My brain fog is back bigger and better than ever! The one positive thing I can say about the brain fog is my delight in finding things I forgot I had. I've made quite a few discoveries these past few days.
I spoke with my cfs doctor yesterday. Luckily it was right after I received an email with the announcement by Dr. Meirleir that he had discovered the cause of cfs so I had a chance to run it by my doctor. He was skeptical but asked me to send him the link. My doctor's office is in regular communication with Dr. Cheney and other top cfs docs. They hosted the Sonoma Working Group which consisted of all the top cfs docs around the world (as well as LLMD's) to put their heads together to try and figure this stuff out. I'm reserving judgement about the announcement until I have more information.
I'm to continue Valcyte for six more weeks. But if my mood worsens to stop it. We are going to try Lamictal to address the depression. Lamictal is an anticonvulsant that has been found to be effective against atypical depression as well as treatment resistant depression. It may also have minor impact on HHV 6.
Once Valcyte is done I'll start treatment for parasites. I've had intermittant upper right quadrant pain since my illness began.
There is an immune modulator coming out in the next couple months (no-its not Ampligen) that my doctor wants to try on me to see if we can ramp down the overactive immune system.
I also got a referral to a cardiologist for a tilt table test to be evaluated for POTS (postural orthostatic tachycardia syndrom). Link to POTS place here: Sue Jackson had mentioned this might be a possibility with me so I brought it up with my doctor and he agress. It's a bit strange to see a cardiologist for POTS because its actually a neurological condition but affects the heart.
The antibiotics, Mepron, and Valcyte have been rough on my body and it will be good to have these treatments behind me. I think I'm going to be focusing on alternative treatments next.
I have run across an interesting phenomenon in the cfs world. This world is centered around contact via the internet so maybe that accounts for some of this.
Chronic Fatigue sufferers often talk about judgements and criticisms from doctor's and friends or family members who don't believe them etc. I've encountered doctor's who don't believe in this illness as well as insensitive comments from a few people I know. But I have to say the most destructive criticisms and judgments have been from fellow cfs sufferers.
I've seen people on various message boards jumped on for exploring lyme or seeing alternative practioners or seeing western medical doctors. Everyone has their opinion. We criticize people who are healty for doing the very thing that we do to each other. Which is to criticize the way others are dealing with their illness. I think feedback is important and I don't shy away from that but I do take issue with harsh judgements and criticisms.
I have been criticized for exploring various treatments to improve my quality of life and I'm tired of it. I am on Valcyte because every doctor I have seen has recommended it based on test results. I have high titers to EBV and HHV 6-both are very destructive viruses. I have been seen by a rheumatologist, an immunologist, a doctor who specializes in treating this illness. All of whom looked at my symptoms and my test results and came up with the same conclusion-I have active HHV 6 and EBV. These viruses cause cancer, multiple sclerosis, viral myocarditis, and many other things. So I'm taking Valcyte to deal with the viruses. Do I like being on Valcyte? Absolutely not! Do I think its going to work? Who knows?
But you know what? As bad as the depression has been, at least in the back of my mind taking Valcyte has given me six months of hope. Sometimes it has been that tiny ray of hope that the Valcyte might help that has kept me alive. If that's the most I get from taking Valcyte for six months so be it. At least I'm alive. There are probably a couple people that are grateful for that.
So please, if a treatment that someone is pursuing is giving them a sense of hope, let it be. It might be the only thing keeping them going.