So Confused....

[icesktr189]

My doctor brought up CFS again after I tested positive for EBV again.

So what does this mean in terms of.POTS? I didnt have all this when I first came down with pots and two years later it decides to just randomly show up?

All this is sooo confusing!! Between severe allergies, POTS CFS I feel like my head is spinning. Half of the time I cant figure out what symptom is which or which med will help me. Then add anxiety into the mix and I just feel like giving up. None of this makes sense to me. I wish I could have something well known and less confusing!

[HopeSprings]

Dani - I'm in the same boat. After a whole lot of blood and urine tests, the only thing significant results (in my Dr's opinion) are from EBV testing. I showed him positive results (from the late 1990's) for EBV and he thought the Early Antigen one could signify a persistent infection - so we re-tested and it's still positive. The lab report says "acute late infection." However, 10-20% of "healthy people" can show positive on EA. But he believes my symptoms are due Chronic Fatigue Syndrome, which he links to EBV. He's recommended a "CFS specialist" in the city and is adament I see her. Here's the little that I know about this. CFS and POTS have a lot of the same symptoms. Lots of people with CFS have orthostatic intolerance. EBV (and HHV6 & CMV) are linked to CFS - there have been studies showing that some people who go on antivirals can improve their symptoms... Look up Dr. Jose Montoya & Dr. A. M. Lerner. I don't know if I buy it, but I don't discount it either. I think I'm going to go see that Dr. and get her input. What sort of lab results did you get? And what does your Dr. want to do? Would love to hear input from others with knowledge about this.

[toddm1960]

I've carried a CFS diagnosis for 10 years (I'm also chronic EBV), as of today there is no diagnostic test for CFS (I do think they'll end up with one) So this diagnosis is one of exclusion, once I was positive for POTS and mitochondrial disease there is now a cause for my exhuastion......so CFS was dropped.

[HopeSprings]

Todd- do you test positive on the Early Antigen portion of the test? I don't really understand what mitochondrial disease is - can't seem to wrap my head around it. The question is what causes this problem with the Mitochondria? I was reading that EBV can do something to mitochondria. So do you think EBV is irrelevant and not the cause of our problems? Do you believe in CFS? (be free with your opinions - you wouldn't be offending me at all.)

Here's one little article (I have no idea what it's talking about, but seems to link EBV and mito)

http://www.ncbi.nlm.nih.gov/pubmed/15950179

Naomi

[icesktr189]

Well my doctor believes that once EBV lasts longer than 6 months it turns into CFS? I really dont even know LOL

Problem is that I didnt have any EBV infections when I first came down with POTS. I know that most CFS have POTS, but when it is backwards how does that fit in? I just dont think its a coicindence that it just randonly decides to show up after a couple years of my POTS diagnosis. I just dont want all my symptoms to now be put down as CFS and not treated because I know that is a common occurance. I am see a rhemetologist because of a high ANA ( he rescheduled my appointment and now I cant get in for another month..grrr). I just dont understand why they dont do high doses of antivirals over a longer period of time for the EBV. My doctor did try them out in the very beginning for like a month and just stopped giving me my pills?

I have heard about Chronic EBV and really dont understand how that correlates with ME/CFS. Then the whole ME/CFS name change is confusing because I saw CFS showing epstein barr virus, whereas the ME definition is a whole different thing?

[HopeSprings]

I see what you're saying... so you were tested for EBV before and during the first few years of having POTS and it was negative? Yeah I'd be making the same argument -- how could it be the cause of POTS if it came later. What did your Dr. say about this? The studies I read about EBV did have people on high doses on antivirals for months, sometimes years. I think the correlation between CFS/ME and EBV is that some Dr's feel in a "subset of patients" this is the cause. I don't like it... it's just too easy for them to say "CFS" because it can't be proven or disproven!

[toddm1960]

I do believe in CFS but because of the CDC and the push to make it out to be a psychiatic disease, as soon as I had other confirmed diagnoses I dropped CFS. Why let lazy doctors who couldn't find anything wrong with me tell it's CFS and I'm making it all up. Then stop looking for what was really wrong. I think there will be a day when there is a test for CFS, and could some of us have POTS and CFS.........sure. But until then why bother with a disease most doctors ignor, and stop treating you.

[icesktr189]

Yeah they kept testing me for mono when I first came down with pots because my fatigue was so bad. All them were negative and no history of previous infexctions. Then all of a sudden three months after I give birth I get EBV and it never goes away. They keep showing active infections. Some are higher than others, but my immune system cant fight it off all the way. When this happens, I develope severe allergies out of nowhere. Then of course my pots flares and then the.rest is history.

They dont try to even connect any of this together. Based off the positve high ana, severe onset of allergies and reoccuring EBV, I truley think I have some sort of.autoimmune disease. It showed up right after birth which is common. Just have to figure out which one. My mom has crohns and my uncle has ulcertive colitis. Then how does pots play into that? Ahh makes my head spin even more lol. Like I said, why couldnt I have something like diabetes? it would be so much easier to understand.

I have tried to not get the cfs diagnosis because.i am trying to get on disability and that would hurt my case. I can just see the judge looking at me likd im crazy.