Valcyte so far

[Zapped]

If it wasnt for antivirals i would be on a disability pension. They arent a cure but have kept me more functional .

I have tried traditional stims and the effects were awful and it seems to be the case for the majority of cfsers who try them. I even tried a very low dose reboxetine, a noradrenaline reuptake inhibitor , and had horrible insomnia that sleep mefs couldnt overcome.

I think it was cheney that stated stims and many stimulating antidepressants eventually burn your neurons to dust. Occassional use vs continuous use is probably very different .

So i guess pick your poison which works for you.

I fail to see why you chose to support an antagonistic disparity but since you opined I'll respond to the contents of your proclamation for clarification.

Firstly, I have followed the good (?) Dr. Cheney and his babbling since he left Lake Tahoe. He needed an enema then and more so, now,
this time fill the bag with memory salts along with potions of good science.

Just because you feel better eating Frosted Flakes or taking anti virals, does nothing to substantiate that 'the majority of PWC's' get the same results when they do. Nor have I seen statistics, nor studies, nor anecdotes of the like from the majority. So this claim really amounts to nothing more than hearsay... . Plus, it doesn't describe any sort of methodology.

Further, your results could be from one sector of a non-homogeneous group here that suffers from some unrelated or unknown disease that mimics ME/CFS/SEID, Ie its symptoms - and the list is long. I can unequivocally lay claim that the makeup of these CFS forums consists of people with multiple unrelated illnesses, having attended in person, CFS groups and participating in online research and groups since the very first one, circa 1990, and before.

These 'others' do not exclude convalescents with undiagnosed or unknown illnesses, overlappers, psychiatric cases and just plain malingerers and trolls with nowhere else to get a voice! My experience would venture a guesstimate that of the participants in any of these CFS groups, i.e. those with nebulous etiologies, that the 'real' PWCs would not exceed 70%... .

As for a reubtake inhibitor of adrenaline, it has very different affects than pure ethical amphetimine salts which elevate dopamine, versus inducing a certain nervous condition. May I refer you to CNS Pharmacology... .

Also anecdotally, and in contrast to your officious statement, I started a protocol circa 1990, of Adderall, along with Klonopin, earlier, and added sleep meds (in rotation). I ocasionally stop one or two (different) for a 90-day period to limit dependence. These are doctor(s) written and approved pursuant to my providing justifying research, in way low doses, sub-clinical, taken concurrently with various supplements, along with a Paleo diet. The trick is getting the balance right to reap the benefits while limiting the downside.

While I don't drink, (gave it up 35 years ago) I believe this protocol is analogous to having 1-2 glasses of wine daily, versus a fifth of vodka, which your assumptions imply.

PWCs using anti vitals when I (and some % of 'experts') believe CFS is a stress induced systemic malfunction, is endangering to the kidneys and liver, along with who knows what else (re
'The Clinician's Guide to Virology,) that the makers and prescribers don't even know. Aside from being able to kill you slowly, AV's have been shown to have an immune modulating affects, which is why some people report feeling 'better', which in turn may translate to feeling "up from deathly down.'' (I see I Herxing as medical doublespeak to justify any deviations as to the prescriber's guessing that X-correct dosing will advance his/her efforts.). The rest is 'maybe... .

...Indeed, here's to mud in yer eye!

 

[ladybug64]

Hello all, I just noticed this thread so I'm chiming in late. I see Dr Montoya. His CFS clinic puts everyone with chronically elevated EBV and HHV 6 titers on Valcyte. One 450 mg/ day was quickly upped to 2/ day for me. Improved symptom results were soooo very gradual it was truly a good 7 months before I looked back and realized I had improved energy wise--enough to shower 3 or 4 days/week and do grocery shopping, maybe socialize a little once/week --if I rested for days before and after, lol! I am still constantly exhausted and have to carefully manage effort to avoide the crash, though. After a year the generic Valcyte came out and my insurance would no longer pay for name brand. I noticed a definite decreased benefit on the generic so was upped to 3 generic/ day. After another year they decreased me back to 1/day and instantly I noticed sore throat and swollen glands immediately upon minimal exertion again . It definitely helps a little (I sure wouldn't want to go off of it!)--but I cannot shower everyday or anything even remotely close.

Although I feel some improvement on Valcyte, my EBV and HHV6 titers actually climbed on it. (This is a theme for me, my Mycoplasma titers have also been climbing for years, despite repeatedly treating it). Dr Montoya says the fact that the viral titers are always elevated is more important than the actual #'s though. He has stressed over and over that it is imperative to eliminate the Push/Crash cycle or we cannot get well--much easier said than done when I get anaerobic just showering. (As I'm sure you do also). Dr Montoya is truly a wonderful and caring Doctor who really gets what we go through. I'm so thankful for his help .

