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Update and Next Steps....

Posted May 27 2009 10:51pm
I'm taking advantage of my fairly good mood so I can blog. The past couple weeks have been filled with a dark relentless depression. I wake up feeling okay but within two hours of taking Valcyte my mood plunges into the toilet. The depression in addition to the cfs has been crippling. Sending emails, making phone calls have felt impossible. When I'm like that I'm in the grips of Eeyore who's theme is "what's the point" "why bother."

Yesterday I paid close attention to my thoughts as my mood plunged and they were all focused on this illness. This is what the "blue meanies" tell me when I'm depressed: "you'll never have any improvement" "life is meaningless because I'm ill" "you'll never get better, have any peace, find acceptance, etc..." "you'll probably only get worse and end up bedbound" "you got sick because ultimately you're a bad worthless person who has no use in the world" "you have nothing to contribute anymore to why go on living" or "you're just a burden to everyone now." And the days are spent just trying to survive my mind. I haven't been able to blog because I didn't want to involve others in my pity party.

I realize some of this is part of the illness, some is Valcyte, and some is trying raise myself out of the ashes of my old life. I was reading something written by Emmit Miller, MD. He wrote a new book whose name escapes me now. But in the book he talked about the inner voice of healing. This inner voice can get trampled in the throes of trauma, depression, etc...I'm trying to reconnect to that inner voice.

I've been reading a little here and there from the book "Finding the Way Home: A Compassionate Approach to Illness" by Gayle Heiss. I'm finding it very helpful.

As far as updates I've been on Valcyte for 4 months and one week. I will be glad to finish this experience. In many ways it has been bad for my soul and spirit. I don't know what good its doing for me physically. The past couple mornings upon awakening I've told myself I'm taking a break from Valcyte but I get up and take it anyway just in case its doing some good.

Awhile ago I wrote a post and then deleted it (and then did the same thing again on Friday-another symptom of the depression) but Jo made a great comment about the differences between the UK and US regarding treatment for this illness. I saved it but have so many emails in my inbox because of all the groups I'm on that its a bit overwhelming to find it. I was struck by her comment and it has stayed with me but it highlighted for me how drug focused we are in this country about finding a medication to fix the unfixable. Forgetting for a moment the horrendous attitudes that take place in this country and the UK towards me/cfs one thing the UK has done correctly is helping people focus on pacing. Truly pacing is the only proven method for dealing with this illness. Cort Johnson mentions this in his reporting of the IACFS/ME Conference in Reno: http://aboutmecfs.org/Conf/IACFS09Behavioral.aspx

One of the poster presentations was by a man named Ashok Gupta who recovered from this illness. His was viral in nature. He developed a program called the Amygdala Retraining Program and runs a clinic in London. His theory is that the amygdala, a structure in the brain, is overactive and responsible for maintaining the symptoms of me/cfs. He has developed some powerful techniques to "retrain" the amygdala. I've decided to try his program. I really need some help in calming my overactive nervous system down and I think this can help. He says it can help 85% percent of patients. I've ordered the program and am looking forward to receiving it in a couple weeks. I will report on my progress with the program. He asks that one commit 100% to the program for 6 months. So that's what I plan on doing next.

For the past year I've been treating pathogens but haven't had a lot of improvement. Along with the Amygdala Retraining Program I will also consult with an ND to get my hormone levels back to normal. This is something my current cfs doctor seems to be weak on.

I've had enough of treating pathogens. The "you have to feel worse in order to get better" philosophy is getting old to me. I don't want to spend the rest of my life in a herxeimer reaction so I'm taking a break from chasing pathogens. No one knows what causes this disease much less how to cure it.

I want to stop the Valcyte. I think my body is telling me to. But, unless there is some indication not to, I will continue it for the next 54 days. If someone were to ask me if I thought they should try Valcyte I would say no (unless they were young). The data just isn't there to support trying this drug which causes horrible side effects. I did a rough poll of various message boards where people had tried Valcyte. I would roughly estimate that less than 30% have improvement. There are many other ways to treat HHV 6. Really though I think the body's nervous system must be calmed down and then work on building the immune system.

I feel a little hope today. Not because I'm going to be cured. I've given up on that (which isn't a bad thing). I feel hope because maybe I once again believe I can still create a life that is rich and meaningful.
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