Thank you for your response onebeed. I'm not sure how to read this lab report. I will try to write what I think is most telling..

lyme serology, serum, reactive cutoff *0.157
lyme serology serum, borderline cutoff 0.124
Lyme serology serum , Interp. Non Reactive
lyme western blot # 2
lyme western blot, IgM serum (a) Indetermin
lyme western blot, IgM bands (Kda), ser *41
lyme western blot , IgG serum (a) Indetermin
lyme western blot, IgG Bands(Kda), ser *18.28
lyme western blot serum comment lyme western

This is what is listed under Immunology/Infectious Disease. Rhuemy says I have 3 "Reactive bands"..as she said I would need (5) to be treated for lymes. Note: I never had any symptoms or rashes since before or after I developed this nasty sfn.. Now I'm more confused
I will check out the (2) books you mentioned. Ty!!
Sorry if I hi-jacked your thread Healthgirl.

Onebeed, I'm Sorry your PN is severe. My numbers on my skin punch biopsy, according to the Neuro, were "mild" ... My pain and symptoms are anything but mild!..
Lft Calf 4.70
Lft thigh 12.44
No amyloid is detected by the congo red stain.
No evidence of vasculitis or other histological abnormalities
It is good to read you say "It is going to take a long time to grow back nerves"..It's the closest thing to reading something positive.

I can actually explain this in a general sense.

The current Lyme test that you get in your doctor's office was constructed to be very narrow. Why? because it was designed and used for and in a research setting, which means that it was designed in a restrained way so it wouldn't accidentally pull people into the study who don't have cases of Lyme.

What does this mean? In an attempt to not accidentally pull in people who don't have Lyme, they are inherently missing cases of Lyme. This test is accurate 50% of the time - this an average of 3 institutions/publications that looked at the accuracy of the Elisa test. It's really all where they decide to draw the diagnostic line for any given condition in medicine and they didn't do a very good job with this topic.

How does this happen? It's a very circular logic. The Infectious Disease docs study people with positive western blots and an EM (bullseye) rash. They don't include symptoms outside that narrow criteria. So the people who don't test positive on the Western Blot and don't have a EM rash are not included in these studies. It all goes in this tight nit circle and many of us are standing outside, looking in at this and are shaking our heads. This is so maddening. The broad based studies that would include many of us who have neuropathy and other so called non-traditional Lyme symptoms have not been done. There is not much money or research in this area of medicine.

How does this work? These tests do not directly test for Lyme. They test for your immune system's response to Lyme, so in that sense they are very indirect. You can have a negative Elisa/Western Blot if your immune system is compromised. Some people will have that first negative test, then receive antibiotic treatment and their second test will come up positive because their immune system was able to regroup and reactivate to this bug. If their antibodies are tied up due to the high antigen load and there is nothing left to float around in the serum, they will get that negative result on the Western Blot.

What does this Elisa test work best for? Acute, stereotypical Lyme infections. If you have one of those, fantastic. You will probably be treated promptly and recover quickly.

If you are on this message board, you have some type of neuropathy. And if you are really trying to figure out if Lyme played a part in your neuropathy, you already fall outside of that tight nit, narrow criteria and that typical Elisa/Western Blot test you get at your doctor's office will likely be negative, even if you might have Lyme. That is why it is important to use a different test to truly rule Lyme in or out........the pros and cons of alternative tests are a whole other can of worms.

These are great books for people interested, but they might be a little bit intense for some. I will try to link to some podcasts with both of these authors so people can listen to the cliff note versions. But it will have to happen on another day; gotta get back to my work laptop....the joy's of working from home mean that you are always working.

Dr. Horowitz posted a link to this horrifying story on his Facebook page. A man with Lyme was misdiagnosed with ALS. His response to a course of antibiotics for strep throat was the clue as to the true problem.

http://www.nbc12.com/story/31177866/...ally-had-lyme#

_____

I don't think these books are too intense. They helped me make an informed decision about where to go for testing and treatment. I find it tragic when I read about so many people being told by their doctors they don't have Lyme when they are lighting up two or three bands on their western blots. People are on here looking for answers. They usually don't listen when you tell them their doctors are misinformed. Getting enough information can help.

Onebeed , do you mean two or three bands on western blots like what I wrote in my post? My Rhuemy said I had 3 "infected" bands but the Center for Disease Control says you have to have 5 bands to be treated for Lymes, she came right out and said I do not have Lymes Disease. I suffer with SFN , lots of painful sensations. I do not think I ever had any Lymes symptoms from the very beginning. I'm so confused. I believe my doctor(s) are not sure and confused too.

I sent you a private message.

Ty I sent you a PM too. I hope you see it. Im not sure if Im doing it correctly.

Dr. Richard Horowitz on Lyme Ninja Radio podcast:

http://lymeninja.com/richard-horowitz/


Pamela Weintraub on the Katina Makris podcast:

https://katinamakris.wordpress.com/2...ght-radio-911/