I am now six weeks into my Ampligen treatments. There have been some serious side effects and some seriously hopeful moments. I have been at the 100 mg now for two infusions. It is a great way to catch my breath, take stock and figure out what is and what is not Ampligen dose related. Since you cannot miss a dose of Ampligen, I think that for me at least, cutting the dose way back is a viable way to get ahold of the side effects and take stock of my health. I can’t plan my next steps if I am just barely surviving.  

I have found the following symptoms to be directly related to the dose. Bear in mind that this is reflective of my body and may or may not apply to you should you choose to do Ampligen.

At the 100 mg level –   

Lymph node swelling  has been reduced to mild tenderness.

Pain  has been reduced to mild and is now completely taken care of by a dose of Tylenol.

Fever has gone entirely.

Spine and neck  pain has been reduced significantly.

The symptoms which have not yet improved on the lower 100 mg dose are these: hair loss, water retention, headaches and /or migraines and nausea. I hope that these symptoms will improve in the coming weeks. Until then, I’ll just have to learn how to manage them the best I can.

On a positive note, I have been feeling better. While I am not even close to ‘running road races’  I am doing more than I have in the past. So far this week I have read quite a bit, played with the dogs almost everyday (and yesterday I did agility with them for 30 minutes), I climbed three flights of stairs without feeling dizzy and started work on another painting. I have also felt well enough to do some reflective thinking.  

I have noticed that as I have gotten sicker these past five years, my taste in music has shifted from classical and opera to fluffy pop music. I was channel surfing last evening and came across a science program dealing with music and its effect on brainwaves. It was fascinating watching the MRIs and CT scans show changes in the brainwaves of those who immersed themselves in classical music. Their brains showed a distinctive change from chaotic to organized. I decided that since my brain fog seems to be clearing a bit I would see if returning to listening to classical music would speed that process along. I am trying to listen to one to two hour(s) of classical music every day. I plan on keeping a log to see if thinking becomes easier with the music therapy.   

I also have decided that since I am so deconditioned from my years of illness I am going to try to do a few minutes of mild activity two or three times a day. I am also going to try exercising one group of muscles at a time while I am seated to see if I can strengthen them without causing a PER (post-exertional relapse). I am keeping a log of this too and we shall see how it goes.

Overall – I am enjoying my Ampligen experience. That may sound bizarre coming from someone whose blog is filled with sentiments of crushing bone pain and intense illness, but I am really learning quite a lot about myself. It seems to be an annoyingly true fact that personal growth comes from struggle and pain. I just wish the struggle were easier and that pain was optional.

Sophie

ps> There have been some intersting developments in the world of ME/cfs research recently. These links will take you to some reserach into a possible cause of ME/cfs. While more work needs to be done and many studies have yet to be validated, the idea of a Dorsal Root Ganglia (nerve bundles along the spinal column) infection by a herpes virus (possibly VZV) is quite exciting.  

To read more check out Cort Johnson’s essays on Phoenix rising here: http://forums.phoenixrising.me/content.php?446-Light-on-ME-CFS-I-Bad-Reception-A-Key-to-ME-CFS-Uncovered-The-Light-Gene-Expression-Studies

To read another study done in November 2009 by Dr. Shapiro: http://www.ncbi.nlm.nih.gov/pubmed/19520522

 

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