It was very warm on Saturday. August is supposed to be the coldest month of the year. However, we had summer like weather as if we belong to northern hemisphere. (And at the moment, we are having heat wave!)
There is no window in Dr TL’s office, therefore he had no idea. He asked me about the sky. He used his imagination to enjoy the beautiful day. There’s a poet in him. I suggested he should go out every now and then to enjoy the view.
He said he is doing okay without the view. He likes his job and patients, so he is not stressed. I’m fine with whatever he does as long as he is happy.
We touched on the topic of using antiviral for ME/CFS treatment. People often talk/ask about it online, but I don’t know any success story in person.
Dr TL showed a great interests in it. On the other hand, I am a little sceptical.
I tried Combined Antibiotic Protocol (CAP) last year. My condition got worse at the initial stage and I stopped it before increasing antibiotic to the next level and before it damaged my liver and kidneys.
At the moment, I’m trying Low Dose Naltrexone (LDN). Honestly, I’m not seeing any improvement. People who had improvement with this treatment experienced it immediately. So, I’m coming to the conclusion that this treatment is not for me. Probably, there is no harm in continuing with it. But it is just too expensive when getting no result.
I told him that I’m not keen on medications, although I’m not against medications in general. However, when it comes to ME/CFS treatment, there is not much hope… Each person have to find their own treatment from trial and error with great patience.
My condition developed through gradual onset. Then, I had rapid decline with antidepressant, exercise and CBT to push for more activity instead of resting. And I thought antiviral treatment is for those people who got acute onset after virus infection.
Dr TL explained it to me with sad eyes that medication is the only treatment I could have. (On the other hand, there is not much medication offered to treat ME/CFS by government… If we decide to go ahead, it is going to be very expensive. Pensioner cannot really afford it.)
We joked that I am his guinea pig. Although, he made it clear that he is not experimenting on me. He is curious if it works for me. And we never know until I give it a try. He added that he would give me carrots and lettuce as well. I mimicked a guinea pig as a response.
I know he is right. I’m also grateful for his attitude that he is going to give me every treatment opportunities that are scientifically legitimate. I don’t have to wonder what if. And I don’t have to be one of desperate people who are looking for a doctor who would give them certain treatment and/or medication. I’m a privileged patient thanks to Dr TL.
I got a homework to find out what amount do they take. I believe we are making a good team.
“You can do my tax (when you get better)”
He joked. I actually liked the idea.
~ * ~
This is what I found about Valtrex, the antiviral medicine.
It can be effective for people with CFS with Epstein-Barr virus and/or HHV-6 subset.
I found there is a person with ME/CFS who is taking 500 mg Valtrex daily, which seems to be more sensitive…
There is also Valcyte to treat the same condition. Probably you have heard about Valcyte more often than Valtrex. For your information, this is an article explaining about link between CFS and HHV-6. I’m sure you can find more on Internet.
Now I’m thinking that trying antiviral medication may not be a bad idea for me. Although I didn’t have an acute onset of ME/CFS, I had a bad case of measles (or could be shingles) when I was a toddler. I already had mild case of ME/CFS since I was a child. And I had continuous canker sores/cold sores and respiratory problems until early adulthood. Nobody took my problems seriously.
I took antiviral medication for two days for cold sores. ME/CFS flare up seemed to be improved with the medication. Now that I’m not taking the antiviral, my condition is going back to worse again…
So, I’m curious what Dr TL will suggest at the next appointment.
Posted in Doctors, General Medicine, ME/CFS Tagged: CAP, LDN