Lyme Disease: IDSA, ILADS and my conclusions (Part 9)

As everyone knows, I have spent the last few months putting together posts on Lyme disease. It took me a lot longer to get through than any other topic I can think of. The reason for this is politics. Lyme, and especially chronic Lyme, and especially chronic Lyme in the absence of a known tick bite or EM rash, is very controversial. It makes it really difficult for patients to know what information can be trusted.

The Infectious Diseases Society of America is an organization that represents health care providers and scientists working in the ID field. My research has been presented at IDSA conferences. IDSA publishes position papers and makes recommendations about treatment standards for various infectious diseases.

The International Lyme and Associated Diseases Society (ILADS) was formed to advocate for the existence of chronic Lyme disease. I couldn’t find an exact date, but they were around by the early 2000’s. In particular, they believe that the IDSA guidelines for diagnosis and treatment for Lyme disease are incorrect. They publish, lobby, and host conferences to educate providers and patients on their views of Lyme disease and coinfections. They believe that the IDSA guidelines prevent access to care.

These views lead to the Connecticut Attorney General suing the IDSA under anti-trust law in 2006. I read through a lot of the literature generated by the IDSA antitrust investigation. The legal action was filed based upon the fact that the IDSA was considered a dominant organization that restricted “consumer choice” and excluded ILADS researchers from their decision making processes.

I’m not going to lie: the fact that a state sued the IDSA for making guidelines based on evidence really leaves a bad taste in my mouth. Because in reviewing the ILADS papers and data, they don’t rely on evidence. They rely on the holes in the presented evidence. (Which are real, in fairness. As I stated before, Lyme diagnostics are not good.)

Here’s an example of what I mean. Let’s say there is a sheet of red paper with a hole cut out of it.

IDSA is saying the sheet is red.

ILADS is saying the hole is blue. They’re not saying that they have proof that it’s not red, it’s blue. They’re saying that there’s a hole in the red paper, could it have been blue before they cut it out? And they say they can tell it was blue because they used a special test in special labs that basically say that if the paper has any color, the result is reported as blue. The options are blue or negative. And even if the lab says it’s not blue, the doctors assume it was blue anyway.

My first experience with ILADS was when I went to the 2011 IDSA conference in Boston. It was at the convention center in South Boston. As I walked along the length of the building to get to the main entrance, I saw a person in a tick costume standing in my path. Tick costumed person had signs with the name “ILADS” emblazoned on them. Tick costumed person was being corralled by security (I assume for blocking the general path of traffic, which they were). It was pretty unforgettable.

I noticed a theme pretty early on in my Lyme research – that ILADS researchers and IDSA researchers would often say the same thing, but with different turns of phrase that lent themselves to misinterpretation. Sneaky. I hate that. There were several papers that I just stopped reading because of the cattiness of the language. It is very obvious that these organizations resent each other, and some researchers make no attempt to hide that. Which is unfortunate, because I’m betting a lot of scientists stop reading because of it.

Anyway, here’s an example:

In August 2013, the CDC released a statement that approximately 300,000 Americans are diagnosed with Lyme disease each year.

But if you go on the ILADS website, that’s not what they say the CDC said. Here’s what they say:

“CDC Reports: Lyme disease infects 300,000 people a year.”

See what happened here? Because they’re similar, but not the same. A few years ago, the CDC began a large, three pronged study to better characterize the nature of Lyme disease in the US. Part of that was identifying how many people were told they have Lyme disease. Another part was figuring out how many of those patients met the diagnostic criteria for Lyme as laid out by the CDC. 300,000 people were told they had Lyme disease. 300,000 people did NOT meet the diagnostic criteria for Lyme as laid out by the CDC. This is really important.

Diagnoses are defined by diagnostic criteria. If you don’t meet the criteria, you’re not counted as being affected for statistical purposes. The CDC is NOT saying that there are 300,000 people annually who meet the diagnostic criteria for Lyme. They are not. Whether or not the CDC criteria is effective for identifying all the people who have Lyme disease is a different issue. (I don’t think it is, if you’re wondering.)

Let’s take another example:

Let’s say there is a disease called Orange Disease. When people swallow orange seeds, oranges grow out of their noses. You can only get this disease from eating orange seeds. It is known to affect 50 people a year.

