Thank heavens that someone invented narcotic pain relievers. After finishing my last blog, I was still feeling fairly okay so of course I did more things. In fact I kept doing things all weekend long (yes, it was an “oops I did it again” kind of weekend). I wanted either a shotgun or morphine by Monday evening.

Here was what my weekend was like: (Keep in mind that on May 22nd my typical week consisted of watching tv, sleeping, napping and playing You Tube videos with the occasional church service tossed in. You can read about my boring typical week in My Baseline part 2.)

Saturday: Walked the dogs for 20 minutes, write blog, hour-long phone conversation with friend, compiled a book of things to see and do for a friend’s road-trip, rough housed with the dogs and painted a picture.

Sunday: Walked the dogs for 20 minutes, drew a pencil sketch, job-hunted for my sister, wrote professional cover-letter for sister, talked with three friends for one hour each, updated and cleaned out the computer’s drives, was taken for a long drive, took a shower, washed my hair and painted my toe-nails red.

Monday: walked for five minutes, worked on retrieval training with the Labrador for 20 minutes, made several phone calls, wrote in my journal, worked online, ran errands (stayed in the car), visited my best friend and her family (at their home) and I started another painting.

I think that my issue is that Ampligen delays or stops my PEM symptoms until I have really overdone it. By the time I start feeling the “uh-oh”, the damage has already been done. I hit the full crash head-on. My monday night crash went a little something like this: my muscles ached, my nerves shot fire through me, my lymph nodes swelled up, I got a migraine, my ears rang, I threw up, I couldn’t walk and even if I had been able to I was so dizzy that it wouldn’t have been safe.  Thankfully, Monday passed.

I have started a daily activity log to hopefully keep my activities a little more in line with my current level of physical fitness and illness. I want more active weekends, but Monday was a horrible payback day.

Infusion Number 7: (200 mg)

Fever, sore muscles, brain fog, water retention, joint aches, increased tenderness of lymph nodes and tremendously sore throat and swollen tonsils, severe bone pain.

Ampligen and Bone Pain:

 I have only touched lightly on the  bone pain before now because I was unsure that it was connected to the Ampligen versus the sudden increase in activity level. However, since I had been in bed most of Monday afternoon and evening and did nothing after infusion on Tuesday except nap I am quite sure now that the horrendous bone pain is triggered either by my body’s immune response to Ampligen or possibly the Ampligen itself.

The bone pain is so awful that the narcotics do not touch it. In desperation I googled many combinations of bone, pain, immunomodulator etc. I prayed to find something that would help to alleviate the tremendous pain. I happened on a cancer website that listed the side-effect of bone pain in a drug that promotes the growth of neutrophils (white blood cells). Amazingly doctors discovered by accident that Claritin reduces bone pain significantly in many patients without adversely affecting the growth of white blood cells. I was desperate so with the doctor’s okay I took a dose of Claritin. MIRACLE! The pain was reduced by about 90%. One dose of Tylenol later and it became the easiest infusion day ever. I don’t know why the Claritin works. I haven’t found another Ampligen patient who has complained of bone pain, but Claritin is something to ask your doctor about should you experience the bone pain that Ampligen gives me.

Water Retention Fix: 

I have also added in an additional 50 mg of vitamin b complex to help with the fluid retention caused by the Ampligen. It seems to cut some of the fluid retention without making me feel weak or dehydrated. You should discuss any vitamin supplements with your doctor. In fact I haven’t said this in a while so it is time to repeat it:

“I am not a doctor. You should consult your doctor for any and all questions concerning your health and medical care.”

So far Ampligen is delivering as promised. I am so excited to see what small miracles await me after every infusion.   

Sophie

 

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