Positive valcyte experiences

[vli]

The bond uni study on nk dysfunction showed nk function is low in cfs/me but the level of nk dysfunction doesnt seem to correlate with level of severity. ie the lower the nk dysfunction the worse the person is doesnt correlate. This seems to be the same with viral titres for some reason??

I have personal experience of this w regard to titres, but is what u said about how "low nk function does NOT necessarily equal severe cfs" really true??? My nk cell function before Amp was 4 in a range of 8-170, 22 after 6 mos on amp. Do u hv any links for this?? I'm not doubting u just can't find anything online that says what u said.

 

[AFCFS]

vli,
I'm sorry you didn't benefit from Ampligen. I think the best thing to do is to put aside more expensive drug treatments and try and restore relations with your family.

I would agree with this aspect since your family seems to care about you, and you seem to care about them. Ampligen and anti-viral meds may work for others, but apparently it did not work wonders for you. You could try less expensive routes, and may achieve better effect. In any event, while you continue to plod on through the illness, it always helps to have a supportive family network.

 

[heapsreal]

I have personal experience of this w regard to titres, but is what u said about how "low nk function does NOT necessarily equal severe cfs" really true??? My nk cell function before Amp was 4 in a range of 8-170, 22 after 6 mos on amp. Do u hv any links for this?? I'm not doubting u just can't find anything online that says what u said.

Give me time to try and find the link. but from my experience in the nk cfs study, my nk function was much lower then many but some with higher nk function but still in low range were sikcer then me, but i was also on antivirals then too. What im saying is low nk function is a good diagnostic marker (now) for cfs but it doesnt really tell one the severity of cfs/me, if that makes sense. Its just like some are alot sicker with lower viral titres then those with higher viral titres, i think they can be a marker for cfs etc but just not a good indication of severity?? if that makes sense

 

[vli]

yes it does.

 

[HTree]

Hi,
My two cents is: Famvir and Valtrex are cheap, and prescribed ALL the time for people with cold sores and shingles etc....E.g. it is relatively safe. (I have a friend with HSV 1 oral herpes, and she is constantly on Avs for it, for the past decade plus, with no troubles).
AVs do not seem to be a cure for ME/CFS, I agree, but I have at least one friend in person, and several on-line friends who've absolutely improved their condition with it
(the in-the-flesh friend improved much on Valcyte long term).

If you have the high IgG titres, I think worth a shot... Again, mainly because I believe they are low-risk and inexpensive, and seem to have helped a handful of people I know.
This was my decision making process, Oh yes, and my ME/CFS doctor suggested I try it.

I certainly understand the need to be skeptical (and angry!). I think that is smart and necessary to survive this (well, the skeptical part, perhaps no the anger!)
However, in case of these Avs, given the stakes are much lower with AVs, and they are so commonly used/easy to get a script (here in U.S. anyway), I say go for it.

Just remember: long-term use is key (minimum 6 mo, and up to year/years)

Good luck
HTree

 

[BBB]

Sorry if this seems lazy, but I really do need to collect a number of positive experiences in a rather short space of time. I am in week 40 of Ampligen and long story short, will be stopping either after another two months or after 3 infusions depending on how I feel in the coming week. I knew there was a larger chance than not that ampligen would not "cure" me, but I am devastated by the little progress i have made in these 40 weeks (perhaps an increase of 10 on the Karnofsky scale). I really need some positive reports of valcyte working or helping ppl because i've wasted an unbelievable amount of money that was my parents' by coming here (from Hong Kong) and pursuing Amp., and due to this they are grilling me about what I'm going to do when I go back to HK. I know undcvr, SOC and heapsreal have all posted lots abt how valcyte helped them, but if anyone else who has positive experiences can post them too, I'd be super grateful. I am completely clueless about what to do now and I owe my parents an enormous debt as well as an answer to their question of what I plan to do next about my illness.

Thank you so much.

Hi
My son age 23 just returned from his doctor, John Chia, (1-310-784-5880) an infectious disease doctor in LA, who thinks Ampligen is ineffective. He says he has 4 patients who did not benefit from it. Regarding valtrex, my son almost died on Valtrex given by another doctor. Dr. Chia believes in testing for the actual virus you have and treating that virus. His research is with entero viruses but is familiar with all. He uses interferon, immunoglobulin, anti-virals and herbs. He experiments with them. You might look him up.He is a very nice man and his rates are reasonable and he will do telephone consultations.

