Valcyte + Famvir Success with only mildly elevated titers

[mojoey]

I was wondering if anyone has done considerably well on either of these AVs with mildly elevated titers. My highest HHV6 titer was 1:160 IGG, and my most recent test with focus labs showed only 1:80 for both HHV6 and EBV. In other words, both viruses have always been elevated, but nothing near what would be considered a surefire active infection by HHV-6 foundation, Montoya, others. Dr. Levine never suggested amantadine to me, but did suggest nexavir. Dr. Enlander also suggested kutapressin, but never any AVs. Peterson also suggested ampligen, and never any AVs. Dr. Chia put me on oxymatrine but equally as much for my low-level enteroviral infection as for shifting my immune system to th1 dominance (6 months on this didn't help at all).

So I would like to know if anyone else is in the same boat: tons of chronic infections but no dominant bug as far as quantiative measures are concerned, and still managed to find significant benefits from valcyte or famvir.

Thanks!
joey

 

[heapsreal]

Famvir has been good for me with ebv and cmv. This year though has been crappy and i was going backwards but my lymphocyte tests my doc uses to check ebv/cmv were good, something else must have been making me ill, then my other gp i see picked up that i had a sinus infection due to my newer symptoms and also that the rest of my family have been sick with similar infections. Antibiotics have been working well on this sinus infection and im starting to feel alot better. Beofre finding out about this sinus infection i was thinking that the antivirals werent working, they have its just that i picked up another bug. Its hard to tell sometimes if its a cfs 'crash' or a new infection. But i would say famvir has been very helpful and it has helped a few others too.

cheers!!!

 

[Tony Mach]

Both EBV and HHV-6 virus are composed from different viral-proteins (different "parts" of the virus). One IgG test measures against one viral protein (it measures only the presence of the specific IgG antigen against a certain "part"). Measuring against only one protein-IgG is usually useless to judge if there is active infection (For EBV you need to test at least EEA-IgG and VCA-IgG, maybe even EBNA-IgG).

Furthermore, Montoya tests for HHV-6 not only by IgG, but by PCR as well. He considers it a positive with a HHV-6 copy-count of bigger than 10^5 to 10^6 (100.000 to 1.000.000).

I know that Montoya (and other doctors) report success in some with Herpes-Antivirals. And I know one blog vlgonvalcyte.wordpress.com from one mother about her and I think her daughter, who have success with this.

But from what I read about the larger Montoya study, it does work only in a small subset of people with CFS. If you have access to it and it works for you: good! Continue it! And share your experience! Since when do you take it? What does it do for you?

Personally, if I had access to Ampligen, that would be the first thing I would try.

I'm currently tying Equilibrant myself, but I fear it doesn't work for my CFS (but it clears up my sinusitis and got me rid of my hay-fever!).

 

[mojoey]

Hi tony,

I apologize for not being totally clear with my first email. I didnt lay out all the details but now thatyou mention, i was positive for all those EBV antibodies, including early antigen. HHV-6 has always been IGG pos. My onset was EBV.

So to rephrase: i would like to know if anyone with positive but low-level positive titers, including IgM and EA, responded particularly well to these AVs.

I'm glad the equilibrant helped your hay fever! That's what it's supposed to do right? Shift away from Th2 overreactivity?

 

[mojoey]

Tony,

Speaking of ampligen, i found the following post in a MS forum. Too bad I don't know which doctor it is:

Ampligen helps a subset of patients with CFS/HHV-6 but those with higher virus titers need valcyte. That is the way my ID explained it to me. He said it has promise for those with active HHV-6 but low level active. After explaining that he told me that he thinks ampligen is useless for those with MS HHV-6 because our infection is in the central nervous system. He recommends stronger antivirals for MS with active HHV-6 ie valcyte or foscarnet.

http://www.msdiagnosed.net/forum/viewtopic.php?p=15386&sid=d4e83b54c18f5191f79ed0ebc4f62186

I've found several references to Dr Ablashi of hhv6 foundation recommending ampligen for HHV6a. I'm guessing mainly based off that '95 study that showed ampligen stops hhv6A dead in its tracks in vitro at 100 or 200pg/ml. More interestingly, the study found that after the amp was taken away, the hhv6 came back but in less quantities than before. That might very well explain why some relapse right after the drug is taken away and others get a few good years, only to relapse again after pushing themselves.

