When I first discovered that I have ME/CFS I started searching what might help me feel better. I believed I had some kind of virus in my system my body just couldn’t kick. And I knew I had chronic Epstein Barr. I had several tests over the years and some came out positive that I had the active form of the virus, and some came out negative and just showed I had the virus in the past.
I had fever like bouts where I would be down for no reason with the aches and pains of a fever, and overwhelming fatigue and sleepiness. (Mono). Yet no temperature and no clear reason for what I was feeling.
In my search I found antivirals. Naturally because of my experiences I was excited to try it. I took a study I read, printed it out, took it to my GP and asked him if he would be willing to prescribe it to me on an experimental basis. Thankfully he has been my doctor since I was a child and he was willing to do it for me. He prescribed me a low dose of the Valtrex (generic valacyclovir) 500mg/day and I got started. After a few months I went to see Dr. Nathan Holladay who practices in Salt Lake City. He told me that studies have shown antivirals in low doses to be unhelpful. He prescribed me 3 grams/day and that’s when I started to feel a difference.
MY FEVER-LIKE MONO EPISODES DISAPPEARED!
To be clear, I still have fairly severe PEM. But my episodes were gone.
DO YOU GUYS HEAR ME!?!? haha. FLU LIKE EPISODES GONE
Alright, so here comes the disclaimers.
Antivirals don’t work for everyone.
If you are going to try them (Valtrex) it has to be the correct dosage: 3 grams/day.
If you are like me and believe your illness was generated because of viral factors, I believe it’s worth a shot. The generic forms of these medicines are fairly cheap and it could be life changing for you as it was for me. Why not try?
So, how do I get it?
Unfortunately for this one you have to have a prescription. I suggest you do what I did. Print out a study and take it to your general GP, or whatever doctor you see. Here are some studies you could taking in (the result of a quick google search on my part), and quotes that help validate your case:
Click on yellow title to read article- they are hyperlinks
“Montoya pursued the idea that CFS/ME may be caused by an inappropriate immune response to a viral infection, such as human herpes virus or Epstein-Barr virus, which can periodically reactivate or reinfect patients. In 2013, he published the results of a placebo-controlled trial of valganciclovir with 30 CFS/ME patients that had raised antibody levels to either human herpes virus 6 or Epstein-Barr virus. After nine months, patients who received valganciclovir showed improvements on the fatigue severity scale (1–7), with scores declining from 6.1 to almost 5.5, compared with a slight increase from 6 to 6.2 in the placebo group, although a score above 5 is still considered severe fatigue. There were also improvements on the mental fatigue subset of the multidimensional fatigue inventory, as well as in patient-reported cognitive function.”
Montoya JG, Kogelnik AM, Bhangoo M et al. Randomised clinical trial to evaluate the efficacy and safety of valganciclovir in a subset of patients with chronic fatigue syndrome. Journal of Medical Virology 2013;85:2101–2109. doi: 10.1002/jmv.23713
“Patients were treated with the antiviral, valacyclovir (Valtrex), at a dose of 1000 mg twice a day. Only one patient experienced nausea and discontinued the antiviral. Improvement occurred over the course of 3-5 months. Eighty-six percent of the patients responded by 3 months, and 92% responded by 5 months. Symptoms of fatigue, exertion induced malaise, excessive sleep, napping, unrefreshing sleep, headaches, cognitive symptoms, and emotional symptoms all resolved. “
Dr. Lerner said:
“I’ve got people who are up to 8 or 9 or 10; fully recovered able to exercise and participate fully in life. I have all kinds of people who are not as well but are living normal lives now, marrying when they couldn’t marry before, working when they couldn’t work before. It’s been extraordinarily satisfying”
In one of her posts Jennifer Brea mentioned Valcyte as something that significantly helps her achieve an almost normal lifestyle.
Alright, when it comes to dosing I don’t actually know where they got this information, but both Dr. Lucinda Bateman and Dr. Nathan Holladay explained to me we need high doses of antivirals to see if they will actually help us. I am not sure the dosage needed for Valcyte, as I have not taken that. But when it comes to Valtrex you need 2-3 grams/day. 1 gram in the morning, one in the afternoon, and one in the evening. They both told me separately and on separate occasions studies have shown it to actually work in high doses. Although I am not sure where they got that information, I believe them!
High doses of antivirals can damage your kidneys and liver. Your doctor will likely be aware of this and track your blood creatinine ratio levels (and others) regularly. At least every six weeks.
The good news about this is blood tests can show early if it’s damaging your kidneys and simply stopping to take them can halt damage that has been caused. So it’s not too big a deal as long as it is being monitored correctly!
So, will you try it? Have you tried it? What results did you have?
As always, sending my smiles, hugs, and love!
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