 

[BBB]

Hi
My son age 23 just returned from his doctor, John Chia, (1-310-784-5880) an infectious disease doctor in LA, who thinks Ampligen is ineffective. He says he has 4 patients who did not benefit from it. Regarding valtrex, my son almost died on Valtrex given by another doctor. Dr. Chia believes in testing for the actual virus you have and treating that virus. His research is with entero viruses but is familiar with all. He uses interferon, immunoglobulin, anti-virals and herbs. He experiments with them. You might look him up.He is a very nice man and his rates are reasonable and he will do telephone consultations.

P.S I have a lot more information, if you need it. Dr. Chia is Chinese, trained at UCLA. I don't know which languages he speaks.

 

[SOC]

Maybe this conversation needs some clarification.

Is there concrete scientific evidence that antivirals cure ME/CFS? Not yet, maybe never.

Is there concrete scientific evidence that antivirals reduce the symptoms of EBV, CMV, HHV-6? Absolutely. Lots of it. It is done on immune impaired patients -- those with HIV, transplant, and known genetic immune disorders. The evidence is that the medications work. They're FDA approved for herpesvirus infections. That's well established.

So, if a PWME has a chronic herpesvirus infection, are they are likely to benefit from antiherpetics? Most likely. Just like a transplant patient who develops herpesvirus infections will benefit from antiherpetics.

Will antiherpetics cure all ME/CFS symptoms? Maybe not. PWME may have other symptoms that are not the result of herpesvirus infections. Those symptoms will need other, or additional, treatments. Or they may not be currently treatable.

Should every ME/CFS patient take Valcyte or Ampligen or pick-your-treatment? No. We should be taking the treatments the work on the symptoms we have. I don't have gut symptoms and I don't take any of the various gut treatments, for example. The best way to get the best treatment for your own set of symptoms is to connect with one of the top-notch ME/CFS docs who does a lot of testing and has a lot of treatment options available. And do your own research. Compare your symptoms and test results with available treatments, then discuss them with a knowledgeable doctor.

I think it's idiotic to say that since there's no perfect cure for our illness, we should allow treatable infections to run rampant in our bodies. It's equally idiotic to suggest that we don't use any treatments that improve symptoms just because they aren't a cure for the illness. I'm certainly not going to sit around miserable with treatable ME/CFS symptoms just because there's not yet an established cure for ME/CFS. I'm going to do the very best I can to give myself and my daughter the best quality of life we can have with this illness.

 

[vli]

I think it's idiotic to say that since there's no perfect cure for our illness, we should allow treatable infections to run rampant in our bodies. It's equally idiotic to suggest that we don't use any treatments that improve symptoms just because they aren't a cure for the illness. I'm certainly not going to sit around miserable with treatable ME/CFS symptoms just because there's not yet an established cure for ME/CFS. I'm going to do the very best I can to give myself and my daughter the best quality of life we can have with this illness.

AMEN!!!!!!!

 

[Undisclosed]

Moderator Note:

Can I point out here that this thread was started to ask about positive experiences with Valcyte. I suppose any negative experiences with Valcyte are also important because that can be helpful in determining treatment decisions. General opinions about Valcyte, if one has not gone down this treatment road, are not helpful to this thread and should be avoided.

So let's help vli out by providing some positive experiences with Valcyte which is what was requested.

Thank you.

 

[CBS]

Hi Kina,

I think you might have meant Valcyte, not Ampligen and yes, negative experiences are important. Clearly, Valcyte is not universally effective in all patients. Also, Dr. Montoya himself has not made the claim that the antiviral action of Valcyte is necessarily the reason for it's success in the sub-group that does respond to it (and yes to the comments of others who have pointed out that Dr. Montoya is far from the only infectious disease doc having success with some patients on Valcyte).

 

[Undisclosed]

Hi Kina,

I think you might have meant Valcyte, not Ampligen and yes, negative experiences are important. Clearly, Valcyte is not universally effective in all patients. Also, Dr. Montoya himself has not made the claim that the antiviral action of Valcyte is necessarily the reason for it's success in the sub-group that does respond to it (and yes to the comments of others who have pointed out that Dr. Montoya is far from the only infectious disease doc having success with some patients on Valcyte).

