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Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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EBV is one of a number of pathogens that goes from latent to active in inflammatory zones. So it can dump live virus from B cells into the brain or gut lining if they are inflammed. If inflammation continues, then dumping of latent virus will continue. This is perhaps one reason why it keeps reactivating. Bye, Alex
What type of co-infections would one have to have to inhibit the antivirals from working? I was not informed of anything more than the elevated antibody titers to EBV & HHV6. I am CMV negative. In 2009, I took Valcyte for six months and found the drug hard to tolerate with a lot of body pain and debilitation. I did not find any difference in my symptoms at the end of the six month period. Perhaps if I had stayed on it for a year, there might have been a more positive outcome.
Six months of Valcyte is usually not enough to treat ME/CFS. About 2 years is looking like the most effective treatment length. If you're going to have a difficult period with Valcyte -- and many do -- it will probably occur during the first 6 months. After that it is not so bad. There is some speculation that the difficult period is the result of the immune system coming back online and going after infections that had been running wild while the immune system was poorly functioning. Once that settles down, the inflammation and flu-like feelings improve.
IMO, Valcyte is not for the faint of heart. To get the most out of it you need to take really good care of yourself throughout treatment -- LOTS of rest, fluids, healthful food, appropriate supplements -- and be willing to live through the rough period if you have one. I think it also pays to take care of some of the "easier" common ME/CFS problems first so you're in the best shape to handle Valcyte. For example, I'd do a methylation protocol beforehand and deal with any food allergies. I'd also go after infections that respond to antibiotics either beforehand or simultaneously. I don't think the co-infections "inhibit" the antivirals so much as they continue to stress your immune system so that it does not work as effectively as it needs to for an antiviral to work well.
I experienced a pretty aweful neuro reaction from Nexavir (intense dizziness, knocked down, visual changes, vertigo...which persists to some degree--worsened autonomic dysfunction still...) After few months of recovering somewhat, though still more dizzy than before--
i'm on to the next-- this time--Antiviral next-- probably Famvir
For reference, my "stats" are: EBV, HHV-6, low NK cell function,
I'm hoping now AVs/famvir will lower viral reactivation load, and then in a few months i can try another immunomodulator again--Immunovir this time-- to stimulate NK cells.
I just hope hope hope I can tolerate the antiviral, and it's not like the first immunomodulator I tried!
As Heaps and others note, it does seem like order-of-trying things matters.
I was actually advised to try immunovir next then the AV, but i was so knocked down in scary way by nexavir...I think it's AVsfor me...
Any thoughts on this all?
I Wonder in part how long I should be on Famvir/AV before trying immunovir/immunomods again.. A couple months? .I'm pretty certain i need to do both (and plan on staying on the AV)-- just want to give the Famvir/AV a shot to perhaps work a little magic/ease the immune burden first...before bringing in the big guns again!
Peace,
Htree
Immunovir works differently then nexavir, so hopefully u get a different/good reaction. But like u said start with famvir until u feel stable on it then add immunovir, 3 months as an estimate. It took me 3 months to notice famvir helping. Plus adding one thing at a time makes it easier to work out what is helping and what isnt. If u can get nk function tests easy i would look at getting another after 3 months of famvir, sometimes lowering viral load can be enough to improve nk function??
I see my doc next week and will talk to him about immunovir and hopefully get a script and add it in a few weeks. Hopefully i can let u know its working well with antivirals.
I think your doing the right thing going after the infections you know you have and then try to strengthen your immune system. Also maybe if u havent already, get tested for the common bacterial infection in cfs and also a good hormone profile, especially dhea/cortisol and look at treating these things but same as with immunovir, just add things 1 at a time and give it a few weeks/months before adding the next thing.
keep us al informed,
good luck
Thanks Heaps, I appreciate your thoughts
You say nexavir and immunovir work differently? I thought both aim to stimulate NK Cell function--i assumed similar mechanism? This not the case? (I haven't read, just assumed-- do you have a particular source of info there to share possibly?).
Thanks!
I will keep all posted indeed.
Good luck with your immunovir journey!
Hello Everyone,
My EBV titers were elevated but I was told by a doctor who is well informed with CFS that in order for an anti viral to be effective, the EA has to be elevated and more than once. Since my Early Antigen was negative, the doctor decided the anti viral would be of no use. I am assuming that the EA shows reactivation. Who really knows???
After ten months on Ampligen, my energy has improved and I feel less sick but I still have to be careful not to do too much. Judging from my continued symptoms, I feel the EBV & HHV6 levels are still high. I wonder if there is much difference between Acyclovir and Famvir.
Hi Lee Ann, Before starting the Ampligen in Oct. 2011, Dr. Klimas ran an extensive number of blood tests. The Epstein Barr Virus test results were as follows:
The EBV VAC IgM was 1.97 AU/ML This is the mono acute antibody which was negative
The EBV Early Antigen IgG was 30.51 AU/ML This is the mono reactivation antibody which was positive
The EBV Nuclear Antigen IgG was 182.79 AU/ML This is the mono chronic antibody which was positive
However, the overall incidence of type 2 EBV infection was 10%, which is close to that observed in the earlier work with healthy carriers and substantially lower than that seen in HIV-positive homosexuals. We infer that type 2 EBV is relatively rare in the general Caucasian population but has become endemic in the homosexual community.
niall - Dr. Klimas didn't run a EBV VCA (Viral Capsid Antigen) IgG?
Not sure where I read it, but I think it was on Lerners website or Montoya's website stated that if 2 of the 3 IgG (EA, VCA or NA) were elevated above the normal range then reactivation is to be expected, especially if one of them is the VCA antibody.
I think that this is something that needs to be ironed out because it is hurting a lot of us depending on which
theory that your doctor follows. When I say doctors I'm including many of the major player doctors as they seem to all have differing criteria.
Montoya strongly believes that HHV-6 is a serious problem when EBV or CMV are activated as well. His concern is that the commercial laboratories (Quest, LabCorp and other) do not utilize testing procedures to adequately test for HHV-6. It is similar to XMRV in the fact that it has very low copy numbers and is easily missed on high throughput labs. The only lab he uses for HHV-6 is Focus Diagnostics which uses "Research" methods for HHV-6. It is much slower this way, but due to the low copy numbers it is much more accurate. He also gives the impression that HHV-6 is a much more serious virus than most doctors and reserachers believe. It likes to hang out in the brain and it doesn't take high copy numbers to cause serious problems in the brain.
Montoyas ongoing study and the CFI project are probably going to bring all of this much more into the light where it should have been years ago. I'm really looking forward to these to studies and the CSF study by Dr. Bariniuk.
Sorry if you've answered this Niall, but what dose of Ampligen are you on? You don't feel the Amp itself is enough to "beat down" the ebv&HHV6 right? (i'm another Ampie)
I definitely do not feel that Ampligen works well on EBV and HHV6 but it does help in other ways but I'm not sure how.
This is my fear and in fact, in my 7th month, describes how I'm feeling. I don't know what the heck to do after this (since i moved here to the US to get Amp).