Chronic Lyme Disease is there such a thing?

[Jules A]

Right upfront I have to say that I do not appreciate "Lyme Disease Specialists". There is no known credentialing process that I am aware of and it is my understanding that anyone can hang out a shingle with this self-proclaimed title which makes me very suspicious.

Does chronic Lyme Disease even exist? After recently coming across several people with this diagnosis and discussing it with a knowledgeable colleague I decided to do some digging around. There is a fair amount of data indicating maybe not:


http://www.ncbi.nlm.nih.gov/pmc/arti...ihms114731.pdf

[Special Kay]

Well, I have a friend who had undiagnosed Lyme for a long time, and it was only diagnosed once his knees started to swell up and stop functioning properly.

He didn't have any psychological/psychiatric complaints, though, only the orthopedic issues, which took some years to clear up, but they did clear up eventually.

So if that's what you're talking about, I think it does exist.

[22cyclist]

I don't know about chronic like MS, but I had a friend that had Lyme who they thought had MS. He was a pilot, and they told him he could no longer fly. Finally after much testing, he tested positive for Lyme. After 6 months on IV antibiotics, and 3 years on oral antibiotics it seems he is cleared of the disease.

He had CNS involvement that looked like MS. His first and second LPs came back Lyme negative. The third one was positive. He just never quite fit the MS dx, you know? Now he is back flying again and is happy and healthy.

So while it is not especially chronic, it can get to the point of hard to treat.

[cosake]

My aunt has what I would term "chronic" Lyme Disease. It comes and goes in "flares" over the last 20-25 years.

Each time she has a flare of Lyme symptoms, they get her onto antibiotics and it resolves. She lives in CT so it is not surprising that she was diagnosed so long ago.

[Jules A]

Interesting stuff. Thanks for replying.

[rdmc]

He had CNS involvement that looked like MS. His first and second LPs came back Lyme negative. The third one was positive. He just never quite fit the MS dx, you know? Now he is back flying again and is happy and healthy.

.

I have no doubt that some people have Lyme, and if an LP proves it, then I'm convinced. But I've had a couple friends who were desperate for answers to their varied health symptoms.

So they found a Lyme specialist, got a Lyme diagnosis from a "special Lyme lab" and went on antibiotic IV treatment for months on end, but their health issues never seemed to resolve.

My problem with their diagnosis was that there supposedly are only a couple labs in the country that can identify Lyme and they both had negative Lyme tests until their blood samples were sent to these specific labs, and then, voila, positive Lyme and diagnosis.

I just have a hard time believing that only two or three labs in this entire country can identify Lyme, and in reading forums, I've never heard of a negative result coming back from these Lyme labs.

So color me a little skeptical. And as far as getting better, since they never did, they just kept thinking they needed more antibiotics and the doctors kept Rx antibiotic after antibiotic (they even had pic lines because of the constant IVs.)

[Jules A]

I have no doubt that some people have Lyme, and if an LP proves it, then I'm convinced. But I've had a couple friends who were desperate for answers to their varied health symptoms.

So they found a Lyme specialist, got a Lyme diagnosis from a "special Lyme lab" and went on antibiotic IV treatment for months on end, but their health issues never seemed to resolve.

My problem with their diagnosis was that there supposedly are only a couple labs in the country that can identify Lyme and they both had negative Lyme tests until their blood samples were sent to these specific labs, and then, voila, positive Lyme and diagnosis.

I just have a hard time believing that only two or three labs in this entire country can identify Lyme, and in reading forums, I've never heard of a negative result coming back from these Lyme labs.

So color me a little skeptical. And as far as getting better, since they never did, they just kept thinking they needed more antibiotics and the doctors kept Rx antibiotic after antibiotic (they even had pic lines because of the constant IVs.)

I agree about the "special laboratories" and long term antibiotics have not been shown to be a valid treatment or a safe treatment from what I have read.

The other thing that makes me wonder is why there are far more women diagnosed with this than men?

http://fhs.mcmaster.ca/medicine/infe...es-Disease.pdf

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2913779/