Epstein-Barr Virus and Autoimmunity

[Daffodil]

-Yakshemash-

mishmash..i have always believed what you are saying..that something else is causing the inflammation and re-activated viruses....but i do not believe it is an auto immune condition. i also think HERV is unlikely. honestly, the only thing that makes sense to me is a retrovirus but i guess they cannot find one.

the fact is, that many have improved significantly on antivirals. i can swear to that. my old doctor, dr. galland in NYC, told me of a long term CFS patient he had who recovered on acyclovir and went on to a sucessful scientific career after obtaining her masters and phd. several researchers have told me that some people do absolutely respond to antivirals.

love your icon..i am a huge fan of sasha baron cohen. comedy genius

xoxo

 

[MishMash]

-Yakshemash-

mishmash..i have always believed what you are saying..that something else is causing the inflammation and re-activated viruses....but i do not believe it is an auto immune condition. i also think HERV is unlikely. honestly, the only thing that makes sense to me is a retrovirus but i guess they cannot find one.

the fact is, that many have improved significantly on antivirals. i can swear to that. my old doctor, dr. galland in NYC, told me of a long term CFS patient he had who recovered on acyclovir and went on to a sucessful scientific career after obtaining her masters and phd. several researchers have told me that some people do absolutely respond to antivirals.

love your icon..i am a huge fan of sasha baron cohen. comedy genius

xoxo

Jagjemash !

Greetings from Kazakhstan!

Borat wish to meet many people who get better with, you say, antiretrovirals? How many peoples? Is more than can sleep in in Uncle Boroshovddin's house in village? Uncle have very big house. Keep many family and goats.

 

[heapsreal]

Stomping out the EBV with antivirals is a waste of time. It is a product of a much larger phenomenon. Probably an inherited autoimmune condition. It's very disconcerting that we can't just find a way to kill a bug, like the HIV/AIDS people did. Our problem is way deeper than that.

Dr. Montoya sounds like a well-meaning man, but he's wasting valuable time and money giving patients Valcyte. It's isn't going to work. He claims to have found success with this treatments. I would like to see some that replicated.

I was tested for reactivated EBV back in the early nineties. It was completely negative. I went on a many-month cycle of antibiotics, which totally screwed up my gut, and I developed a bad case of IBS.

But what do you know: my EBV results came back reactivated after developing the gut condition. I also tested positive for HHV-6 and Q-virus. Basically, you can take any genetically predisposed "pre-CFS" patient, and make them show reactivated EBV simply by putting enough inflammatory stress on their system. That's what happened to me.

Sorry, i cant agree with you there, antivirals seem to help some and not others, i think its about subsets. Also dr lerners has said that those who dont respond to antivirals who have active herpes infections probably have some other type of ongoing bacterial infection. Im not sure if i would call it an autoimmune problem yet, i know ritux is used for autoimmune issues but even the docs from norway arent sure on this as b cells seem to be a resevoir for ebv. Personally from what alot of the research says, i think we have an immune defiency involving nk and cd8 t cells dysfunction and ongoing infections further suppress the immune system turning into a viscious circle. The longer one is ill the more infections one can accummulate. ongoing stress of these infections then causes hpa axis dysfunction which contributes to alot of the neurological symptoms people have.

I think one has to get tested for autoimmune diseases but also infections common in cfs/me and treat these as well as immune defiencies like nk and cd8 cells. ontop of all this we need to treat the hpa axis problems making sure we have adequate adrenal hormones like dhea etc and also try to regulate the many rhythms in our body such as cortisol and circadian rhthyms which are put out of sync by these hpa axis dysfunctions. I think its going to take a good doctor to put u in the right sub set and treat accordingly, treatment needs to be individualised. I dont think ritux is going to be the answer for everyone just like ampligen doesnt seem to help some but can cure others, valcyte is in the same boat. the right treatment for the right patient.

 

[heapsreal]

i have never heard of EBV releasing chemicals but being latent..this is very interesting indeed.

it might also explain why gcmaf helps even when antivirals might not...?

what i dont understand is...why doesnt long term acyclovir help most people? i read a recent study showing that even latent EBV decreases with acyclovir and that many scientists think that long term acyclovir could even eliminate the virus entirely from the body!

perhaps gcmaf + acyclovir, which is what many are trying. ha. my fog is so bad maybe nothing of what i have typed even makes sense.

the gut flora situation.....this could be a key player as well. i am very glad that they can test now for anaerobic bacteria in the gut....although this is the first generation of tests of this kind.

daff,
i think maf and antivirals sounds like a good option, its going after the infections and helping the immune system to function properly. Like other combo's like ritux and valcyte, or ampligen and av's. valcyte is helping me alot and i have been on immunovir now for a couple of weeks hoping to cement my gains and hopefully when i come off valcyte my nk function is alot better to keep these viruses down??

A retrovirus fits the picture well but we just dont know, otherwise i think the closest thing we can say is its an immune defiency??

 

[MishMash]

... I dont think ritux is going to be the answer for everyone just like ampligen doesnt seem to help some but can cure others, valcyte is in the same boat. the right treatment for the right patient.

