One month into Valtrex, starting out on Valcyte

[ukxmrv]

No worries Matt,

I had severe photo-phobia for the first 10 years of this disease. They were posts to a general CFS treatment group and not one dedicated to his ideas.

I started on 100mg of Celebrex and am now on 200mg once a day. This has been intermittent as I need to buy the drug and I don't have the money.

Roughly I would guess I have had 6 months on the low dose and 6 months on the higher one now.

 

[Matt_C]

Interesting. Do you recall the group? Do you know if it was before he started sarcinfo.org? I would guess he was posting in the CFS group around the same time. I'm interested to see his posts. To be honest, i'm somewhat disillusioned with the whole approach Marshall and his team of volunteers take to developing their science and especially to helping patients doing the protocol. The MP did help me significantly, yet here I am. I plan to resume it at some stage regardless of the outcome from my antiviral/celebrex experiment.

I'm starting on Celebrex 200mg per day in divided doses, 100mg every twelve hours. This was my decision, i'm not sure if i'm better off taking it in a single dose. I'm encouraged to hear you have had some improvement on it @ukxmrv. I plan to take higher doses than 200mg and will most likely move up to 400mg per day soon. I'm lucky with this drug as it's available cheaply to me here in Australia. Not so lucky with the antivirals though, they are costing me an arm and a leg.

I'm very much a guinea pig with the antiviral doses i'm taking, i'm not sure how I will fare on it but theoretically it should work better than the lower doses used by Pridgen and co.

I was feeling pretty good yesterday for the first time in a couple of weeks and went to the beach swimming with friends, but today i've woken up with some problematic fatigue in my brain. I feel very tired and zapped of energy.

 

[Matt_C]

@ukxmrv - what is your diagnosis? Do you have a thread with this info? I can't seem to find it if you do

 

[ukxmrv]

No I don't have a thread sorry Matt.

I am a ME patient who was diagnosed in the 1980's and was able to see some original UK ME doctors. Acute viral onset. Tested positive to different things (viruses etc) over the decades as fashions and tests have come and gone.

Run out of money.

My guess would be that he posted to the CFSFMExperimental Yahoo group or an earlier one before that before it was created? From memory there was a lot of argument on his early posts and they were removed. Someone also claimed that there were threats of legal action and then things clammed up.

I do best if I take my celebrex and my antiviral at night and at one dose. This could be because I've never been able to afford larger doses. As an example when I took Valtrex at 500mg twice a day my symptoms didn't respond as well as when I took 1gm at night.

Good luck Matt.

 

[Matt_C]

The fatigue I woke with this morning has passed, feeling pretty decent now

 

[Matt_C]

Something i'm confused about with regards to the research undertaken by Duffy and Pridgen is how they are able to patent combinations of different drugs that already exist. If people can obtain the drugs already, how can they make a profit from it? If they develop some kind of combined pill package, people can still surely go and get the drugs on their own and by-pass their attempt to grab some cash.

 

[meeKO]

Hi Matt,
Is sounds like you're having some luck with antiviral treatments. Very exciting for you.
I have been looking into other treatments for my wife who has had ME/CFS for 12 years and has only gotten worse recently and Valtrex sounds pretty promising.
We also live in Melbourne and I was hoping to ask you about how you approach getting it. I wouldn't start anything without consulting her specialist but all info is helpful. If you're up to it and can PM anything I'd really appreciate it.
I have learned alot already just trawling through this thread.
Thanks for this thread anyway and Good Luck,

 

[Matt_C]

Hi @meeKO, i'll reply on my thread, feel free to pm me if you want any more info. Time for an update anyway.

Fristly, I obtain a prescription for my antivirals from my doctor. If you want his details, pm me. I order my valganciclovir from alldaychemist.com, and get my valaciclovir from my local chemist.