Yes I did mean Valcyte, I changed it while you were writing your post. I was just reading about Ampligen and had that in my brain when I was writing the post. I realized that and changed my post. This what you get when you are sleep deprived.

I agree. It is clear that valcyte is not universally effective in all patients. The fact that it is obviously effective for some is very important.

 

[MishMash]

Moderator Note:

Can I point out here that this thread was started to ask about positive experiences with Valcyte. I suppose any negative experiences with Valcyte are also important because that can be helpful in determining treatment decisions. General opinions about Valcyte, if one has not gone down this treatment road, are not helpful to this thread and should be avoided.

So let's help vli out by providing some positive experiences with Valcyte which is what was requested.

Thank you.

Yes, of course. But if somebody posts that they a) they have wiped out their family's finances on a previous unproven drug, that continues to enjoy urban legend popularity, and have suffered family alienation as a result, and b) asks for "positive" outcomes for another drug, whose promoter has yet to even show the world his specific data, then my instinct is to suggest that person should probably wait.

To spend $20,000 or $40,000 for a drug, for condition that "might" have you as a sub-group is not smart if you are already broke. I find it strange that my detractors never seem to consider the financial implications of all these treatments. I consider that a little callus , in that most people on this forum are not people of means. In fact, many are desperate and damn near indigent.

And there are, in fact, real drugs coming out on the market soon for neurological conditions, that have actually been proven in double-blind testing, to be clearly beneficial for neurimmmune illness. Ihave posted about them several times. In fact, Dr. Van Konenberg responded positively to my posts. My advice for vli was to wait for these new drugs. But this seemed to engender a great deal of anger, and frankly it's not worth it.

 

[Undisclosed]

Yes, of course. But if somebody posts that they a) they have wiped out their family's finances on a previous unproven drug, that continues to enjoy urban legend popularity, and have suffered family alienation as a result, and b) asks for "positive" outcomes for another drug, whose promoter has yet to even show the world his specific data, then my instinct is to suggest that person should probably wait.

To spend $20,000 or $40,000 for a drug, for condition that "might" have you as a sub-group is not smart if you are already broke. I find it strange that my detractors never seem to consider the financial implications of all these treatments. I consider that a little callus , in that most people on this forum are not people of means. In fact, many are desperate and damn near indigent.

And there are, in fact, real drugs coming out on the market soon for neurological conditions, that have actually been proven in double-blind testing, to be clearly beneficial for neurimmmune illness. Ihave posted about them several times. In fact, Dr. Van Konenberg responded positively to my posts. My advice for vli was to wait for these new drugs. But this seemed to engender a great deal of anger, and frankly it's not worth it.

Hi MishMash, since you have decided to respond to my post, I feel that I should respond back.

Didn't you also say:

I actually have no personal objection to any member of this forum trying any treatment. In fact, it is none of my business which drugs or treatments another person tries.

It seems you do have a personal objection to members trying a treatment.

If you want to discuss money, drugs, research/lack of research, why not start a thread so you can discuss that and leave this thread for members to add any positive effects that they have or have not had from trying Valcyte.

I don't think what you said engendered some 'anger' but how you said it was the problem.

 

[snowathlete]

Regarding valtrex, my son almost died on Valtrex given by another doctor.

If you dont mind me asking: what happened - how did he almost die? I'm interested because I might take it at some point in the next 6-9 months, so I'm interested in hearing people's experiences, even negative ones.

 

[Sushi]

Yes, of course. But if somebody posts that they a) they have wiped out their family's finances on a previous unproven drug, that continues to enjoy urban legend popularity, and have suffered family alienation as a result, and b) asks for "positive" outcomes for another drug, whose promoter has yet to even show the world his specific data, then my instinct is to suggest that person should probably wait.

To spend $20,000 or $40,000 for a drug, for condition that "might" have you as a sub-group is not smart if you are already broke. I find it strange that my detractors never seem to consider the financial implications of all these treatments. I consider that a little callus , in that most people on this forum are not people of means. In fact, many are desperate and damn near indigent.

And there are, in fact, real drugs coming out on the market soon for neurological conditions, that have actually been proven in double-blind testing, to be clearly beneficial for neurimmmune illness. Ihave posted about them several times. In fact, Dr. Van Konenberg responded positively to my posts. My advice for vli was to wait for these new drugs. But this seemed to engender a great deal of anger, and frankly it's not worth it.