Now let’s say a group of doctors say that if you eat lemon seeds, lemons will grow out of your nose. They see some patients with this problem. They give them a treatment similar to the one for Orange Disease. These doctors say this problem with lemon seeds is Orange Disease, even though you can only get Orange Disease from eating orange seeds and lemon seeds are not orange seeds. But these doctors say because both oranges and lemons are citrus and the treatments are similar, everyone with these issues has Orange Disease. The rest of the doctors will only diagnose you with Orange Disease if you ate orange seeds.

That is what is happening here.

I believe that something is making 300,000 people a year sick. I do. I think that for those who have been bitten by a tick, it is possible that infection can cause long term changes in your body that cause symptoms. I think that the controlled studies have not shown long term antibiotics to be effective in treating this. I also think too many people say long term antibiotics do help to just write it off. I think the antibiotics do something, in some people.

Having worked in infectious diseases for years, it is hard for me to feel like moving a condition from underwhelming diagnostic criteria to a diagnosis of exclusion is a good idea. Diagnoses of exclusion are just so fraught with danger. Because maybe some of these people who don’t remember a tick bite and have these major constitutional symptoms really do have Lyme disease, but maybe they don’t. I feel certain that part of why it took me so long to get diagnosed with mast cell disease was because I was receiving treatment that really confused the issue. And I worry that this is the case for a lot of people.

It is my finding that Lyme diagnostics are not good.

It is my finding that it is possible to have Lyme disease, both acute and long term, and test negative.

It is my finding that Lyme specialty labs use tests that are not FDA validated, that are not considered reliable by many people.

It is my finding that it is possible for viable Borrelia to persist in the body after treatment.

It is my finding that it is not clear if those Borrelia cause an ongoing infection, or if the previous infection causes a permanent immunologic change that manifests as symptoms.

It is my finding that coinfections are possible. The majority of these organisms are treated with the first line treatment for Lyme disease. However, some are not.

It is my finding that long term antibiotic treatment has not been shown scientifically to help with chronic Lyme symptoms.

It is my finding that long term antibiotic treatment could facilitate benefits in some through anti-inflammatory or immune modulating properties, rather than through treatment of ongoing infection.

It is my finding that long term antibiotic treatment can have serious, irrevocable consequences.

It is my finding that 300,000 people being diagnosed annually with Lyme disease is not the same as 300,000 people being infected annually with Lyme disease.

It is my finding that tweaking the language to change the meaning of a previous finding is rampant in Lyme scientific literature.

It is my finding that unless you run down every citation, there is no way to know the truth.

It is my finding that some of the 300,000 people diagnosed annually with Lyme disease probably do really have symptoms from either a current or previous Borrelia infection, even if they have negative tests. But I would venture that a lot of them don’t.

12 Responses

  1. LymeMom February 26, 2015 / 1:41 pm

    Thank you for a concise, well-thought out treatise on Lyme disease! You are a light in this crazy Lyme darkness. My daughter’s diagnosis of “Chronic Lyme” has been a roadblock to her wellness.

    She was diagnosed with Lyme at age 14 by her pediatrician. This was with a positive test within a few weeks of a tick bite with rash in early summer. She felt better with the initial treatment of ABX, but while away at school that fall she started to experience debilitating symptoms that were attributed to a “Chronic Lyme” infection. No further Lyme testing was done, only blood tests for CD57 levels and standard CBC w/ differential.

    Many times during her treatment she was leukopenic. Her OH/POTS became unbearable. Syncope became so bad that she would literally pass out several times a week. Migraines almost everyday and extreme fatigue. All these symptoms were attributed to neurologic Lyme. The horrible purple striae on her body and the vomiting and diarrhea were attributed to a Bartonella co-infection. Her intolerance to warm/hot water (induced urticaria/hives and pain) and night sweats were attributed to a Babesia co-infection and fibromyalgia.

    There was only a marginal improvement of some symptoms with the standard ILADS protocols for my daughter. And, there were too many off-label drugs thrown in the mix that were supposed to make her well. The expense was outrageous, but we were willing to bear the cost so that she would regain her life. Payments of $150/month to the doctor to be part of his “club”, so she could be his patient. Office visits of $175+, most of which was not covered by our insurance. She was in treatment for over 2+ years and only got sicker and sicker. When it was suggested that the only way she could find improvement was through hyperbaric oxygen chamber treatments, $3500 for four sessions not covered by insurance, she said enough!