I've been on the antiviral protocol for about three months now in total. About three months on Valtrex, two on valganciclovir/valtrex, and about three weeks on the combined valtrex/valganciclovir/celebrex. On the whole i'm coping ok, but the initial imrpovement in my symptoms has not maintained. I was aware I would regress for a period. On a daily basis my sleep is still of poor quality and I do not wake up refreshed. I still sleep for about 4-5 hours, then wake for a period, and can usually get another 1-3 hours of sleep. When I first started the Celebrex, it alleviated the nausea I had been dealing with for a couple of weeks while withdrawing from olmesartan.

I generally feel tired all day. My brain feels a little foggy and heavy and I have a semi-frequent need for a nap during the day. I've had some days where I developed a headache which was very similar to a constant chronic headache I had in my brain stem for a very long time at the peak of my illness. This headache would cause me to collapse upon exertion, with the sensation of throbbing and nausea coming over me. Nothing ever showed up in scans, and I now believe this is where some of the virus has been living for a long time. I believe the recurrence of the headache to be a sign of healing. I experienced some of this while on the olmesartan/antibiotics.

On the whole, though, i'm still better than I was before starting antivirals. I am dating a very energetic woman who i'm managing to keep up with for the most part, although i'm still not as social as i'd like to be and know I can be. I just struggle to talk to a lot of people, due to the tiredness mainly, but i'm happy to be out and about. I've been catching up with friends and going out more than in the past. And i've been working out, doing weights, cycling, and walking. I don't get the same post-exertional malaise I once did. I'm also looking for some work again.

I have a way to go yet. The Dr Lerner protocol says that treatment of HHV-6 is aimed at one year, with no improvement expected for the first 4-6 months. I feel the HHV-6 is a key player, along with EBV. I'm not sure of what my EBV titres are, but my HHV-6 is 80. I don't know how this translates to other scales, but in Australia a reading of more the 20 is considered positive. My doctor therefore believes my HHV-6 load is quite high.

 

[meeKO]

Thanks so much @Matt_C
All this stuff is amazingly helpful. I still need to ask alot more questions of her CFS specialist before starting this or any other protocol. I need to find out his thoughts on the type of viral infection she may have etc.

She definitely has severe symptoms and anything that alleviates them for any time is worth it in my eyes. If she could walk, cycle or see a friend for coffee at all we would be ecstatic as her post exertional malaise is instant and intense.

Alot of these acronyms I'm still getting used to but if they're something we've checked for before they're not ringing a bell with me so definitely something I want to look into.

Thanks for all the great leads. I have alot to talk about with her doctor.

I hope this course keeps making you feel better.

Thanks again.

 

[Matt_C]

Hi again @meeKO,

It's a pleasure. The reason I post here is it may be of benefit to other people trying to find a way out. I also recommend considering the Marshall Protocol if your wife doesn't want to try antivirals. That helped me a lot, but it's a big commitment for a few years and it didn't completely resolve chronic fatigue in my case. There are other cases where it is reported to have induced recovery. Personally, I believe the antiviral approaches show more promise.

EBV stands for Epstein Barr Virus, which is the main cause of glandular fever and is also believed to cause chronic fatigue. HHV-6 stands for Human Herpes Virus 6. They are both very common viruses and are two of eight herpes viruses. Also, HSV (Herpes Simplex Virus) 1 and 2 are suspected to be involved in fibromyalgia and chronic fatigue and other similar disease. Check the links i've posted here and elsewhere on this forum for more info.

 

[SOC]

@meeKO,
I'm a big fan of antivirals for those with active infections. Three members of my family have had huge improvements (1 apparent cure, 1 remission, one bedbound to working full-time) with antivirals as well as symptomatic treatments for hypothyroid and dysautonomia (among other things). We are all clearly in the viral subset of PWME. I wouldn't say that antivirals work for everyone, but if she has active infections, it's definitely worth going after them.

What treatments is your wife getting from her CFS specialist? It seems she isn't getting treated for pathogens yet and her OI is not under control at all. Is her specialist working on some other symptoms at the moment?