I'm waiting for some kind of compelling scientific, or non-scientific evidence, that Valcyte helps anybody beyond placebo. If it did, I would be first in line to take it. I haven't met, or read anybody on this forum, who was seriously helped, in a long-term way by this drug. Even by the loosest of standards, I haven't seen a thing. And it is incredibly expensive!!

When I used to go to ME/CFS support groups meetings, we had various patients who recovered, and would come back and talk about what cured them. The list of "cures" was all over the map. One girl went on the "japanese macrobiotic diet" and swore it cured her. Another guy said it was meditation. A small percentage of people will feel better, and say they are cured, after any treatment they take.

 

[heapsreal]

I'm waiting for some kind of compelling scientific, or non-scientific evidence, that Valcyte helps anybody beyond placebo. If it did, I would be first in line to take it. I haven't met, or read anybody on this forum, who was seriously helped, in a long-term way by this drug. Even by the loosest of standards, I haven't seen a thing. And it is incredibly expensive!!

When I used to go to ME/CFS support groups meetings, we had various patients who recovered, and would come back and talk about what cured them. The list of "cures" was all over the map. One girl went on the "japanese macrobiotic diet" and swore it cured her. Another guy said it was meditation. A small percentage of people will feel better, and say they are cured, after any treatment they take.[/quote

Maybe if u put antivirals in the search engine you will find a few. I dont think anyone is saying its a cure but i will take my improvement from a 3 out of 10 to an 8 with antivirals any day of the week and my improvement is quite visible to how i was before antivirals no placebo affect here.

off the top of my head soc from here has improved alot and her daughteris almost recovered completely. the hhv6 web site has many similar stories and there are many others here. so theres a few u know now. Just google dr lerners antiviral study on cfs and he shows how he has helped people with antivirals.

the list of cures all over the map sounds more like people improving then a cure but the variations of treatments are probably helping because we all need individualised treatments and maybe they were lucky enough to find something that helps.

Im not saying antivirals are going to help everyone but they seem to help alot of people who have active herpes infections.

 

[MishMash]

I read Dr. Lerner's hypothesis, and it boils down to

:
“CFS is a persistent nonpermissive herpesvirus infection of the heart"

He believes in OI and low blood volume, but either thinks they are related to the diseased heart or are just "interesting". I'm happy he recovered, but I'm not convinced his cure applies to ME/CFS writ large. People who respond to Valcyte have some other dynamic going on, that should have be excluded before given the ME/CFS diagnosis.

Is Dr. Lerner still in remission? Has he done any more research? I noticed his treatment takes eight months. Given a period this long, a typical patient is going to go through numerous ups and downs, good and bad phases. I don't know of anybody who has this whose condition is static.

Dr. Montoya is now working on this at Stanford with all the money and resources he needs. So far he claims to have had "good results." If he comes out with results that are legitimately replicated then maybe I'll consider the antiviral strategy as something other than a fad.

 

[heapsreal]

I read Dr. Lerner's hypothesis, and it boils down to



He believes in OI and low blood volume, but either thinks they are related to the diseased heart or are just "interesting". I'm happy he recovered, but I'm not convinced his cure applies to ME/CFS writ large. People who respond to Valcyte have some other dynamic going on, that should have be excluded before given the ME/CFS diagnosis.

Is Dr. Lerner still in remission? Has he done any more research? I noticed his treatment takes eight months. Given a period this long, a typical patient is going to go through numerous ups and downs, good and bad phases. I don't know of anybody who has this whose condition is static.

Dr. Montoya is now working on this at Stanford with all the money and resources he needs. So far he claims to have had "good results." If he comes out with results that are legitimately replicated then maybe I'll consider the antiviral strategy as something other than a fad.

ups and downs are common with everyone, my ups and downs are alot narrow then my ups and downs pre av's but its an improvement all the same.Dr lerner done any studies?? he probably would if there was money for research but that doesnt mean it doesnt work, every aspect of cfs/me is cripple by trying toi get research dollars.

Its up to the individaul to wait for 100% confirmation about antivirals being effective but i wasnt going to wait that long. Antivirals in general and if one is monitored by their doctor is quite a safe treatment, economic reasons aside, why would one not try this?? what is there to lose other then pain and fatigue. Like i have mentioned and its easy to find but there are enough people who have considerably improved to give them a better quality of life. I dont understand why one wouldnt try this and choice a miserable life, but thats my opinion and im willing to try almost anything to get my life back, for which i am almost there.

 

[Daffodil]

i can pretty much guarantee lerner is still in remission cuz he is like 90 and still working.....heard a rumor he is still taking valtrex too.

some people DO recover on anti herpes drugs.. i have spoken to them personally....but they do have to keep taking them or restart the drug from time to time. what does this mean? i dont know. is there something preventing us from making the virus latent like most people do? or is something else causing the virus to wake up?

unless this illness is caused by a new, undiscovered virus, this makes no sense at all. even if its EBV attacking gut flora in vulnerable people, this would NOT explain the outbreaks!?

 

[MishMash]

I hope it's a success