Sunday, August 22, 2010

The Semantics of Lyme

Yesterday I read an article online that at first pissed me off. I try to keep an open mind so I kept reading. By the end it only half pissed me off. The article is entitled  Another Perspective on Lyme Disease it was written by David Itkin, an infectious diseases doctor in Portsmouth.

In the first paragraph he defends the IDSA and their Lyme guidelines. Generally I would have stopped reading right there, but he also said that the guidelines work for the majority of his patients. I wanted to know about the minority and his opinion there.

Seeing as I know of thousands of chronic Lyme sufferers I’m going to have to say, “Sorry David, we aren’t that rare.” While it is hard for me to get over my bias of anything or anyone who says the IDSA got it right, I don’t think that Dr. Itkin is actually discrediting us or our illness. He isn’t the first person to say calling it Lyme disease isn’t accurate. Even chronic Lyme isn’t really telling the whole story.

How many infections do you have? How many imbalances? How many active viruses and bacteria unrelated to Lyme? Parasites, amoebas??? Lyme is only one piece of the illness we chronic sufferers are dealing with. Perhaps it was the catalyst, or the straw that broke the camels back but it isn’t our only problem, for many of us it isn’t even the most pressing problem.

It seems like Lyme is the common denominator, the thing that we all share, but after that our illnesses are all unique and vary greatly. Some of us suffer physical pain, some have more neurological symptoms. I have digestive problems, others have heart problems. In my personal case when it comes to treatment, actual Lyme disease has never been a major player. For me it has been Bartonella, viruses and bacteria unrelated to Lyme. Oh and I had those worms and amoebas to deal with too.

Dr Itkin says in his article; “I do believe that there is a true medical condition (or conditions) that we are currently unable to characterize…”

I can live with that. What I think he fails to acknowledge is that we call that condition, Chronic Lyme Disease. An accurate description or not, it has been given a name. Arguing semantics isn’t helping me or anyone else. Stop fighting about what it isn’t, we all know that it isn’t just Borrelia Burgdorferi.

There is a whole lot of Dr Itkin’s opinion that I don’t agree with. I give the patients a lot more credit than I feel he does. I don’t think that calling Lyme the carrot to the desperate is fair at all. My doctor’s were very upfront about the illness, the complications, and never once lead me to believe that I simply had Lyme and nothing else. In there opinion it is also an inaccurate name for the chronic illness I have.

My LLMD often talked about my autoimmune disorder more than Lyme disease. My current doctor is treating me because I am ill and we are working to build my immune system back up while attacking any bacteria, viruses or imbalance that arise.

I’m not very good when it comes to politics, but I don’t see how creating legislation to allow doctors to treat patients without fear of losing their medical license is a disservice to patients.

Dr Itkin fears that such legislation would lead to “cookie cutter” diagnosis and treatment. He says, “A compassionate provider may decide on a case-by-case basis that a patient deserves treatment that diverges from standard conventions. A law is not needed for this.”

I think he got that last part backwards. It appears that we do need a law to allow our providers to decide on a case-by-case basis that we need treatment that diverges from standard conventions. Without it we are in danger of only being allowed the IDSA “cookie cutter” diagnosis and treatment.

Originally posted by Ashley on Lymenaide


Alix said...

This is great. I can't stand these know-it-all docs who dismiss patients because their illness somehow doesn't fit in their diagnosis manual. I'm glad this guy acknowledges some don't fit into the cookie cutter "2 - 4 weeks of doxy and you are done," but he is a wuss not to define what the rest of those people are suffering from and how big that population really is.

Lyme is real said...

Newsweek just published an article ( that really upset me. People read such an article and see Harvard and Yale and assume they are getting solid scientific medical information. Instead, the lies can cost someone their livelihood or worse, their life. It seems criminal to me.

Marti said...

What a great post-

I love how you clarified how we all have the common denominator of Lyme, but beyond that, all of our disease is unique.

I noticed you said you had to deal with the worms and amebas. I am currently dealing with it as well. How did you get rid of yours? How did you know that you got rid of them? I haven't seen anything in my stool yet. I have roundworm and ameba hystalitica (sorry about spelling) My doctor said this is difficult to get rid of. He wants me on Alinia and coconut oil for a month.

Please feel free to email me at paschalltwin@yahoo in regards to my questions.

Joanne said...

Good post. I am afraid I bottled out and didn't read the whole of Dr Itkins article once I realised he was pro IDSA.

I think ILADS doctors are well aware the Chronic Lyme name is doing us no service. The London ILADS conference was on the 'Decade of the Microbe' and it was very clear listening to the Lyme Doctors presenting from US, UK,Germany, and France that we most definitely are not talking about just Borrelia.
However the popular press when aligned with the IDSA are only talking about Borrelia.