Have you seen the ME/CFS Primer for Clinical Practitioners? It's not perfect. In my opinion, it's weak in the pathogens and antivirals and abx area, but there's some good info on treatments for OI, GI symptoms, sleep problems, etc.

 

[meeKO]

Hi @Matt_C
Yes I haven't heard of the Marshall protocol but I will have a search for it.
I have to find out which of those diseasy acronyms she might have to go much further.
You said you followed Dr.Lerner's protocol (?), did you have to consult with him remotely or is there a standard course of action depending on which virus you may have?
I will trawl again through this thread.
Thanks again

 

[meeKO]

Hi @SOC ,
I have to back and do some homework on her treatment history but at the moment she is taking florinef and low dose naltrexone amidst a combo of pills for pain management and sleep.
She was taking an enzyme yoghurt and tried vitamin B injections and DHEA and I'll have to get back to you on the others...
I'll have to check about the pathogens.
Sorry, I've come on here a little half-cocked from eagerness to find more answers and now I have to go back and swat up on her history.
She also has been seeing another specialist who works on the Psych/exercise combo which while being pretty skeptical we are giving it a try. No gains here though seeing a psychologist is a good thing regardless.
Needless to say, nothing has continued to help after initial, slight, gains.
I'm sorry. I will bump heads with her and her Mum and come back with better answers back on my thread.
Thank you for your interest.

 

[SOC]

Hi @SOC ,
I have to back and do some homework on her treatment history but at the moment she is taking florinef and low dose naltrexone amidst a combo of pills for pain management and sleep.
She was taking an enzyme yoghurt and tried vitamin B injections and DHEA and I'll have to get back to you on the others...
I'll have to check about the pathogens.
Sorry, I've come on here a little half-cocked from eagerness to find more answers and now I have to go back and swat up on her history.
She also has been seeing another specialist who works on the Psych/exercise combo which while being pretty skeptical we are giving it a try. No gains here though seeing a psychologist is a good thing regardless.
Needless to say, nothing has continued to help after initial, slight, gains.
I'm sorry. I will bump heads with her and her Mum and come back with better answers back on my thread.
Thank you for your interest.

It sounds like she's working her way through all the standard stuff, except maybe antivirals/abx and immune treatments.

I understand your eagerness. Most of us were thrilled when we finally found PR and its wealth of support and knowledge.

FYI: There aren't many, if any, here at PR who would consider anyone doing the psych/exercise combo to be an ME/CFS specialist. While I doubt that path is going to help, we can always hope that a treatment will do some good. Just be careful... many people with ME have been harmed by the psych/exercise treatment. It sounds like you are intelligent and cautious and therefore won't follow that treatment path into the danger zone.

In case it will help, here is what my daughter and I have done to greatly improve our condition. I don't suggest that it will work for everyone -- even our treatments are slightly different -- but it might give you some ideas.

 

[Matt_C]

I had some blood results that show my liver enzymes AST and ALT are elevated above normal levels, ALT is the most concerning. I'm stopping Valganciclovir and Celebrex immediately. Will monitor and resume dosing with valganciclovir once it's safe to do so.

I wonder if it was combing the Celebrex that caused this so quickly? I've read that liver problems with celebrex are not uncommon. I might give it a miss until Pridgen publishes their results and maybe go back to using olmesartan as my anti-inflammatory and immune support.

 

[ukxmrv]

I'm sorry to hear that this happened. When I spoke to Dr Enlander about Valctye he was going to monitor my liver enzymes (if I was ever lucky enough to be able to afford the drug) but he said he had little problems with his current patients.

