A CONFIRMATORY TEST FOR MY LYME DISEASE: RUN BORRELIA CAUSE I'LL BEAT YOU REALLY SOON! ;)

[5150]

how much money is needed to treat a long-term , never been treated, if Lyme positive?
approximately. And wouldn't it be convenient to replace the "Mess" that has become SEID with a more socially acceptable , less stigma , Lyme Disease?

if so, the CDC has finally figured its' way out of their own mess.

 

[heapsreal]

Immune exhaustion is found in chronic infections such as hepatitis and hiv. Its seems that nk cells and t-cells are produced at a fast rate and over time their function is reduced.

I wonder if this happens with many mecfsers and lyme patients. Low nk function is also a possible sign of immune exhaustion. I guess low nk numbers and t cell numbers also applies not just function.

I also wonder if a subset dont lose this immune cell function and this can make some with increased risk of autoimmune issues. Possibly those with normal immune cell function but increased nk and t cell numbers.

I still think there is some underlying infection/s with both which and need to find them and treat them??

 

[duncan]

5150, I would agree that late stage Lyme has less stigma than ME/CFS, and many cases are treatable. But once treatment is rendered, and if symptoms remain or morph, the result is almost as contested and laden with stigma as ME/CFS.

Both diseases bring out the bigot in clinicians. Eye-rolling and contempt and intolerance are standard fare, regardless.

heapsreal, I've diagnoses for both, and my nk cell value is low at 5. Never looked - that I know of - at my t cells. The standing question: Did my Lyme cause my ME/CFS, or did my ME/CFS leave me more vulnerable to treatment refractory Lyme, or is one disease masquerading as the other - or is something else not on the table to blame?

Ok, so actually that's four questions.

 

[Andey]

Sorry for derailing but maybe I could get a quick answer here
As I understand Lyme diagnostics could be tricky but if I have negative IgG and IgM ELISA for Borrelia burgdorferi then I should be clear ?

 

[duncan]

Percentages favor you being in the clear, but an ELISA is no guarantee either way. Estimates of its accuracy can range less than 60%, if I remember correctly.

Personally, I'd ask for a Western Blot and a C6 Peptide to feel more confident. But depending on where you live, those options may not be available to you with a negative ELISA.

If you're in Europe, there are a couple of other options I think.

 

[Andey]

Percentages favor you being in the clear, but an ELISA is no guarantee either way. Estimates of its accuracy can range less than 60%, if I remember correctly.

Personally, I'd ask for a Western Blot and a C6 Peptide to feel more confident. But depending on where you live, those options may not be available to you with a negative ELISA.

If you're in Europe, there are a couple of other options I think.

I could do a Western Blot here but... I was under impression that ELISA/IFA tests are more sensitive but less specific then WB. Thats why it is placed before WB in CDC testing guideline, ELISA and IFA for screening, WB for confirming.
I am more concerned that maybe chronic Lyme that CFS-rs often have is not detectable by antibody serology at all.

 

[duncan]

Eh. Not everyone agrees with the CDC on its 2 Tier testing protocol.

If the expense is not an issue, I'd opt for the WB or the C6, or both.

Diagnostics within the Lyme environment are hotly contested and polemic issue. There is no simple answer to your legitimate concern.

 

[Andey]

Eh. Not everyone agrees with the CDC on its 2 Tier testing protocol.

If the expense is not an issue, I'd opt for the WB or the C6, or both.

Diagnostics within the Lyme environment are hotly contested and polemic issue. There is no simple answer to your legitimate concern.

Thanks for clarification )
So far I will stick to idea that I am clear, coz I also have 2 evaluations from 2 different infectionist docs and both said that I dont have symptoms and testing is kinda useless. And forest exposure I had only in childhood. Even this test I made by my own just to exclude Lyme from my worries...probably it didnt happen this way, thats a shame.
Maybe I will do a WB test in a future, but waiting every test result is stress and now I am on stress avoiding strategy )

 

[Daffodil]

@serg1942 ...KDM now uses Armin Labs in Germany for the LTT ELISPOT Borrelia test.

It looks like Infectolabs and Armin Labs are related somehow...Dr. Armin Schwarzbach i think is listed somewhere as a partner with Infectolabs

 

[maryb]

Armin Schwartz used to be one of the directors of Infectolab (BCA clinic) he's set up his own lab now ndependent of Infectolab - Arminlab, not sure if he fell out with BCA, but he gives advice as well on the testing at his new lab.