Valcyte- IRIS or Relap

[Warriors61]

After being sick for many years and being treated for both Lyme and Candida with significant improvement, I still experienced exercise intolerance and frequent colds.

My doctor started giving me antiviral treatment since I test high for EBV, CMV, and HHV6. I have taken Acyclovir, Valtrex, and Famvir for CFS/ME at different times over several years with not much benefit.

Recently, my doctor decided to give me a trial of Valcyte to give me a push towards greater health. I have been on Valcyte 450 mg twice per day and Famvir 500 mg twice per day for 6.5 months. I did not notice that much in terms of positive or negative effects, although I was able to very gradually increase my walking during that period.

Unfortunately, at the 6 month point, I developed pretty bad and constant headaches, physical weakness, sore throat, and swollen glands. Two weeks later, my doctor told me to take a break from the medications. But, 3 weeks after stopping the medications I still do not feel any better. I have felt terrible for 5 weeks now. My blood chemistry panel is totally normal (white blood count, liver, kidneys, etc...).

I understand that Valcyte does not cause a Die-Off, but can cause an IRIS reaction. Has anyone had a worsening of symptoms while on Valcyte? If so, what symptoms did you have? Also, how long after stopping the Valcyte did your symptoms continue? Were you able to re-start the Valcyte at some point?

I have tried Cholestyramine, Lipospheric Glutathione & Vitamin C, Cortef, Resveratrol, Vitamin D, and Milk Thistle for symptomatic relief. But, it does not feel like anything has helped. Has anything worked for you if you had an IRIS reaction?

Last, I had hoped that if I was having an IRIS reaction, it would improve when I stopped the Valcyte, but it hasn’t. Also, I have read that after the IRIS ends, patients often feel much better overall from their CFS/ME. But, I am starting to lose hope that it is an IRIS, and I am thinking that perhaps I have somehow experienced a CFS/ME relapse even though I have not had a relapse for several years. Did anyone have a relapse while taking Valcyte?

Thanks so much for any help you can give!

 

[heapsreal]

I think most cfs drs start pts on 450mg a day and go upto twice a day for a few months and then back it off to 450mg once a day. My opinion is after 6 months on valcyte is enough as it starts to take a toll on the body. But id stay on famvir and look into immunovir/isoprinosine to increase nk function, just my opinion.

Valcyte can reduce bonemarrow production which is needed for neutrophils and white blood cells which is why i think 6 months is long enough. Optimize hormones can help bone marrow production and help everything run better.

Give it time off valcyte and see if you improve. It seems common that if one needs to go back on valcyte thst they respond quicker, so thats a plus .

 

[Warriors61]

Thanks so much for your note! I will ask my doctor about Immunovir. What is Optimize hormones? Also, do you know what works for headaches? Do you know anyone who has tried Celebrex or Low Dose Naltrexone for headaches?

 

[heapsreal]

What is Optimize hormones

Just have all your hormones at a good healthy level, not just in range. Many hormone tests can be in range but at the low end which is probably like a somewhat healthy 80yo.

One example i can give is dhea, the normal range here in labs was 2.5 to 15. Optimal would be above 10. Usually optimal range is the upper third of the normal range or some hormones in the lower third of the normal range(males need estrogen but optimally in the lower third of the range). Adrenal and sex hormones all play off each other to a certain degree and have a wider range of effects than most people realise. Also the signalling for these hormones comes from the hypothalamus and pituitary in the brain. It seems that their function is damaged in cfsme, probably a big reason why the hit and run theory of cfsme came about, hit and run i feel is a subgroup. These hormones have alot to do with controlling inflammation, helping with energy production, repair processes in the body, electrolyte and fluid balance to name a few.

 

[Warriors61]

Thanks for the clarification – I thought you were speaking about a product since Optimize hormones was capitalized. I see that you were just talking about optimizing the various hormones. I have had cortisol and thyroid checked, but perhaps I will ask my doctor to add testosterone and DHEA. Thanks again for your help!