Not sure about the Celebrex/Valctye combo.

http://livertox.nih.gov/Ganciclovir_and_Valganciclovir.htm

ntravenous administration of ganciclovir is associated with transient mild-to-moderate elevations in serum ALT levels in 2% of patients. These episodes have usually been asymptomatic and self-limited. CMV infection itself can cause liver enzyme elevations and may account for some abnormalities found during therapy. There is little evidence that either ganciclovir or valganciclovir can cause clinically apparent liver injury. Ganciclovir also has activity against HBV and HBV DNA levels decrease on treatment and can rebound when therapy is stopped leading to an acute flare of hepatitis B, which can be symptomatic and severe.

 

[Matt_C]

Hi @ukxmrv
Thanks for your post. I was aware this was a risk, Dr Lerner's treatment manual states:

"The most common side effect of valganciclovir is hepatotoxicity. If this occurs, the drug is stopped, the dosage is decreased, and is again restarted. When monitoring reveals AST and ALT are normal, the monitoring can continue every four to six weeks, but more frequent with hepatotoxicity. The rule is no valganciclovir at all if there is any abnormality in liver function."

However, looking through my blood results, ALT and AST shot up only after I introduced Celebrex. Either way, i'm withdrawing both celebrex and valganciclovir until my values return to normal, then will reintroduce valganciclovir and cease celebrex altogether.

I feel normal though, so I think i'll be ok. I'm looking forward to getting back on olmesartan and antivirals. As i've said in the past, I think it's an interesting combination that theoretically should work well together. Olmesartan to support immune function (and it is also said to provide protection to various organs, including the liver), and antivirals to combat viral replication. I think taking the olmesartan should help my immune system keep my viral load in check once i've got it down to a point my symptoms are no longer an issue, as well as take care of any ongoing coinfections.

 

[Gingergrrl]

I had some blood results that show my liver enzymes AST and ALT are elevated above normal levels, ALT is the most concerning. I'm stopping Valganciclovir and Celebrex immediately. Will monitor and resume dosing with valganciclovir once it's safe to do so.

I wonder if it was combing the Celebrex that caused this so quickly? I've read that liver problems with celebrex are not uncommon. I might give it a miss until Pridgen publishes their results and maybe go back to using olmesartan as my anti-inflammatory and immune support.

@Matt_C I just discovered your thread and apologize if I am asking things you already shared. I was wondering what dose of Valcyte you were taking when liver enzymes went up and also how long you have been taking it. I do think it is curious that it only happened once you added the Celebrex. I am sorry to hear this happened to you and hope it resolves quickly. You said you were better now and I was wondering if you attribute that to Valcyte. Best wishes!

 

[Matt_C]

Thanks for the condolences...but it's really no big deal. I feel fine. I didn't notice any symptoms at all. I got a message yesterday to call my doc about my bloods so I checked them and noticed the elevated ALT and AST. I saw my doc today and my ALT is about 20% above the normal range. He assured me there is nothing to worry about, I just need to back off the meds and then resume the valganciclovir (Valcyte) when they come back down. This seems to be a relatively common occurrence with Valganciclovir at these doses. I'm continuing with the Valtrex.

I'm not sure where you read that I was feeling better, perhaps when I said I feel fine. I just meant I don't notice any symptoms beyond what I normally live with. I still have symptoms. I think Valcyte is necessary in my recovery and I need to take it for longer. The only frustrating thing for me is having to stop taking it. But hopefully I can get back on it soon.

I was taking 900mg of Valcyte in the morning and another 450mg 12 hours later. The maximum dose according to Dr Lerner's protocol. I've been on it for a bit over two months now, and I started the Celebrex in January. My bloods a month ago were well within the normal range. So perhaps it was just the Valcyte after all. But the Celebrex at the doses I was taking it (400mg per day in divided doses) can cause problems too, so looks like it was a double whammy.

 

[Matt_C]

I went in for surgery on Monday this week and wasn't sure whether or not to stop the antivirals. I was informed today that I should have stopped them one week before and resume them one week after surgery if there were no complications. So i'm now stopping Valtrex as well for about two weeks.