LymeNet Flash: Where did I read 95% of FM patients test pos on 16 band Western blot?

This is topic Where did I read 95% of FM patients test pos on 16 band Western blot? in forum Medical Questions at LymeNet Flash.

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Posted by felinitie (Member # 7403) on :

Hello Everyone,

I read not long ago that 95% of patients diagnosed with FMS who are tested with the 16 band Western Blot test positive for Lyme.

I informed my doctor of this information, as I have FMS and feel strongly it may be caused by Lyme, and he asked me to email him a link to this info.

Problem is, I can't remember where I read it, and I can't find anything about it on google or yahoo!

Has anyone read about this, and if so, could you please post a link to it?

I would very much appreciate it!

Many thanks and blessings.

Posted by Lymetoo (Member # 743) on :

I don't know where the link would be....haven't seen it. But I was dxd with FM 25 yrs ago and i don't think I have a positive band 16. I'll go look.

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Lymetutu

Posted by janet thomas (Member # 7122) on :

I don't think she meant band 16, I think she meant a 16 band test. Why not just request your doctor to order an Igenex Western Blot. Call Igenex (www,igenex.c0m) and ask them to mail yor a western blot IgG and IgM-there's no charge. Then TELL your doc you want the test.

Posted by felinitie (Member # 7403) on :

Hi Janet and Lymetoo,

That is correct, I did mean the Western Blot test that tests all 16 bands, as opposed to those which test only 5.

I had this conversation with my Doctor about FMS, the 16 band Western blot, and Lyme in an effort to get him to even consider the possibility that I may have lyme, to which he was so resistant that he refused to even do the ELISA, for fear it would yield a "false" positive!

Ultimately I think I shall have to pay to have the test done myself (my chiropractor husband can order it), but if it is true that 95% of FMS patients test positive for lyme, I think it would be helpful if more doctors, and FMS patients, knew about it.

I would like to find this info for my doctor as a first step in his lyme emlightenment.

Posted by Lymetoo (Member # 743) on :

OH! I didn't think that band sounded familiar!!

I agree with janet....TEll you dr what you want to have done. He works for YOU. Be gentle though!
www.igenex.com

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Lymetutu

Posted by Lymetoo (Member # 743) on :

quote:
Originally posted by felinitie:
he refused to even do the ELISA, for fear it would yield a "false" positive!
...... if it is true that 95% of FMS patients test positive for lyme, I think it would be helpful if more doctors, and FMS patients, knew about it.

The lousy ELISA should be BANNED. It is more likely to bring a FALSE negative!

Alot of drs and FMS patients are resistant to this idea. Sad, but true.

This link you mention.....Is is from a STUDY?? Drs won't listen unless it's a clinical STUDY. There's VERY little research done on lyme, so it's doubtful the info of which you speak would convince them.

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oops!
Lymetutu

Posted by felinitie (Member # 7403) on :

I really can't remember where I read about it, but my secret fear is that it was actually just some anecdotal information posted by someone on one of the FMS, CF, or Lyme forums.

If that is in fact the case, I doubt it will make much of an impression on my Doctor!

Agreed about the ELISA; I think it is worse than useless because Drs. will only do a follow up Western blot if it is Positive, but they do nothing if it is negative!

Posted by felinitie (Member # 7403) on :

bump