I am familiar with the smouldering virus theory, but I need a doctor and an insurance company to go along with it. If a test were available that would allow my doctor to write a prescription that would go a long way toward my goal. Is this a theory or a proven possibility?
I would print out Bhupresh Prusty's 2018-2020 papers and take them to your doctor. He has said that his finding apply to other herpes family viruses, and not just HHV6. There are talks that he has given and interviews that you can check this with.
What he has found is that the viruses don't have to be fully activated, they just sit there and smolder along, as you mentioned, and cause mitochondrial fragmentation, which causes a hit to energy production.
I had a doctor at the Mayo Clinic that had very little knowledge of treating viral infections, he was a neurologist, but he was open to new ideas. After 25 trips to the clinic I gave up as there wasn't anyone there who understood ME/CFS. My doctor told me that no researcher there would put his career in jeopardy by wanting to research it. That was 11 years ago, so possible things have changed since.
The good news is there's been a lot of good research published in the last 8 years that, if you follow it, and put the pieces together, it is quite possible to come up with treatments that are helpful. My doctors and I are reading papers and putting the pieces together, testing to see how my situation matches what's in the papers, and then applying treatments as it seems appropriate to do.
At least he would listen to what I had to say and I did manage to convince him to give me the Valcyte prescription. I probably should have fought harder to stay on the Valcyte longer, but back then this was very new and I wasn't sure how long I needed to be on the drug either.
Jose Montoya has said patients have been on it for 5 years. My doctor kept me on it for a year at a high dose, 1.8 grams per day, and then after I had a negative Epstein-Barr PCR test, he kept me on it for another 8 months at half the original dose, until I had three more negative PCR tests. I also had HHV6, CMV, and HSV2, but they were more difficult to test, But this is why valganciclovir was chosen, as it is effective for all of these.
My GP won't prescribe the drug and I don't know of anyone in the area that will. I don't want to send off to a foreign source as the price of the drug makes it very worthwhile to manufacture fakes. I also am not in a position to spend the thousands of dollars that would be required if insurance didn't cover it. Since I have tested positive for both herpes and enteroviruses, Valcyte won't do it
Definitely one needs to use the drugs appropriate for each set of viruses. Valganciclovir is appropriate for multiple herpes viruses, valacyclovir and famvir are appropriate for more limited sets of herpes viruses. I was originally started on valacyclovir, but my insurance would not let me take the 3 gram dose that my doctor wanted me on, they would only approve two grams a day. I am not positive about the correct treatment for enteroviruses, but there has been a lot of discussion on this site and you should be able to find the threads pretty easily.
As for doctors, it's important to figure out if a doctor is willing to help you and willing to do something a little bit out of their comfort level if appropriate information is provided to them. Some doctors, especially those working in a large medical system, are hemmed in by policy, or their own beliefs, and will not step out of the box even though a patient needs it. In this case, finding another doctor to prescribe might be wisest. I found the doctors who practice independently, admittedly who are fewer these days, are most likely to think for themselves, and consider scientific evidence shown them, and consult others to be able to help an individual patient.
I believe that the smouldering virus theory is the most likely cause of this illness. My illness started with a cold and improved with an antiviral. I do believe that we need better antiviral drugs before a cure is found. I like to think that if we had one of Star Treks transporters that would be the answer. We would dematerialize, scan for viruses and then rematerialize minus the viruses. That would be a very quick cure. I guess that the second best answer would be a time machine, I would just go 100 years into the future, get cured and come back.
I think you mean the Star Trek tricorder.
Getting rid of viruses is important, however they do a lot of collateral damage, and the advantage to the tricorder approach would be to detect any biochemical abnormalities or physical damage leftover after the viruses, and help to correct that.
At this point, lab testing is also needed to determine biochemical abnormalities and mitochondrial damage caused by the viruses or fungal or bacterial infections and then those must be addressed too, as discussed in the mitochondrial correction paper I posted above. There are definitely other impacts beyond mitochondria that should be looked into, and I'm not ignoring these, but a lot of it is individual.
It sure would be nice to have that tricorder though... Or to travel into the future and be cured, and then return to the present. Although given the state of world affairs, I might choose to come back a year or two from now, and not to 2020...
