Have Had Mono-Like/CFS Symptoms for 15 Months: Need Help

Posted by phoenixlion @phoenixlion, Oct 31, 2021

I'm looking for a specialist to help me with this and the only institution that seems to acknowledge it has been Mayo. The only somewhat effective treatment has been Valtrex and most doctors have no clue or think I'm a psych case for complaining about it even though typing EBV or herpes and neurological into a search engine leads to several papers from the NIH and others supporting a connection. For years prior, I had tension headaches which I could only get the symptoms treated by mind-numbing Topamax and have always had depression. A few years ago, I came across a paper suggesting Valtrex as a treatment for bipolar type II headaches based on the theory that a lot of neurological conditions are caused by brain inflammation from herpes viruses. After testing confirming I had high titers of EBV and HSV-1, my GP reluctantly agreed to prescribe Valtrex (500 mg/day) and my headaches miraculously went away. In July of last year I started getting brain fog, ataxia, swollen lymph nodes and severe memory loss and started researching this and thought I had encephalitis from EBV/HSV. I found an alternative treatment to an IV of acyclovir would be taking high doses of Valtrex so with limited side effects, I started taking up to 8000 mg/day and my symptoms improved (gave up on the hospital with 5 hour waits and COVID). Of course the GP and neurologist dismissed my claims and wanted to take a long detour through MRI and behavior testing (MRI came back normal) so I went to a CFS clinic but the naturopathy crowd wanted to limit this dosage and wanted to put me on a bunch of vitamin IVs (I did try all the supplements but can't say if any had much of an effect). (The CFS clinic did confirm the active infections of EBV, HSV-1 and HSV-2 with my bloodwork.) I've continued to have these symptom flare ups since with occasional but incomplete remission but it's getting worse, even with the Valtrex at 1000 mg/day (which the CFS clinic prescribed but said they would "lose their license" if they prescribed more). I had an appointment with an infectious disease specialist who despite supposedly being the best in the area seemed to have zero knowledge of neurological effects of herpes viruses and told me to stop taking Valtrex because I didn't have lesions. It's extremely frustrating as this has severely affected my job performance and quality of life. I am going to have to go on disability if I can't find a better specialist who can provide a more comprehensive and aggressive treatment. Is there someone at Mayo who specializes in this? Thanks.

Interested in more discussions like this? Go to the Infectious Diseases group.

@phoenixlion, welcome to Mayo Clinic Connect. I'm sorry to hear about your fruitless search (so far) for answers. Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a serious, long-term illness that affects many body systems. Unfortunately many people report having to seek help for a long time before finding a specialized team that understands.

Should you wish to consult with experts at Mayo Clinic, please find more information on how to submit an appointment request here: http://mayocl.in/1mtmR63

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Yeah, I don't want to go through the same process with a very expensive medical provider to be given the same outcome. I just was looking for a specific doctor recommendation at Mayo so I can see whether it's worth it. I've been through the same process with this condition and two others (depression and low testosterone) where I'm milked for fees and I ultimately take initiative and discover my own issues and just tell the doctor what I have and what I need.

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I have heard of a drug called Ampligen that is available in Argentina (and possibly Canada) to treat chronic fatigue. Are clinical trials being done in the United States? I would sign up to participate if they are.

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@nataliem

I have heard of a drug called Ampligen that is available in Argentina (and possibly Canada) to treat chronic fatigue. Are clinical trials being done in the United States? I would sign up to participate if they are.

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You can use the clinical trial database to search for active clinical trials here: https://www.clinicaltrials.gov/

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ME and CFS are considered by some scientists to be autoimmune conditions triggered by a viral infection. Many have found recovery by removing certain foods from the diet that are known to trigger autoimmune flare-ups.

I have been in remission for four years now. You can google: Autoimmune wellness Stories of Recovery ME CFS (or spell out those conditions.)

Dr. Sarah Ballantyne has a comprehensive website on the topic as well.

This information is all free and since the diet is healthy I tried it just to see if it would help and I began to recover fairly quickly.

I'm hoping for the best for you.

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