 

[aquariusgirl]

Thank you for this thread. I did not appreciate the txt implications of having low. vs high HHV6 titers.
Joey- you must have quite the collection of lab reports.
When my mom saw my file recently, she asked if I was going to get it published!
gotta laugh, right?

 

[redo]

So I would like to know if anyone else is in the same boat: tons of chronic infections but no dominant bug as far as quantiative measures are concerned, and still managed to find significant benefits from valcyte or famvir.

Interesting. I got hung up on the conclusions part here:
http://youtu.be/Riybtt6SChU?t=33m29s
As you can hear Montoya assumes that it's effects in the immune system which makes the Valcyte work. Earlier in the video he talks about how it most often work on those with high titers, but it's not necessarily always the case. It may work on people whom got low titers, and it may not work on people with high titers.

 

[mojoey]

Hey redo,

Yeah that's the general gist I got. But as my focus tends to be with these things, I'm far more interested in hearing from similar patients themselves rather than from doctors describing their own clinical trials or even the results of their clinical trials. Bias about these things seems to be rampant, whether the therapy is stem cells, gcmaf, ampligen, antivirals, or (just for fun) Tietelbaum's fizzy drink.

I have heard from one patient that had similar titers as me, and although she responded she responded far less than dramatically than a close relative that had the high titers.

 

[soxfan]

I am in the same position. My titers are not considered high enough for treatment (Dr. Montoya's criteria) but they are somewhat elevated. I was given Valcyte but only took it for 11 days as it caused tremendous fatigue/exhaustion. I was actually confined to bed from the 6th day on. I quit because I wasn't sure if it was a side effect or reaction as I was only on 450mg and trying to go up in dosage.
I was told my virus's are "somewhat" active...whatever that means. I was just recently tested again and the most recent EBV test was totally different than the one I had only 4 months ago so I am totally confused as what to do. In between the two tests I was on Nexavir for 2 months but had no reduction in symptoms.

My titer was 1:640 for EBV and 1:160 for HHV6...IgG both. On one test my EA was 1:40 and the other one totally negative.

 

[floydguy]

Good topic. I am also in the same boat with elevated but not super elevated levels of EBV, HHV-6 and Coxsackie. I've not been able to convince anyone to prescribe even Famvir much less Valcyte. Was interested in recent discussion on HSV infection of the nervous system. This seems like a possibility for me.

 

[mojoey]

Hi soxfan,

have you tried famvir? If I had those titers for EBV (which I don't) and those titers for HHV-6 (which I do) I would definitely take famvir which seems to be effective enough for EBV. It's the HHV-6 which seems to require more potent antivirals

I am in the same position. My titers are not considered high enough for treatment (Dr. Montoya's criteria) but they are somewhat elevated. I was given Valcyte but only took it for 11 days as it caused tremendous fatigue/exhaustion. I was actually confined to bed from the 6th day on. I quit because I wasn't sure if it was a side effect or reaction as I was only on 450mg and trying to go up in dosage.
I was told my virus's are "somewhat" active...whatever that means. I was just recently tested again and the most recent EBV test was totally different than the one I had only 4 months ago so I am totally confused as what to do. In between the two tests I was on Nexavir for 2 months but had no reduction in symptoms.

My titer was 1:640 for EBV and 1:160 for HHV6...IgG both. On one test my EA was 1:40 and the other one totally negative.

 

[soxfan]

I have not tried Famvir...Valcyte is the first anti-viral I have tried if you can call 450mg a try. The doctor seems to think the HHV6 is not active but the EBV is slightly so that is why I am thinking about Valtrex.
The reason I am so hesitant is because I read that if you have elevated EBNA and elevated EBV IgG then it means past infection and not reactivation. Also the second EBV testing I had showed no EA which is another concern for me..The doctor considered the test negative since I had no EA or IgM showing just the EBNA and IgG. So very confusing to me.

 

[mojoey]

I would really go hard for famvir. It's the happy medium between valtrex and valcyte. Valtrex won't touch HHV-6 at all, which is risky if you happen to have a low level infection, whereas Famvir does, at least anecdotally. My impression is that valtrex is really on the weak side and used as either an adjunct to one of the other antivirals or for maintenance. It didn't do a thing for me.

 

[soxfan]

I have Famvir written down in my little note book. I will definately be asking the doctor about it. I really don't have the symptoms of either virus so I am not sure they are reactivated. I am not exactly sure what is wrong with me at this point. I am willing to give Famvir or Valtrex a try but don't think I will be taking the Valcyte again...Thanks for the information because I am so unsure about all of this.

