This is topic Testing for FL 1953 in forum Medical Questions at LymeNet Flash.


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Posted by Adey123 (Member # 29328) on :
 
Hello all

Quick quick re. testing for FL 1953

My LLMD has suggested I get the following tests done to determine if I have it, all can be provided by Fry labs as far as I know

Smear for Fl1953 and Hemobartonella
A test for biofilm
PCR for Fl1953

It's a costs quite a bit but would help give us valuable data to work with for my next treatment plan - I was wondering if anyone knows about the accuracy of these tests?

I know a lot of the other Lyme test are prone to false negatives, is it a similar case with these?

Thanks

Ade
 
Posted by Catgirl (Member # 31149) on :
 
Yes, there are false negatives with this test. It's an odds game when testing. It would have to be in that little vile of blood. Therein lies the problem with evidence based medicine. It doesn't work for bacteria, viruses, parasites (urine/stool). They don't free float and just wander over to where the blood is being drawn. Western medicine hasn't quite figured this out yet.

Just as with lyme, clinical symptoms are the best way to determine if you have it. If you want to know by trial (and it's less expensive than testing), just change your diet (no fats/arginine--animal products, no fish, dairy, nuts, oils, etc). If you feel better after a few weeks, then you have your answer. I felt better in 3 days, but for some it takes longer (2 months).
 
Posted by seibertneurolyme (Member # 6416) on :
 
If money is an issue then you could just do the smear test first and then wait on the others. The smear is looking for both coccobacilli (which could be bartonella or another pathogen) and also protozoa (babesia or FL1953 or others).

The smear will not tell you the strain of any pathogen, but if you have some unusual strain then the additional PCR testing might not give you any more info.

Bea Seibert
 
Posted by Keebler (Member # 12673) on :
 
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Not sure about testing (thought Fry Lab was the only place to do that) but just came across this excellent article yesterday.

note: some thoughts of this author differ (i.e. she questions the lowering of essential fatty acids) from the main researcher of this particular infection.


http://protomyxzoa.org/wp-content/uploads/2013/05/Protomyxzoa_rheumatica.pdf

Protomyxzoa rheumatica: Clinical observations and experience

- A 21-page pdf - May 2, 2012

- by a well-respected ILADS-member LLMD who has presented on other topics at ILADS conferences
-
 
Posted by Adey123 (Member # 29328) on :
 
Thanks everyone for your help on this!
 


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