Am I wasting money on such test?

[gu3vara]

Hi,

I've been considering for a couple months now to pass a panel to detect infections that isn't covered by my insurance.

It tests a lot of the usual things seen in CFS : CMV, mycoplasma, candida, HHV-6, EBV etc...

The doctor assistant told me it is using PCR method. I don't know much about that. Is it good to detect active infections? (Am already waiting for an HHV-6 igm and igg there was done at the hospital)

What should I look for if I intend to be tested for infections? Any good labs? This test is 550$ out of my pocket and I don't want to waste money on it, even my doctor kind of told me to let go and wait for more science regarding causal link of CFS before paying that much. He's the most knowledgeable doctor I can see, he's aware of XMRV research at least, there certainly is no big guns here in Quebec...

He's done some testing in the past, that cost me a lot of money and essentially gave nothing except that I know that I have none existent EFA levels, low hormones and low vit D, all typical of CFS, nothing new here.... An awful way to spend 1000$ :worried:


Thx!

 

[cfs since 1998]

No, I would not do PCR tests for these viruses. PCR can't detect the virus if it's not in the blood, and in CFS patients the virus seems to disappear from the blood and infect the heart, brain, etc. Plus PCR is about 4 times as expensive as antibody testing. Diagnosing chronic infections in CFS can be a guessing game, but with antibody testing you would at least know if you have ever been exposed to a particular virus. For example if you do not have any antibodies to CMV you know you definitely don't have that virus and Valcyte (which targets CMV) might not help you.

Toward the bottom of this page are the tests Dr. Martin Lerner uses, they are all antibody/western blot tests, none of them are PCR. http://www.cfsviraltreatment.com/FAQ/index.html

 

[gu3vara]

thx for the help, I'll save my money!

I'll test for CMV and EBV antibodies at the hospital then, it will cost nothing

 

[PoetInSF]

(I was going to post this yesterday but I got "account suspended" message, making me think that people finally had enough with my annoying mainstream clinical view. But it seems to be working again, so I'll give it another try.)

All those viral tests will only lead to antiviral treatment, and there is no clinical evidence that it works for CFS patients. Before you jump on it, I understand that some people have tried and some reported positive experience. But annecdotes don't add up to a clinical evidence. It may still be worth if knowing your infection status is important. If not, I'd save money.

 

[gu3vara]

words of wisdom

I'm not that particularly interested in being treated with anti-viral, I guess I'm still looking for proof of some kind that I'm ill to show doctors... I won't take heavy medications until there is a consensus on how to treat cfs. I'll stick with natural approaches in the mean time, I don't take any meds except thyroid medication

 

[Misfit Toy]

I have had all of this testing done with various labs and tests. Always comes back positive, but guess what? NO CRAP! Even if it comes back positive, like 90% of the population has elevated titers to EBV or CMV. Somehow, many are living normal lives. The testing isn't important. I don't even flinch when my doctor says, "this came back high or active." Since 1989 that has been what is going on.

I look at it like this, I would rather save my money and treat myself for what I "might" have and see. I am going on valtrex. It has helped many people. I also have valcyte. If you have no intention of wanting anti virals, than why do testing that is expensive?

I am being tested for lyme...but I am wondering why when there are so many false positives. And do I really want to do antibiotics? It's about constantly weighing things...it drives you nuts!

Save your money....try something herbal!

 

[gu3vara]

That's more a curiosity than anything else,that's the reason why I didn't order the test several months ago. I'm not sure I want to go on the anti-virals (yet) because my liver has been struggling for a couple months.

I have a recurrent testicular infection since I'm a teenager, it''s been idle for 7 years and then bang I had a big one right when I became disabled, I would like to know what it is really. It doesn't respond to antibiotics and don't have any STD. It just come and go. Perhaps it's XMRV causing it

I was tested negative for Lyme using on a reputable lab in US so this part is clear. At least it keeps me from worrying all the time if I might have it and not treating it.