No one (in this thread) reported that they had "wiped out their family's finances," or that they were "broke"-- simply and obviously that these medications cost a lot of money and, in this particular case, the first drug tried had been minimally effective, so the patient was considering another medication (yes, costly) that had considerably helped a subset of patients.

You also don't know (as it wasn't stated) whether or not this patient's tests showed whether or not they were in a subset that was likely to respond to either of the drugs mentioned. So the level of "gambling on a treatment" is also not known.

I think the "objections" are to the "blanket statements" about medications that have clearly helped a subset of patients. VLI is looking for positive outcomes in other patients that will shed more light on a personal decision. Not everyone wishes to wait for future treatments which may be years in coming (you mentioned neurological but VLI is asking for input on an anti-viral) and each patient's situation is unique.

Sushi

 

[MishMash]

Kina

This was my last statement in this thread about the use of Valcyte. To me, it doesn't appear to be flaming or trolling. I'm not certain of the need for name-calling.

VLI reported back on the failure of Ampligen to improve her condition. This treatment is incredibly expense. Likewise, any info on Valcyte would also benefit the patient population. The more patients who report back the better.

However, the final decision is yours. If you decide to take (and pay for) Valcyte, I completely respect your decision. If you do decide to take Valcyte, would you mind coming back to the PR forum and tell us what your experiences were?

For example, did you get a result? Were you improved 20%, 40%, 60%, etc. Also how long did the effects last for? Months, years, forever? And I would be interested in how much you spent, including all parts of the treatment?

 

[heapsreal]

There is a good list of people who have improved with antivirals. It comes down to getting the right testing and being in the correct subset of cfs/me people with herpes viruses. ALso important to test for bacterial co-infections as this can hamper improvement with antivirals. It seems that if one has good health insurance then valcyte isnt as expensive for some people. its kept many of us contributing to society and off social security. Antiviral treatment needs to be more wide spread and accepted as i think the long term cost benefits greatly out weigh the short term financial cost. This could also possibly stimulate research into sub groups of cfs/me outside of this antiviral group and maybe help others??

 

[jane52]

Sorry if this seems lazy, but I really do need to collect a number of positive experiences in a rather short space of time. I am in week 40 of Ampligen and long story short, will be stopping either after another two months or after 3 infusions depending on how I feel in the coming week. I knew there was a larger chance than not that ampligen would not "cure" me, but I am devastated by the little progress i have made in these 40 weeks (perhaps an increase of 10 on the Karnofsky scale). I really need some positive reports of valcyte working or helping ppl because i've wasted an unbelievable amount of money that was my parents' by coming here (from Hong Kong) and pursuing Amp., and due to this they are grilling me about what I'm going to do when I go back to HK. I know undcvr, SOC and heapsreal have all posted lots abt how valcyte helped them, but if anyone else who has positive experiences can post them too, I'd be super grateful. I am completely clueless about what to do now and I owe my parents an enormous debt as well as an answer to their question of what I plan to do next about my illness.

Thank you so much.

I took Valcyte for a year. I had active EBV, CMV & HHV6 along with immune dysfunction. My doctor says he;s seen it work 70% of the time. I saw a man who had been bedridden and was looking healthy. I did not have a great result, but it did bring my EBV levels all the way down! I am glad I tried it and would encourage anyone else to do so. As I understand it I am in a smaller percentage group that failed. I also took Zithromax 250mg per day for the entire year to reduce inflamation and it really helped. Valcyte was I pill two times a day. 450mg, 12 hours apart. I had labs done once a week to check liver and kidney function. It's necessary to drink at least 64 oz. of water also. I could also mention that I got help from the Chronic Disease Foundation to pay for it. Best of luck and if I can answer any questions I'll be happy to.

 

[heapsreal]

Did valcyte not lower cmv or hhv6??
Have u had any nk function testing done?
I suppose if u had any bacterial co-infections then azithro would have nailed that??
How long since u finished, i ask this as i do remember reading where some people didnt start making good improvement until they were off val.
Do u have any plans on how u are going to attack this illness now??
Maybe u could be a ritux or ampligen responder, would be nice if it was alot more affordable.