 

[SOC]

I think an important issue -- and one that most doctors don't realize -- is that a CNS HHV-6 infection is difficult (if not impossible) to detect with standard methods AND that most AVs can't cross the brain-blood barrier to get at a CNS infection.

PCR DNA tests can detect HHV-6 in the serum during primary roseola infections and in acute transplant reactivations, but they cannot determine reliably if a patient has a chronic central nervous system (CNS) infection that has reactivated , because there is so little virus circulating outside of the tissues.

http://www.hhv-6foundation.org/research/hhv-6-testing

It pays to read extensively at the HHV-6 Foundation website.

I couldn't guess at how many of us have HHV-6 infections in the CNS, but I bet it's a lot more of us than are diagnosed because of misconceptions about the accuracy of HHV-6 tests.

If something is affecting our immune systems so that we are not able to adequately suppress normally latent herpesvirus infections, those infections can have had years to work their way into all kinds of tissues that doctors ordinarily don't see in primary herpesvirus infections. HHV-6, for example, is known to be highly neurotropic, but human immune systems usually push it into latency before it becomes an issue. See where I'm going with this?

 

[aquariusgirl]

so valcyte won't touch a HHV6 infection in the CNS? What does Lerner say about this?

 

[SOC]

so valcyte won't touch a HHV6 infection in the CNS? What does Lerner say about this?

I think that Valcyte is one of the few (maybe the only) one that crosses the BBB at all, but that's just my memory and could be wrong. Seems that it doesn't do it in large amounts, either, so you need fairly high doses to get enough into the CNS. Don't take my word for it, though.

In my particular case, I saw the most cognitive improvement when I was taking my whole daily dose at one time "for better tissue perfusion". Daughter had a similar result. We didn't do that until we'd been on daily divided dose for a year or so, though.

Given how many people have trouble with Valcyte, much less high one-time doses, I wouldn't want to try one time daily dosing right away. This is a med that really needs a knowledgeable doc managing it for each individual's unique situation.

I don't speak for Dr L, so I don't know exactly what his take on it is.

 

[soxfan]

What symptoms are caused by an HHV6 infection in the CNS? I have read alot on the HHV6 foundation sight and have found it very beneficial and informative...

 

[Grape Funk]

Good topic. I am also in the same boat with elevated but not super elevated levels of EBV, HHV-6 and Coxsackie. I've not been able to convince anyone to prescribe even Famvir much less Valcyte. Was interested in recent discussion on HSV infection of the nervous system. This seems like a possibility for me.

Hey floyd, where did you see the HSV infection of the nervous system?

I am also thinking about trying valcyte in a couple of months, and i do not have high hhv6 titers 1:80(only tested once when not in relapse). Though i do want to say something about the tests. I have been negative to IgM EBV titers, but when i was in a relapse (a month or two of straight flu like/crash/PEM symptoms) IgM was elevated for MONTHS after the extreme PEM went away. The IgG Ebna, Vca, has been positive constantly around 4.00 or >5.00 for the duration of the disease. So, I'm thinking HHv6 could work in a similar way, especially with the non adequate measuring methods out right now.

P.S. Anybody want to test HHv6 levels, run a couple miles a day for a week, then test again to see if my theory is true?!?

 

[heapsreal]

I think that Valcyte is one of the few (maybe the only) one that crosses the BBB at all, but that's just my memory and could be wrong. Seems that it doesn't do it in large amounts, either, so you need fairly high doses to get enough into the CNS. Don't take my word for it, though.

In my particular case, I saw the most cognitive improvement when I was taking my whole daily dose at one time "for better tissue perfusion". Daughter had a similar result. We didn't do that until we'd been on daily divided dose for a year or so, though.

Given how many people have trouble with Valcyte, much less high one-time doses, I wouldn't want to try one time daily dosing right away. This is a med that really needs a knowledgeable doc managing it for each individual's unique situation.

I don't speak for Dr L, so I don't know exactly what his take on it is.

I was under the impression that these viruses have to entre the general circulation to replicate etc so even if the av's dont cross the blood brain barrier, eventually the av's get them when they try to replicate by going into the general circulation. This helps lower the viral load and also is why people have to be on av's for so long, but im not 100% on this.

cheers!!!