I have no terrible stomach side effects on the Valcyte like Minx does. Minx, have you tried George's Aloe Vera Juice daily? It tastes like water, is far superior to any other brand and is soothing to GI tract. I'm so sorry you didn't have more success on Valcyte....can't help but wonder if a longer course could help you since it took so many months for me to feel the difference, though. Keep us posted on your progress

 

[Seanko]

@ladybug64 Thanks for your input and the info on Dr Montoya's clinic and his approach to ME/CFS patients.
Guess what everybody would like to see is more scientific study of the effects of anti-virals on the various sub-groups of patients which are emerging.

If they are effective then they can become part of people's treatment regimes, if not they can be eliminated.

 

[Who Me?]

I was perfectly fine on 450 mgs valcyte. No problems, labs great. I only had major problems when I upped it. This was not just a "tummy' problem that aloe beyond fix. I CHOSE to stop because after 10 months I didn't notice much benefit and the doctor who was monitoring me didn't care. I will be seeing a new ID doc in April so I'm all for trying it again.

As for whatever Zapped was talking about, I have ME so my brain can't understand 1/10 of what was said. what I did manage to read, well it's one persons opinion. I'm not some half-wit being led around by the nose. I do my own investigation, ask questions of people I trust, and base what I take on my labs, which confirm I have acute viruses and infections, and treat accordingly. I do not have some unknown etiology that is being missed. "Hey give doc give me handfuls of acetominephine and don't check my kidney and liver. That'll work!" If something works I stay with it, if it doesn't I move on to the next thing. If it was as easy as finding what works and balancing that, then everyone would be doing it and be "cured".

What people fail to grasp is I'd rather die trying than be a victim to this disease.

@ladybug64 I and many others here have serious cog issues. Trying to read your italics is next to impossible and it messes my brain. Can you please change it back to a normal font?

 

[Zapped]

... I didn't notice much benefit and the doctor who was monitoring me didn't care. I will be seeing a new ID doc in April so I'm all for trying it again.

As for whatever Zapped was talking about,... If something works I stay with it, if it doesn't I move on to the next thing. If it was as easy as finding what works and balancing that, then everyone would be doing it and be "cured".

What people fail to grasp is I'd rather die trying than be a victim to this disease

People, like me, fail to grasp your status because we don't know it unless we ask, or probe. Sometimes we, like you are fogged and miss early posts in a long thread. So we question in the form of alternatives, e.g. 'since your doc didn't care' =? then maybe you weren't getting good data from him? Thus, happenchance, here's an idea... , in case you missed some fine print along the way

IOW, there's more than one way to skin a cat in this game; and for sure there is more than one cat to skin!

This was/is my point: EBV and HHV6 are specific viruses which give symptoms that mimic CFS, but CFS exists without these viruses. So, should one be taking Valcyte for CFS 'cure' w/o evidence they have high titers of these or similar viruses (like CMV, also = HHV5) which do justify its use, then they are 'sss'ing away big dollars and their health.

Some PWC's are doing just that, based on Dr. Montoya's early trials of 80% of 27(?n) people being 'cured' of
what was thought to be causing CFS at the time, which made him quite famous. Later, in larger trials (big N) the results did not pan out. Why? Mostly because N did not have the same mix of specific viruses alleging to cause CFS. Those with the above viruses may have gotten some relief; but the PWC's w/o viruses susceptible to relief from Valcyte 'flunked the test.'

Making things more complicated but emphasizing the conundrum of 'how to treat' is that one can have CFS AND high titers of these viruses. So, treating them does not necessarily treat/cure CFS... .

I hope this is clear and explains that I and others who have been around are not aware of the degree or level of information any other forum member has accessed. A few posts can't cover the plethora of
details a fellow member has experienced.

If querries don't give you alternatives to consider then maybe they help others... .

 

[Who Me?]

I read your post and understood your point. What you fail to grasp is that I don't care what you say and am not interested in having a prolonged conversation about it. I don't sit around dissecting who said what and oh I may treat this virus or infection but still have ME.

It's very simple for me. I take something and I feel better (relative to me) I stay on it. I feel worse or no result after a reasonable test I move on. You can wait until you're totally bedbound and completely non functional before you do something. I won't

No where did I say treating viruses or infections would cure ME. I'm treating what is there.

Fyi I am positive IgM for CMV and hhv 6.

 

[Zapped]

I read your post and understood your point. What you fail to grasp is that I don't care what you say and am not interested in having a prolonged conversation about it. I don't sit around dissecting who said what and oh I may treat this virus or infection but still have ME.

It's very simple for me. I take something and I feel better (relative to me) I stay on it. I feel worse or no result after a reasonable test I move on. You can wait until you're totally bedbound and completely non functional before you do something. I won't

No where did I say treating viruses or infections would cure ME. I'm treating what is there.

Fyi I am positive IgM for CMV and hhv 6.

I fail to understand (completely) your hostility, but have it your way... . ['Anyway you want it...' ❡]

FWIW, I'm neither CMV nor HHV6 and my CFS symptom baseline is 7-8 (10, worst). This is why I (and others) likely
had some really bad experience on Valcycte - but I tried it, nonetheless, because the then research made sense to me.

