaws), but no further trials were scheduled. Klempner’s subjects were people who had already had extended treatment, comparable to what they were given in the trial, so this was not new information gathered, but a repeat. A persistent infection will not be cured by his regimen. Yet this trial is cited as part of your evidence for leaving lyme patients untreated after they are not cured by a short term therapy designed for acute cases, not chronic ones.

The way you know whether a treatment is working is to see what happens to the symptoms. If after the treatment, these symptoms decline but then are renewed, they are still infected. Further treatment that does the same thing, after short or longer periods of time, is evidence that treatment does work on some of the bacteria, but not the persisters. This is why the symptoms recur. It is not hard to understand then that treatment is still needed to maintain some functionality, until a more effective one that works against persisters is found. To do otherwise, is a scientific and public health injustice. There are many health problems where cure is not an option, but no one then throws these people on the trashpile.

Furthermore, at the time the Klempner trial occurred, there was less recognition of the role of coinfections, and the testing for those was and still is not thorough. How that affected his results is unknown but cannot help but be involved.

In the introductory section, it is stated that the guidelines are voluntary, but the IDSA has done everything in their power, and joined with the CDC to ensure that anyone who does not march in lockstep, or goosestep, will find themselves in trouble and frequently without a medical license anymore. In fact, one of the guideline authors has testified against doctors that have found the guidelines to be wrong in many ways, and used their professional judgement for better treatment of seriously ill patients. The fact that their treatments result in improvements is never taken into consideration! Dr. Wormser, though, is said not to have conflicts of interest!

If the IDSA is so far from truth in its lyme guidelines, why should we have any confidence that the other guidelines are not also seriously flawed and dishonest? Do you not realize what this is doing to public confidence in medicine? Or maybe you think holding all the cards, you do not have to care and are above the law. I think the people responsible for this should have found other fields of endeavor where their lack of competence would not do so much damage to so many people. If thousands of patients and their families say you are wrong, you should find out where and consult those with the actual evidence: the doctors and patients who have a vast amount of experience and are now shut out.

I have had Chronic Lyme for 20 years and I have a lot of experience with the CDC and the IDSA Guidelines. Dartmouth Hitchcock Medical Center tested me with an Elisa Test even though I live in the number two State for Lyme Disease, Vermont.

All my Elisa Tests were negative because nobody tested me for Epstein Barr Virus which Lyme Disease had Re-activated. For Ten years the Doctors denied every red flag for Lyme Disease that I demonstrated and said my illness was in my head because of one stupid test that was a FALSE POSITIVE BECAUSE OF EBV..

It is a WELL KNOWN FACT that Mono (stage two of Epstein Barr Virus)aka Epstein Barr Virus produces false negatives. MY Doctor who later fired me from my family practice I had been with for 35 years.

I found a Doctor in Mass who tested and treated me for EBV and many other pathogens like Mycoplasma Pneumoniae Chlamydia Pneumoniae and six other pathogens common to Lyme Disease.

I was denied a test for Epstein Barr Virus by the Same Hospital and Doctors (CDC & IDSA). If they had ONLY TESTED me for EBV they would have figured out that I was very very ill. If they had tested me for EBV they would have found that I had a very heavy viral load. After 15 years of being chronically ill I was finally able to knock down the EBV with meds and supplements and I finally tested positive for Lyme and Babesia after contracting it in 1999.

Because of the CDC and the the Junk Science that the IDSA Guidelines were based on, I was treated by Doctors who forced themselves to ignore all of my medical issues day after day. Month after Month. Blood Tests. Anemia. All they did was try to prove that I didn’t have Lyme Disease when I was severely ill and almost completely incapacitated. They refused to test me for EBV, they refused to connect the dots of all my different ailments.

I did not KNOW that I was a VICTIM of the BOGUS TWO TIERED Lyme Tests until I left Vermont and I was tested by a highly Qualified Doctor in the endemic state of Massachusetts in 2014.

People who Live in a high EPIDEMIC States should go Straight to the Western Blot, especially if they have all of the Symptoms that I had. As soon as The DHMC people saw my Negative Elisa Test I was dead to them.

Then the NH Doctors watched as I deteriorated for 14 straight years until I got my True Positive Western BLot Test which they don’t recognize because of The CDC and the IDSA Flawed Two-Tiered Lyme Test that Misses 80% of of the American Population.

They denied my Positive Lyme Test from the Best Lab Test in America. I was treated with Psych-Meds by Doctors who emphatically denied my Lyme Disease for twenty Years in-spite of Two Positive Lyme Test. Of course I needed the Pysch-Meds because I was so sick.

