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