As for sitting on my ass and gving up, not a chance. This is why I look for tidbits (that make sense) wherever they may be found... even from frumpy sources,~) ...I'd eat a live porcupine if I found evidence there was a chance it would help (but not on someone else's whim)!

...I guess a 10k is out of the question? =()

 

[Who Me?]

I feel like you keep asking me the same thing over and over, rewording each time and talking to me like I'm the village idiot and don't understand what your saying. That's where my hostility is coming from.

I don't do anything on a whim, I don't know where you got that. If you don't have viruses then it makes no sense to take antivirals. I have them, many. And infections. So I treat those and hope I feel better. I'm not looking for a cure or remission, only to not get worse. If I find some labs that are hugely off, then I tackle whatever they indicate.

If your baseline is 7, then you are very lucky and now is the time to get cracking! Until you can no longer drive or don't talk to another human being for weeks because you can't walk out the front door or talk on the phone then it makes sense you can't understand why I would do whatever I can. And that would include eating live porcupine, if there was enough anecdotal evidence that it was helpful, not because some person on Yahoo asks suggests it.

 

[Zapped]

I feel like you keep asking me the same thing over and over, rewording each time and talking to me like I'm the village idiot and don't understand what your saying. That's where my hostility is coming from it.

'What we have here is a failure to communicate!'

Your observation is so way off my original and subsequent intended communication that I don't know where to begin to unravel it.

This is a first for me ... . Maybe it's my dry wit or tongue-in-cheek attempts at humor.

Let's just say I was trying to be friendly and helpful and somehow it got spelled hgrnoupz. No offense was ever intended.

I'll henceforth refrain from commenting to you or about your posts.

Ciao.

 

[loki]

I feel like you keep asking me the same thing over and over, rewording each time and talking to me like I'm the village idiot and don't understand what your saying. That's where my hostility is coming from.

I don't do anything on a whim, I don't know where you got that. If you don't have viruses then it makes no sense to take antivirals. I have them, many. And infections. So I treat those and hope I feel better. I'm not looking for a cure or remission, only to not get worse. If I find some labs that are hugely off, then I tackle whatever they indicate.

If your baseline is 7, then you are very lucky and now is the time to get cracking! Until you can no longer drive or don't talk to another human being for weeks because you can't walk out the front door or talk on the phone then it makes sense you can't understand why I would do whatever I can. And that would include eating live porcupine, if there was enough anecdotal evidence that it was helpful, not because some person on Yahoo asks suggests it.

I'm in the same boat. I know that there are ways to make our (different) situations better, but they are hidden and not easy to find. Often it's a try and error principe of learning. Hard but true. It seems like a puzzle and finding out the pieces that fit in is the way to go, unfortunately the people that know anything about this "disease(s)" are hard to find... just my two cents

 

[loki]

'What we have here is a failure to communicate!'

Your observation is so way off my original and subsequent intended communication that I don't know where to begin to unravel it.

This is a first for me ... . Maybe it's my dry wit or tongue-in-cheek attempts at humor.

Let's just say I was trying to be friendly and helpful and somehow it got spelled hgrnoupz. No offense was ever intended.

I'll henceforth refrain from commenting to you or about your posts.

Ciao.

i just think you both have two different perceptions due to your different (i guess) illnesses that affect the brain...

 

[Zapped]

@loki
Ich denke die anderer (Frau) ist sehr krank. Verstehen Sie?

 

[loki]

ja, das verstehe ich es ist wirklich traurig ich würde gern helfen.

 

[Zapped]

Richtig. Meine Deutche is sehr alt, auf viele jaren alt,)

Ich habe einege zeiten nach Deutchland gefahrt.

 

[loki]

Du hast einige Zeit in Deutschland gelebt oder du bist für einige Zeit nach Deutschland gefahren?

 

[Zapped]

Du hast einige Zeit in Deutschland gelebt oder du bist für einige Zeit nach Deutschland gefahren?

Nein, nicht gelebt, nur einege woche in drei fahren..
Entschuldigen Mein Deutch, bitte, deutch auf viele jaren heir, auf universitat gelernt. Und Ihnen? Ihren
English is sehr gut. Ich kann nur einen kleinen erreinen. (Dinesen damn computer! Es machts English
Nur, Anderen macht ich. )

 

[loki]

Your German is quite funny to read i like the english language more than german! Because it's grammar is simple, the language is powerful and easy to understand/write and many many people around the globe speak it! Many many articles on the internet about my disease are written in english! And only in english. There are no german articles, or french or whatever. English is the language to go and i stay with it in my search for a cure or at least a better me.

 

[Zapped]

I completely understand. It's fun trying long forgotten vocabulary and grammar. You should see some of the meals I ordered in
Germany,~)

 

[Zapped]

Originally, I learned hoch deutch but after so many years it has gotten very LOW;-)

Better go now. Nice chat and visiting with you. Later.

 

[loki]

hehe, your memory seems to work
that's a good sign

my brain feels fried since interferon and i was able to speak arabic, german, english, french and a bit latin. Now it's like a big pan where everything is thrown in and stirred for some hours with a mixer....