My Suggestions for the HUMANE treatment of Lyme Disease and it’s many many Coinfections is to Listen-Listen-Listen to all of us and stop treating us like Lab Rats. People with tick bites in States like Vermont (Number 2 for Lyme Disease) and Maine (Who is Number 1) do not need the STUPID ELISA TEST, we should all be given the Western Blot. Vermonters have big challenge that their Doctors are not ready to tackle and we all need help. The IDSA Doctors are famous for Denying Lyme Disease so that the Lyme victims can never get IV treatment like I needed after 15 years of a raging Lyme Infection. STOP DENYING LYME DISEASE-STOP DENYING THAT LYME IS A AMERICAN MADE BIO-WEAPON THAT WAS UNLEASHED ON US AND DENIED BY THE CDC AND THE I.D.S.A.SINCE THE EARLY SEVENTIES. ERIC TRAUB WAS A RUSSIAN DOUBLE AGENT WHO BRED TICKS WITH MANY PATHOGENS ON PLUM ISLAND FROM 194? TO THE SEVENTIES.

The IDSA has made review difficult by only offering the draft online in protected format. It cannot be searched by keyword nor can it be printed. Requests for a pdf that can be annotated were met with refusal. If you really want feedback, why did you make the process so difficult?

The IDSA has admitted in its own publication that the two-tiered testing method needs improvement. There is an abundance of research that supports the concept of seronegativity and research shows the two-tiered test to be about 50% accurate and not just in the first few days to weeks following infection. The IDSA fails to acknowledge that but many others do to the point at which laws have been passed in several states requiring physicians to notify patients that a negative test does not mean that they do not have Lyme disease. The diagnosis of Lyme disease should be a CLINICAL one until a better test is developed yet the IDSA does nothing to educate physicians in this regard and offers nothing to the unlucky patients who test falsely negative and go on to develop debilitating symptoms.

Research shows that an EM rash is present in about 50% of cases. Requiring patients in endemic areas to present with an EM rash in order to be tested/treated will result in missing many cases. The ability to define certain areas as “endemic” is limited due to the fact that funding for surveillance has been cut and due to the fact that reported cases lags way behind insurance claims.

Members of the committee that established these guidelines have financial conflicts of interest as noted by Senator Blumenthal in 2008 and as alleged in the ongoing lawsuit Torrey vs. IDSA. Committees charged with the task of establishing medical guidelines should be free of all conflicts of interest. Allowing these conflicts of interest to continue cannot be justified.

Many of the guidelines in this document are based on low levels of evidence and, in some cases, opinion only. There is no research, for example, to support the contention that the tick must remain attached for 36 hours in order to transmit disease. The minimum attachment time has never been established. Some models have shown that 5-7% of the nymph form of ticks transmitted Lyme in less than 24 hours, with one study finding it occurred in as little as 6 hours.

There is no research to support the 3 week treatment recommendation. In fact, there is research that shows that this recommendation fails in about 50% of cases.

Objective manifestations of Lyme disease (such as EM) are often absent. It is inappropriate and incorrect to ignore subjective symptoms when conducting research. It is not done elsewhere in medicine and should not be done in the case of Lyme disease.

There is much evidence to support persistent infection as at least one of the reasons why patients continue to experience symptoms following treatment. The IDSA needs to discontinue the harmful practice of ignoring valid scientific evidence that does not support the opinion that persistent infection does not exist. The IDSA also needs to discontinue the harmful practice of interpreting research findings with confirmation and anchor bias. The only way to achieve better outcomes is remain dedicated to truth and science.

Offering patients with persistent symptoms immunosuppressive drugs in the setting of possible persistent infection violates the promise to first do no harm.

It does not make sense to recommend against tick testing. Even if there is a low risk of transmission from a single tick bite, it is useful for the patient and physician should the patient develop symptoms later. It can also save a money should the patient require diagnostic testing.

There is no evidence to show that a single dose of doxycycline is effective it terms of eradicating Lyme disease. There is considerable evidence to show that it is not sufficient. This recommendation provides patients with a false sense of security and runs the risk of contributing to antibiotic resistant strains of Bb.

Living on lyme time for over 50 years, I am disabled and now gross 757.00 a month from disability. My every moment is consumed with dealing with symptoms. Innumerable doctors insult/ed, abuse and continue to misdiagnosis me. I don’t trust any of them anymore.

I would be happy to be dead … tried that 4 times during untreated psychosis but I was so physically fit prior, well a doc explained it’s hard to kill a body … apparently even one riddled with lyme and friends.

Hurry up. Our country is wallowing in the sewage of political inertia. I wish I were dying but I am consigned to live on lyme time thanks to this syphilis like despicable weapon of war.

We need a cure.

Respectfully yours

Trisha Rose