LLMD talk

[Guest guest]

I recently went to a Lyme support group where an LLMD was giving a talk. It was

really interesting to me. He seems like a very genuine guy, very knowledgeable,

not extreme, and presenting both sides of the arguments very clearly. Also does

not use IV treatments, or unusual antibiotics, but pretty much only varies his

treatment between 3 or 4 standard antibiotics.

Anyway, he really presented his treatment very lucidly, and what he was saying

made sense, and he kept talking about his success with patients *if* they stayed

with the treatment long enough.

So then I asked the question - what does long enough mean? And he then waffled

a bit saying that it is very hard to say that because so many of his patients do

not stick with the treatment. But on average he would say 3-5 years!!

He says that he would have a patient try stopping antibiotics if they have 1-2

months with no evidence that BB is being killed (i.e., no more herxes) and are

showing no more improvements. He says 50% will relapse, and then they will go

back on antibiotics until these criteria are met again, and sometimes may even

have to go back on the antibiotics a third time.

Then someone else asked, how many patients he has treated, and how many he would

consider cured. And he said over 20 years, he has probably seen 8,000 Lyme

patients. And he said he discharges - meaning that they are cured and no longer

need to be on medication - about 8 per year!!

So, both of those points seemed pretty shocking to me. 3-5 years and a success

rate of 160 out of 8,000 patients. That does not sound any better than placebo.

Other interesting points he made:

He does not think the symptoms that Lyme patients feel are due to toxins being

released into the body, but rather from an immune system reaction - that the

immune system is turned up.

He also does not believe that spirochetes inside the brain cause the cognitive

symptoms, brain fog, etc. He thinks that these symptoms are caused by

inflammation of the blood vessels and that in general the bacteria do not cross

the blood/brain barrier (yes he knows that spirochetes have been found in

autopsied brains, but he says in general brain fog is a result of the

inflammation of the nerves).

He spoke of a recent study that examined the rates of positivity in Lyme tests

in specialized labs such as Igenex and more general labs like Quest, and the

rates were actually the same. He uses stonybrook himself.