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Please Tell Me Your Valtrex + Valcyte Story

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Alice,

My whole story like yours, starts way back probably fifteen years with a classic Lyme/misdiagnosed case. Extreme Arrhythmia, extreme joint pain, eye problems, but Lyme was just coming to Virginia and mostly overlooked. It was only found by my family physician 18 months ago after a million visits to different specialists, they quit looking for it years ago, and yes I could have been re-infected, but that is doubtful.

I have pretty much been involved with a University hospital or other docs throughout this period, when I finally and completly bottomed last time, my family doctor and an Internal Medicine doc at Hopkins sent me to the Sydney Kimmel cancer clinic, they both thought I had Leukemia my blood work was so bad.

Oncology and Hematology determined that all the re-activated virus's were the cause, and the fiasco that followed by specialists equaled too or exceeded the last many years of mismanagement. Short of the long, my family doc was ready to do whatever it took to bring me back, so we worked together to do what we could to aggressively treat the infections.

My concern with Valcyte is a known carcinogen in mammals and can really tank your blood work, so I will reduce to 900mg. on Wed. and I will keep you posted as to how I'm feeling, I think I'll feel better
on a lower dose.

Regards,

Roger
Nventor-
So your story doesn't start with the sudden illness several months ago, it actually started back many years ago but became suddenly worse with the more recent acute illness. Do I understand it right that you're taking the Famvir, Immunovir, antibiotics and Trans Factor long-term, and your main concern is with the Valcyte, which you just cut down to 900 mg and plan to go completely off of as soon as your titer is down? What are your plans for the other medications?

The reason I started this thread is because I was seeing that folks were describing their personal experiences on Valtrex OR Valcyte but not describing any experiences with both that I could find. You and KC22 are the only 2 who have responded who have taken both, and you plan to drop the Valcyte as soon as you are able. So, it appears that many more people who contribute to this forum have taken EITHER Valtrex or Valcyte than are taking both. I wish I could see where you will be at in several months and whether the decision to do the Valtrex short-term was beneficial in the longer-term. Will you be as happy with your long-term results as KC22? The thought of taking the Valcyte in smaller doses and shorter-term is certainly appealing given its' risks and side effects, but will it compromise the long-term results?

Please continue to keep me updated on your progress.
 
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Alice,
The determination to continue on current meds will be made at some point with myself and my PCP. As for Valcyte, I will try it for another month or so @ 900mg. If this is well tolerated and I don't feel completely wrung out, I may consider continuing. A lot is dependent on blood work and how I actually feel. My main concern is still the CMV, so I'm watching those numbers closely.

P.S. I also privately emailed you.

Best,
Roger
 
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I am now at 12 weeks on the Valcyte plus Valtrex. I continue to be headed downhill, as does my daughter. If I don't bottom out soon, I will drop the Valcyte to 2 pills a day (900mg) at either week 13 or 14. I am concerned that if I don't slow down the downhill trend I will be unable to get labs or go to doctor visits soon. I am housebound other than labs and doctor visits. I will report on my progress again in a couple of weeks.
 
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Hi Alice:

My son has been on Valcyte for 24 months for HHV-6 and EBV. I have been on Valcyte for 18 months for HHV-6,EBV and CMV. I have also been on antibiotics for 18 months for micoplasma. I may have 2-3 other co-infections which they are just now discovering in me due to new virus headhunters looking for obscure opportunistic infections.

Our specialists do not use immunovir (sp?) nor Valtrex, so we are not on these,

Our latest Blog gets published in a few days and it has the data describing our history and latest results and progress to date. I will mention that the co-infections are playing a larger role in this illness than originally thought. Also, it is my understanding that the Stanford Protocol was changed in regards to starting patients out at 1800mg per day, then reducing to 900mg. I could be wrong on this, but I beleieve standard treatment protocol is 900 mg per day or individualized per patient drug tolerance.

Blessings,
Julia Rachel
VLG on Valcyte
 
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Hi Alice:

My son has been on Valcyte for 24 months for HHV-6 and EBV. I have been on Valcyte for 18 months for HHV-6,EBV and CMV. I have also been on antibiotics for 18 months for micoplasma. I may have 2-3 other co-infections which they are just now discovering in me due to new virus headhunters looking for obscure opportunistic infections.

Our specialists do not use immunovir (sp?) nor Valtrex, so we are not on these,

Our latest Blog gets published in a few days and it has the data describing our history and latest results and progress to date. I will mention that the co-infections are playing a larger role in this illness than originally thought. Also, it is my understanding that the Stanford Protocol was changed in regards to starting patients out at 1800mg per day, then reducing to 900mg. I could be wrong on this, but I beleieve standard treatment protocol is 900 mg per day or individualized per patient drug tolerance.

Blessings,
Julia Rachel
VLG on Valcyte
Hi, Julia-
Wow, what a coincidence. I just read your blog a few days ago. Thanks for doing it. I found it very informative and inspiring. It was referred to it when I was reading one of the other threads on this site (I can't remember which one.....). I'll be eager to read your new blog. We're following Dr. Lerner's guidelines, which is where the 3 Valcyte pills a day comes from. So far, we've tolerated it well, without any known side effects from the pills themselves, but the question has come up that we might be taking so much Valcyte that some of the extra exhaustion we're seeing comes from that third pill.
 
