This disease and this medication are both full of surprises. I don’t know if it was because I did so much after infusion number 8, or if I caught a little bug, or if it was for no reason, but infusion number 9 induced a reaction similar to my one and only attempt at the 400 mg dose. I have felt so ill. I have still managed to play with the dogs, although it has been more out of not being able to tell those hopeful brown eyes “not today” than it has been the desire to pitch a ball or frisbee around the yard.

These are my symptoms (at the  200 mg dose):
Lymph node swelling
I have walnut sized lumps on both wrists, my neck has grown 3″ in diameter with the swelling, my sternum has a lump measuring about half of a medium apple. The other lymph sites are also affected, but not to the extreme that my wrists and chest are.
 
Pain –
I don’t think I have ever hurt this much for this long. On top of the usual fibro. pain, and now the insane lymph pain, every muscle is screaming with pain and stiffness and every joint hurts to move. The headaches and migraines are intense. The worst pain though is the bone pain. I never knew the inside of bones could hurt. After much Googling, I found that chemo. patients who complain of bone pain can sometimes find relief from bone pain by taking Claritin. Thank heavens the Claritin works. It reduces the bone pain from a 9.5 to about a 5 or 6. I am in about a 7-8 pain range most of the week. I can’t take any NSAIDs because I am mildly allergic to them. All I have is my Claritin and my Tylenol.
 
Fever
I usually run at about 97.9 (or lower). However, for the 48 hours after every infusion I am up at 100 and sometimes 101. I soak my sheets every night. I get dehydrated and I just don’t feel like drinking since my throat hurts so much I can barely swallow.
 
Spine and Neck
I have been through severe flares before and had my spine and neck hurt, but this feels like the spinal fluid pressure has increased to the point that it is shoving my vertebrae apart. I can’t sleep on my back and sitting hurts. Of course, with the lymph swelling I can’t sleep on my tummy either.
 
Hair loss
I am loosing a handful of hair a day. I have been doing this for 3 weeks. I have lost hair at this rate about 7 years ago when I had my worst cfs/me flare ever. I don’t think I will actually go bald since I did not go bald 7 years ago, but my hair still got amazingly thin. I didn’t know that I was going to lose this much of my hair with Ampligen. I would go bald to get better. I just don’t want to.
 
I am only keeping my head above water because of the support of my family, the support of my friends and my faith. One story of faith that has sustained me greatly over the past month is the story of my Great-great-great grandfather.
 
  He and his wife and two young sons immigrated to the USA from England in March of 1855 . Great grandpa was an avid writer who enjoyed writing in his journal daily. He recorded in his journal that it took six weeks to reach Philadelphia from Liverpool. Great grandpa and family then traveled by train to Pittsburg, then steam boat on the Ohio River to St. Louis. They joined the Richard Ballantyne Company and went to Mormon Grove, near Atchison, Kansas.
 
  There was an outbreak of cholera on the day they arrived and the morning after their arrival Great Grandpa awakened to find his beloved wife had died in the night from cholera and exposure. His two sons were also sick with cholera and he also contracted the disease. After burying his wife early in the morning, he loaded up his wagon and began marching westward again. He walked all day. Late that evening, his younger son succumbed to cholera. He walked the many miles back to his wife’s grave and placed the baby in his wife’s arms. He then returned to the company just in time to begin the next day of walking. 
 
  He did not write in his journal for 6 weeks. When he did write again, he wrote two words which have inspired generations of his descendants “Still moving.”
When I feel I can no longer move forward physically or emotionally I remember those words and find the courage to go on.
 
  This Ampligen is giving me a small opportunity to leave a legacy to my descendants and I hope they will remember that I too am “still moving.” 
Sophie     
 
 
 
 

 

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