    I have always been suspect of the diagnosis and treatment, but we trusted our outstanding Lyme literate internal medicine doctor. Now we are on a journey to find out what keeps her bed-ridden at age 21, because it sure isn’t Lyme, Bartonella, and Babesia.

  2. Sarah bellany July 25, 2015 / 6:42 pm

    Great write, I too wonder about how many mast cell/lymies are out there.

    This was my experience:

    http://kiwikhttp://kiwikchat.blogspot.com.au/2013/12/two-more-diagnosis-lyme-and-mast-cell.html?m=1chat.blogspot.com.au/2013/12/two-more-diagnosis-lyme-and-mast-cell.html?m=1

    I hope you don’t mind the link.

    I also worry about mast cell treatment – what if the masties are overactive for a reason and we need them?

    What if antihistamines, make us more sensitive to histamine?

    there is so much to be discovered in immune type dsyfunctions!

    • Lisa Klimas July 25, 2015 / 9:36 pm

      One of the benefits of using antihistamines is the fact that they have been very, very well studied. First generation H1 blockers were out in the 60’s and second generation H1 blockers in the 80’s. Some of these studies looked at whether or not antihistamine treatment made patients more sensitive to histamine without treatment. They found that antihistamine treatment did not make patients more sensitive to histamine. I believe the population studied was exercise induced asthmatics and will see if I can find a reference (although this study was pretty old, I think.)

      Yes, we have still so much to learn.

      Regardless of the reason, if your mast cells are overactive to the point of endangering life, it requires treatment. I have yet to identify a true benefit to mast cell over activation.

  3. Rivers March 11, 2016 / 2:06 am

    I am still suffering from RMSF (or whatever it may be), and depending on who you ask, also Lyme. But the evidence of both sides is conflicting so I choose to not worry about it. Most of the Lyme community would swear my results are positive, but most of them also are just parroting politics and doctors like gospel. I honestly don’t care one way or the other.

    I know these people like myself are definitely sick, but I honestly hope I don’t have Lyme and only had RMSF just because the vast majority of the Lyme community is utterly unbearable. It’s no wonder most of my medical doctors assumed I was just crazy. It’s not just that but I don’t trust these organizations like ILADS. If I weren’t sick I would look at it and say “That’s a scam.” 100% of the time, but I understand how they are able to prey upon sick people. Most of the people who have gone to them seem to be in worse shape than me and than they started and out tens of thousands of dollars assuming they had that much to spend to start with. I didn’t even do anything special or specific to the diseases to find 90%+ relief, I just boosted my immune and digestive systems on a basic traditional Chinese medicine tonic program. All but one of the formulas has been used for centuries. I’m sure I could have done plenty of other affordable things and had similar results.

    Please don’t discount the reality and difficulty of how sick we are because of all the corrupted organizations and the behavior of individuals, etc, who admittedly give you every reason to write us off. When I was first diagnosed with RMSF and put on antibiotics I assured everyone I’d be back to myself in no time. That was 13 months ago. I laughed off the idea that this would be difficult compared to the things I’d been through before this when people worried for me. But I couldn’t have been more wrong, this is still by far the biggest challenge of my life. I’m 90% better which is only about the same level as when I was 60-70% recovered from back to back traumatic brain injuries that took me a total of 18 months recovery. For a long time the best I can equate the symptoms to was the 36 hours I spent on peyote in college, except for months not hours straight. I don’t know how I didn’t start to go crazy from it.

    My main motivation for recovery is so I can be an advocate for those of us stuck in the middle, give people hope, and stop sick people from being preyed on by these Lyme “physicians”. I’m sure there are some good ones, but most are downright dangerous and I would speak up more against them to other patients except it would get me kicked out because for some reason thinking for yourself isn’t allowed. I feel like most Lyme patients are part of these little cults and most don’t even realize they’re being mqnipulated. Knowing firsthand just how much they are suffering just makes me even more angry at these “doctors.”

    Why can’t we find some sort of middle ground? Or at least can the IDSA stand up for people like me instead of ignoring us. I want real help, not what the “Lymies” are offering me. And you all know I’m sick but don’t have anything to offer me, so what am I supposed to do other than wait and hope that one day you can help me?

