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.