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January-what antivirals please?
1 Replies
kvc33 - September 28

January what antivirals were you on please and did you get tested for viruses and did anything come back positive?


January - October 6

Hi kvc - sorry to be so late getting back to you. Things here were super busy.

I was lucky enough to have good doctors years ago who worked with me to see what would help. I did not go through a complete viral screening (though I had many serious "flus" over the years). I was only tested a few times, and came out positive for Epstein Barr, varicella and zoster (which is a reactivation of varicella/chickenpox virus). I have taken Tamiflu and acyclovir. They say you only get zoster (shingles) once, but if your immune system is low, you can get it repeatedly, which is what happened to me when I was very ill. I hardly had any rash on my skin, but I had bad neuralgia. My doctor gave me acyclovir to see if it would help the pain, and it really did. While I was taking it, my brain felt like it had cleared out and my thinking was sharp again.

I think CFS and fibro fog may be somehow related to infections. There are lots of different bacteria and viruses that can cause a mild form of encephalitis or meningitis - for example, West Nile virus, which you can get from a mosquito bite; Lyme Disease can affect the brain; so can the cold sore virus, HSV-1 - it can cause a serious and deadly encephalitis - and there is some indication it may be linked with Alzheimers, along with a genetic profile that makes some people more susceptible to it. Most people are infected with HSV-1 in childhood and develop immunity. But maybe not everyone, depending on your genetics.

There is a lot more information available on SERIOUS encephalitis infections… but I wonder if some of us have a very mild infection, or something left over from a previous viral episode that gets overlooked by the medical community, so maybe we are walking around with a low-grade infection that isn't enough to make us "really" sick… just enough to interfere with our thinking…??

I copied this from the U of MD Medical Center, but it refers to serious encephalitis cases:

"Since it is difficult to determine the cause of encephalitis, and rapid treatment is essential, clinical guidelines recommend immediately administering intravenously the antiviral drug acyclovir without waiting to determine the cause of the illness.

Once the doctor receives results from diagnostic tests, drug treatment depends on the cause of the encephalitis. Antiviral drug treatments for specific causes of encephalitis include:

Herpes Simplex Virus. Acyclovir is recommended.
Varicella-Zoster Virus. Acyclovir is recommended. Ganciclovir or adjunctive corticosteroids may also be considered.
Cytomegalovirus. Combination of ganciclovir plus foscarnet.
Epstein-Barr Virus. Corticosteroids may be used, although risks may outweigh benefits. (Acyclovir is not recommended.)
Human Herpesvirus 6. Ganciclovir or foscarnet are recommended for immunocompromised patients.
Measles. Ribavirin may be considered.
ADEM. High-dose intravenous corticosteroids.
St. Louis Encephalitis. Interferon alfa-2a may be considered.

For bacterial meningitis, antibiotics (not antiviral drugs) are used."

I have heard of people with fibro being treated with interferon. I don't know what the results were. I also have taken corticosteroids at times for other illnesses - and while I don't like the side effects - it seems like my brain works better while I'm taking them too! The down side is you have too much energy!

I'd suggest you get a viral screen if you have a history of viral illnesses or "flus." If your doctor won't help, there are online doctors who will work with you. I am pretty sure I put a post about this on here before. There is a Dr. Dan Dantini who works with viral illnesses and fibro. I also think Dr. Jacob Teitelbaum will order a viral screen if you are working with him. IF you google "fibromyalgia viral" there is a lot of information online.

And also, kvc, give yourself time. I know you are going through withdrawal. It took me well over a year to begin to feel normal after I quit the antidepressants. It's been several years now and I DID get back normal. It just took a while! I know you have days when you feel miserable, but I suspect much of it is the drug withdrawal. I know what it looks like now, and I've seen my friends go through it if they stop taking even a small dose of antidepressants. They think they are going crazy! Nope… it's just that they quit taking their meds for a few days. Or they stopped without tapering down slowly. It's something that the medical community does NOT educate us about - so we need to support each other. Hope you find this information useful. Wishing you a good day.



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