Elevated EBV, HHV 6 -- what does this mean?

[Violeta]

Or it could imply that for an unknown reason some of our bodies are producing abnormal levels of antibodies to an abnormally high number of pathogens.

There is little superior in that, only abnormal.

This might be explained by the body being unable to actually remove the pathogen (disabled Th1 response), a pathogen that needs to be dealt with in a different manner (study EBV and it's methods of replication and avoidance of immune system), and overreaction of Th2 response.

 

[Eeyore]

I happen to think now that antibiotics and antivirals are working in many ways to reduce inflammation and as immunomodulatory agents rather than simply just killing off pathogens. Antibody tests can't differentiate very well between active infections and a hyperactive immune system. I think it's worth a try but keep in mind that it may be the immune system that is the problem, not a plethora of pathogens.

I agree with this viewpoint. Be careful how you interpret elevated antibody titers - it may or may not indicate any difference in the activity of an infectious agent.

If you do decide to treat infections, you probably stand to suffer less harm by avoiding valcyte and using antibiotics on the chlamydia pneumoniae and the mycoplasma pneumoniae. Zithro works pretty well on these as does doxy. Personally I think zithro helps through other mechanisms entirely (primarily by inhibition of mTOR and modulation of autophagy pathways).

 

[IreneF]

I agree with this viewpoint. Be careful how you interpret elevated antibody titers - it may or may not indicate any difference in the activity of an infectious agent.

If you do decide to treat infections, you probably stand to suffer less harm by avoiding valcyte and using antibiotics on the chlamydia pneumoniae and the mycoplasma pneumoniae. Zithro works pretty well on these as does doxy. Personally I think zithro helps through other mechanisms entirely (primarily by inhibition of mTOR and modulation of autophagy pathways).

I've used clindamycin and doxy (at different times) to get my M. pneumoniae titers down but it had no effect on how I felt.

 

[Eeyore]

I was given doxy by an ID doc who was concerned I had Lyme (despite negative testing - but he couldn't figure out what else to do and figured it wouldn't hurt). It made me sick to my stomach but otherwise did nothing.

That's part of why I do not believe that the effects of macrolides (e.g. azithromycin, clarithromycin, etc.) are mediated by some other mechanism than killing bacteria. I get real benefit from zithro. Many others anecdotally have reported this too, and one published study (not big enough to prove anything for sure) did find benefits with it.

 

[BurnA]

So far, the most effective treatments for me have been various forms of immunosuppression. I would try rituximab if it were available at this point. I think there are other monoclonals already used in cancer and autoimmune disease that would be effective. Klimas is pretty excited about anakinra (il-1 blocker) and I'd love to see that studied.

Cytoxan (cyclophosphamide) is also being used, although I must admit I'd be a bit scared of using alkylating agents. For those that do not know, this is an old chemo drug and in high doses produces classic "movie chemo" symptoms... It works by crosslinking DNA and is a derivative of mustard gas used in WW1. So far though there is preliminary evidence that it works in ME patients who do not respond to rituximab. It's used to treat a lot of autoimmune diseases as well.

Can you elaborate on the 'preliminary evidence' that it works in ME patients who don't respond to RTX?
Also, is there any preliminary information regarding relapses from Cyclo?

Thanks : I would certainly try RTX if I could.

 

[Mary]

I feel it's important to address viruses, especially epstein barr virus, as it is found to lead to autoimmunity and cancer. I chose to deal with it with herbal antivirals, herbal immune enhancers, and colostrum.

Violeta - what herbal antivirals and immune enhancers did you use?

 

[Violeta]

@Mary , the antiviral herb that helps me the most is lomatium. The immune enhancer is astragalus, it has two or three other herbs mixed in, but I can't remember all of them. It's Gaia Astragalus Supreme.

 

[Violeta]

So far, the most effective treatments for me have been various forms of immunosuppression.

@Eeyore , what immunosuppressors have you found effective and if they were effective, why aren't you continuing with them?

 

[Mary]

@Mary , the antiviral herb that helps me the most is lomatium. The immune enhancer is astragalus, it has two or three other herbs mixed in, but I can't remember all of them. It's Gaia Astragalus Supreme.

Thanks Violeta! Two years ago my HHV6 number was very high, my GP who did the test knew nothing about it, it could still be high and I'm afraid Kaufman will want to give me Valcyte, which I don't want to take. I've never heard of lomatium, will look it up -

 

[Tammy]

The supplements that were suggested to me for the EBV are Licorice extract, L-lysine, Cats Claw, Zinc.

 

[Violeta]

The supplements that were suggested to me for the EBV are Licorice extract, L-lysine, Cats Claw, Zinc.

Tammy, who recommended l-lysine? Arginine is what helps stop EBV replication.

You can read about it at this link, and I also found studies that explain it.

http://www.longecity.org/forum/topic/54035-control-epstein-barr-virus-reactivation-with-arginine/

It has to do with EBV using heat shock protein to replicate, and arginine helps shut down the heat shock protein, somehow.

 

[Tammy]

Tammy, who recommended l-lysine? Arginine is what helps stop EBV replication.

You can read about it at this link, and I also found studies that explain it.

http://www.longecity.org/forum/topic/54035-control-epstein-barr-virus-reactivation-with-arginine/

It has to do with EBV using heat shock protein to replicate, and arginine helps shut down the heat shock protein, somehow.

There's a lot of info out there about l-lysine against EBV and herpes virus in general.....................I have never heard about arginine helping..........in fact I've heard/read just the opposite..........that arginine can actually trigger EBV to replicate!

 

[Violeta]

There's a lot of info out there about l-lysine against EBV and herpes virus in general.....................I have never heard about arginine helping..........in fact I've heard/read just the opposite..........that arginine can actually trigger EBV to replicate!

I know what you mean, Tammy. I have read the complete reason of how arginine stops the replication but it still will take a leap of faith for me to buy some and take it.

 

[Violeta]

The evidence that herpes viruses are not important in the disease is that we have the same average titers, same levels of seropositivity, and same reactions in general. We don't all suffer unusual herpesvirus outbreaks. If immunity to herpes viruses were impaired, there would be an array of symptoms one would expect, such as lots of cold sores, high rates of shingles, etc.

Hmmmm.....

 

[vision blue]

@Violeta Arginine does opposite things to herpes viruses in vitro and in vivo.

@Eeyore. Some of us do get weird frequent herpes outbreak tho for me was not the initial cause.