Discussion in 'Latest ME/CFS Research' started by heapsreal, Aug 31, 2012.
Sorry for posting the above link so many times, its one of my favourite links.
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.
I won't know about EVB until I test again but I think it is put back.. how to keep it there is the question. Also wonder if the unidentified parsite and bacterai could be the cause? I guess I will know when I fiinish this protocol to kill the critters and test. I finish the first round Monday then wait 5 days and do it again. I hope the herbals do it and I don't have to go to drugs. I was will to go to both but I was told too toxic.
Yes, Alex my inflammation is down from what it was but still going. I won't know how I am with that until I repeat all the immune testing in the later spring. I may do it earlier. I have to get through this parasite thing first. I sure wish I knew where I got an unidentified parisite and expecially how long I have had it. I cannot help but think it could have put me back in this mess.
Thanks for all your wriitng..love the blogs..always read them..
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 tried valcyte several times for short periods and couldnt handle the 'side effect' which was increased fatigue more then normal and bad depression. After these short course i did feel slightly better so knew there was something in it for me. While trying valcyte i had ongoing sinus infections and had my dhea tested as well which came back very low. i treated these things, small doses of dhea got my levels into normal range and antibiotics long term for sinuses. The next time i started valcyte i didnt have any issues at all. After a few months i did get some strange muscle pains and stiff neck for a few weeks. 5 months now i going well with valcyte.
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!
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,
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?).
I will keep all posted indeed.
Good luck with your immunovir journey!
just posted an answer for you and lost it, bugger.
I was considering nexavir but price might slow me down. now apparently from what i heard from a friend here and read from info from KDM, nexavir strengthens the cell walls stopping viruses entering the healthy cells. It may indirectly increase nk function by lowering viral load??
Immunovir is classed as an interferron inducer, interferron has direct antiviral activity as well as improve nk function. I havent used either but did use cycloferron, an interferron inducer and it did help symptoms as well as increase nk activity but it didnt increase bright cell nk activity which was tested in the bond uni cfs study, so got a partial response from cyclo. Now i want to use immunovor because i havent used it before but also because the queen of nk fucntion Nancy klimas recommends it. These immune modulators are suppose to be stopped every few months as the immune system gets use to the stimulation, so a break is needed. I have a theory and i was thinking of using immunovir for 2 months and then use cycloferron for 2 months and continue on with the famvir.
hers some links that might interest you http://www.arbidol.org/27390604.pdf
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???
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
I've read some great things about monolaurin for treating ebv and other viruses. I couldn't tell a difference when taking it but the in vitro studies of ebv were stunning..
There are lots of articles written about it.. but here is an excerpt... no particular reason I included this link... just couldn't find one from pubmed..
been shown to be active against influenza virus, pneumovirus, paramyxovirus
(Newcastle), morbillivirus (rubeola), coronavirus (avian infectious,
bronchitis virus), herpes simplex I & II, CMV, EBV, and HIV. Monolaurin
disrupts the lipid bilayer of the virus preventing attachment to susceptible
host cells. It binds to the lipid-protein envelope of the virus and
inactivates the virus. Monolaurin inhibits the replication of viruses by
interrupting the binding of virus to host cells and prevents uncoating of
viruses necessary for replication and infection. Monolaurin can remove all
measurable infectivity by directly disintegrating the viral envelope.
Monolaurin binding to the viral envelope makes a virus more susceptible to
Monolaurin is effective against yeast and fungi, staphylococcus aureus and
streptococcus agalactiae, chlamydia trachomatis, candida albicans, giardia
lamblia, ringworm, H. pylori and gonorrhea. Monolaurin is non-toxic and
listed in GRAS (Generally Recognized as Safe) as a food emulsifier. A
therapeutic dose of monolaurin is generally 1800 mg to 2400 mg per day.
I don't know how large a role this would be in ebv treatment but it seems promising. It would be great if someone who was having problems with it and getting tested regularly could do some experiements with it and see if the ebv became lower. I was bummed when my naturopath tested it with art and said it was something that my body didn't agree with. Then again, it's debatable how reliable and functional art testing is. I am assuming it is pretty good.
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)
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.
Too bad nobody is researching the non-ubiquitous EBV Type 2 virus in relation to ME/CFS.
I made an error in the labs I noted, they were not from the pre-ampligen blood but from three months on Ampligen. I found the pre-Ampligen results and they are as follows:
EBV Nuclear Antigen IgG was 154.57 AU/ML
EBV Early Antigen IgG was 36.94 AU/ML
EBV VCA IgG was 127.67 AU/ML
EBV VCA IgM was 6.33 AU/ML
For the first three months, I was on 400mg, the next three, 300mg. I was showing signs of bone marrow suppression so Dr. Klimas dropped me to 200mg for the remaining six months ( I will finish on Oct. 5th). 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).
Great hearing from you!
How are you feeling on the Ampligen?
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