    • Lisa Klimas March 11, 2016 / 2:19 am

      I am in no way discounting the fact that people with ambiguous diagnoses are still very sick. I don’t know if you have read the rest of my blog, but I don’t have Lyme or any other tickborne disease. I have a rare blood disorder and write about it for patients and doctors. I wrote this series because I’m an ID microbiologist by training and several people asked if I would. I don’t have a dog in this fight. Hope things look up soon.

      • Rivers April 25, 2016 / 10:03 pm

        It is people like you who do not have a dog in this fight who have usually taught me the most about many aspects of this, or given me the next piece of the puzzle when I got stuck! Thank you for putting this together, I had found it very beneficial to read (why I bothered commenting), and wish more people with Lyme and/or its co-infections would read articles like yours. I found this when I was looking for articles that explained my feelings on ILADS, etc. Glad I saw this, because I did not realize how far I’ve come in the short time since writing this. Sorry for directing my general frustrations towards you. This really was one of the best write-ups on the subject I’ve read so I don’t know why I did.

        Again, thank you. I wish I knew more about your condition, but I wish you the best of luck in continuing to spread information about it for others, especially being rare.

        • Lisa Klimas April 26, 2016 / 9:15 am

          No worries, being sick is hard. I appreciate the kind words. 🙂

  4. Jennifer April 22, 2016 / 6:01 pm

    My eight year old son’s doctor is treating his Lyme disease as an auto-immune disease, using nothing but the Lyme LDI (low dose immunotherapy). He is not taking any antibiotics. He is getting better. His Bell’s palsy has resolved. He is much more active. His hypotonia is 75% better.

    When people have an auto-immune disease that has resulted from molecular mimicry, sometimes killing the original trigger works. Sometimes it doesn’t. I think it depends on the stage of the auto-immune disease. I think it also depends on the individual’s phenotype. Maybe it also varies with the strain of the microbe.

    Auto-immune diseases from molecular mimicry can be very serious. Look up PANDAS (pediatric autoimmune neuropsychiatric disorder associated with strep). My son has PANDAS as well. His PANDAS was just as devastating as his chronic, auto-immune Lyme disease.

    Since he also suffers from allergies and chemical sensitivities, there are times I do wonder if MCAS is his primary underlying diagnosis. The mast cell stabilizers I’ve trialed, however, have only helped to a limited extent. (NeuroProtek, Singulair) Immunotherapy is so much more helpful for him. So who knows what’s really going on.

    • Lisa Klimas April 22, 2016 / 11:00 pm

      I’m familiar with PANDAS, it was actually a potential diagnosis for me given my lifelong life affair with Strep. I don’t have it, but I do have a friend with it. You are right about the danger of autoimmune diseases from epitope similarity, it is genuinely a very serious issue. MCAS can happen for just about any reason, it is secondary to many conditions, including Lyme.

      • Jennifer April 26, 2016 / 12:50 am

        I just read the rest of this series, and I see you already mentioned PANDAS earlier 🙂

  5. Matt June 8, 2016 / 1:36 am

    Great job on the blog! It really has an amazing wealth of information on mast cell associated disorders and has helped me a lot. Keep up the good work!

    In regards to this blog post there are a few things which should be pointed out about the lawsuit brought up against the IDSA and their Lyme disease guidelines. I believe your interpretation of the motive for the lawsuit is an incorrect oversimplification. It was not just that the Connecticut Attorney General didn’t like the guidelines. It was that there was systemic bias throughout the entire guideline creation process. Most notably there were a significant number of members who did not disclose important conflicts of interest which were in direct violation of the IDSA’s own policy on the matter. Due to this misconduct a settlement was reached wherein the IDSA, among other things, agreed to open up hearings to listen to opposing views on Lyme disease diagnostics and treatment for revision of the guidelines. These hearings were held last May. http://www.medscape.com/viewarticle/586226 .

    The Connecticut State Attorney General’s office is not the only institution to have a problem with the IDSA Lyme disease guidelines either. The National Guideline Clearinghouse, a federal database providing treatment information to health care professionals and insurance companies, recently removed the IDSA’s Lyme disease treatment guidelines from their website. This was done because the guidelines were not able to be deemed “trustworthy” as they did not conform to the Institute of Medicine’s standards for a rigorous evidence based review system. https://www.lymedisease.org/idsa-guidelines-removed-ngc/

    • Lisa Klimas June 9, 2016 / 9:11 pm

      I’m an ID microbiologist and remember what happened. Thanks for reading!

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