Anyone feel like this?

[vamah]

So are you on anti virals?

Yes. I've been on Valcyte for almost 3 weeks. Started at a high dose and can drop to a maintenance dose on Friday. It will take at least a few months to know if it is working but I have good reason to think it will. Valcyte is a very kick-ass drug for herpes viruses, but VERY expensive if you don't have insurance in the US. I am not sure how it works in the UK. The thing about viruses like HHV-6 is that almost everyone has had them as a child, so a lot of doctors will tell you that positive antibodies just mean that you had the disease once and don't indicate they are a problem now (I had an infectious disease "specialist" refuse to even test me because of that). Of course that's bullshit. Just like the chicken pox virus (also in the herpes family) can reactivate later in life as shingles, HHV-6 and EBV can reactivate as neurologic viruses and cause CFS symptoms among other things. You want to get tested for early antigen in the case of EBV (no one who had mono as a child should have early anitigen antibodies now) and IgG (long-term anitibodies) for HHV-6. A normal HHV-6 IgG result for someone who had the disease (roseola, I believe) as a child is 1:80. 1:320 is considered very high. Mine was 1:1280.

 

[Fuzzyhead]

You mention anti bodies if you test positive for an anti body and then get tested again and it's negative, how does this work? The reason I am asking is because I tested positive for gastric parietal antibodies last June but I got tested again a few weeks ago and it came back negative. My gp just said oh don't worry it's ok now, but I have read if you have been supplementing with vitb12 it can give false negatives.
I am glad you think your on the right track finally and hope the antivirals make you better.

 

[vamah]

You mention anti bodies if you test positive for an anti body and then get tested again and it's negative, how does this work? The reason I am asking is because I tested positive for gastric parietal antibodies last June but I got tested again a few weeks ago and it came back negative. My gp just said oh don't worry it's ok now, but I have read if you have been supplementing with vitb12 it can give false negatives.
I am glad you think your on the right track finally and hope the antivirals make you better.

I don't know anything about the particular antibodies you mention. Looking on Medline, it looks like they indicate lack of a substance that helps absorb B-12. So supplimenting with B-12 should help you if you have this problem, but I am inclined to say that it shouldn't affect the test. I don't know for certain though. It may be that taking the B-12 is helping the underlying problem, so your antibodies have gone back to normal. I would ask your doctor is it can give a false negative.
As far as herpes viruses, your titers will get lower if you had just an accute infection (mono, for example) as time goes by. They will stay high if you have a chronic infection that your immune system is not able to handle on its own. But there will always be some antibodies. This is why, if you get positive antibodies for HHV-6, some doctors will tell you "Oh, everyone has these antibodies. It just means you had the illness as a child." You have to look at the titer level. As I said 1:80 is typical of a healthy person. 1:320 is not.

 

[Fuzzyhead]

Ok thanks for that. I have just been looking at glandular fever and I didn't know this was part of mono and epstein bar virus too.
I always wonder if it stays in your body dormant once you have had it and reactivates later on. Who knows ha.

 

[vamah]

Ok thanks for that. I have just been looking at glandular fever and I didn't know this was part of mono and epstein bar virus too.
I always wonder if it stays in your body dormant once you have had it and reactivates later on. Who knows ha.

It always stays in your body. It can reactivate due to stress, other illness, a hole in your immune system, etc. Don't let anyone tell you otherwise. Viruses are bad news because they never really die. In most people the immune system just keeps them in check, but any immune problems and they can surge right back.

 

[Fuzzyhead]

I will definitely be mentioning this to the immunologist. I had this when I was 18 and I have only just read now that it's part of mono and ebv and I am 43 but been ill for 12 yr.

 

[Allyson]

Ok thanks. Are you in the uk? I have had numerous tests over the years, endoscopy, sigmoidoscopy, brain scans, Abdominal scan, rheumatologist and the most that's been found was gastritis, a gallstone and told ibs.
I see an immunologist next month.

the symptoms you list re the classic ones my doc states are due to EDS due to the issues discussed above - and worse if you are upright in many people which is a giveaway.

See this thread for more on EDS tho it does not discuss anxiety - same thing happens to me in very hot weather for the same reasons.
http://forums.phoenixrising.me/index.php?threads/is-me-due-to-ehlers-danlos-syndrome-stretchy-veins.20351/

 

[Iquitos]

I hear that. The only encouragement that I can give you is that I have had this for 29 years and I am able to have some semblance of a life. I was very sick at first but decided to the go the alternative route. Good call since the medical community has little to offer me. I am able to work from home albeit part time and sporatic, and I have a social life as long as I pace myself. The fatigue is debilitating I agree. I am very proactive in alternative health but it can be pricey. I am finding that the less I eat the better I feel. The worst thing I can do is get constipated and backed up with toxins. I take an herb called Moringa everyday religiously. I do alot of other stuff. I try not to feel sorry for myself because that is a slippery slope to depression. I must say that is hard to do some day. That's why this forum is here. We are not alone.

Zensational, would you please join us at http://forums.phoenixrising.me/index.php?threads/moringa-oleifera-anybody-tried-it.23406/
and share your experience with Moringa?