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Week 16 on Valtrex + Valcyte

Well, it's been a couple of weeks since I updated this thread, so I thought I'd better get going. Tomorrow will be Week 16 of my daughter and I being on Valtrex + Valcyte. At long last we both bottomed out in energy levels, probably about 2-3 weeks ago, sometime it's hard to tell because of everyday fluctuations in energy levels. My energy levels are (very) slowly but surely starting to rise, possibly my daughter's too, but she is higher functioning than me and more likely to overextend herself, so it's harder to see consistent improvement.

On a side note, the antivirals have had a dramatic effect on another chronic problem that I have that I haven't really paid much attention to lately. I have had a huge improvement in chronic low grade ENT infections I have had for the past 40-ish years. Most of the time these problems just sort of sat on the sidelines, not bothering me too much, so I didn't pay too much attention to them since my insomnia and fatigue were so overwhelmingly dominant. Sometimes they would flare and I would be very sick for a while, tho. Anyway, they are about 90-100% improved, almost totally healed, including chronic tonsillitis, sinusitis, eye infections, ear infections, and gingivitis. Totally unexpected.

Alice
 

Grape Funk

Senior Member
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This is really interesering to see.

Valcyte, and how they think many of it's positive effects on CFS may be because of immunemodulation

http://www.youtube.com/watch?v=Riybtt6SChU&feature=player_embedded#at=2041
Redo, do you think in the first part of the video( around 20-35 min) Montoya is talking about acyclovir or valcyte when treating his patients? I ask because he displays the acyclovir trial with the original CDC paper. It seems like valcyte but i could be wrong.
Of course i'm the lucky one in the HH1 and EBV category, the "tougher to treat kind". I also liked the reference to HELL and HEALTH, i at least laughed as no one from the audience seemed to as Montoya emphasized that.
 
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I have been taking generic Valtrex for a month now, to treat active EBV and HHV6. I take one gram three times per day. So far I have had increasing fatigue, increased heart rate (my resting heart rate went from 60 bpm to up to 95 bpm) and stomach pain, occasional nausea and loss of appetite. Before I started the Valtrex I slept about 12 hours out of every 24 and had a couple 'good' hours on most days. Now I sleep about 14-15 hours out of every 24 and rarely have a 'good' hour. I'm also feeling quite depressed.

I haven't read of anyone else having this experience with Valtrex only. I don't want to stop the meds if there's a chance that they will help in the long run, but right now I'm feeling quite discouraged. Dr. Black had told me there were no side effects. I have two kids to take care of, and that is getting increasingly difficult when I am so tired.
 

SOC

Senior Member
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I have been taking generic Valtrex for a month now, to treat active EBV and HHV6. I take one gram three times per day. So far I have had increasing fatigue, increased heart rate (my resting heart rate went from 60 bpm to up to 95 bpm) and stomach pain, occasional nausea and loss of appetite. Before I started the Valtrex I slept about 12 hours out of every 24 and had a couple 'good' hours on most days. Now I sleep about 14-15 hours out of every 24 and rarely have a 'good' hour. I'm also feeling quite depressed.

I haven't read of anyone else having this experience with Valtrex only. I don't want to stop the meds if there's a chance that they will help in the long run, but right now I'm feeling quite discouraged. Dr. Black had told me there were no side effects. I have two kids to take care of, and that is getting increasingly difficult when I am so tired.
I wouldn't expect that from Valtrex, but everybody is different. I have noticed occasional stomach pain/nausea if I take Valtrex without food or immediately before laying down. I take 4 doses per day, so my "bedtime" one has to be taken with food about 15-30 mins before I lay down.

You do know you have to drink lots of water with Valtrex...? That's to minimize the risk of developing kidney stones, I think. If you drink a lot more water without adding electrolytes you could be getting an electrolyte imbalance which might make you feel yucky and fatigued. Just a thought....

Have you talked to Dr B about this? It doesn't seem normal, so you might be having an idiosyncratic reaction to Valtrex and therefore need to stop taking it.
 
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Thanks for the quick response. I sent a couple emails to Dr. Lapp, who knows me better than Dr. B. Hoping to get a response this week. Until then, I'm cutting my dosage. I skipped my morning pil today and felt a lot better without it! Don't want to give up on it if it will help in the long run, though. Thanks again.
 

ukxmrv

Senior Member
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Thanks Les, does it say the name of the manufacturer? (just asking as I have been using Cipla with good results but had a strange reaction to another generic)
 
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It's manufactured by Mylan. Wish I could try Valtrex from Cipla, but my insurance will only pay for drugs through CVS. If it's not too expensive I guess I could try Cipla out of pocket. Glad it's helping you!
 
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It's manufactured by Mylan. Wish I could try Valtrex from Cipla, but my insurance will only pay for drugs through CVS. If it's not too expensive I guess I could try Cipla out of pocket. Glad it's helping you!
You can ask the Pharmacy Manager at CVS to order the Valtrex from a specific manufacturer. I have done this in the past.
 

Charles555nc

Senior Member
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I think valcyte suppresses your immune system over the long term. I think there was a study that showed the best dose for liver transplant was 450 mg because anymore was counter productive.

I take 450mg valcyte for monday-friday with the weekends off to let my immune system recover.

I take alot of other antiviral stuff to prevent resistance: 4.5 mg LDN, benicar 40mg 4 times a day and avoiding sunlight (marshal protocol), 1800 NAC, 6 grams of sodium ascorbate, selenium 100 mcg.