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I think I have finally hit another bench mark of health. For the past three weeks I have actually been able to depend on my body. I am learning to feel the difference between when a little push will set me back and when a little push is all I need to get quite a lot done.

Most weeks I am out of the house nearly every day. And when I do go out I make several stops. I am finally able to compile a list of things that need doing (within reason) and do them all in a single trip out and about. About one-quarter of the time I am able to return from shopping and do household business such as: making dinner or doing some cleaning.

Side effects vary from infusion to infusion. For example if I have done nothing but rest prior to the day of infusion I can expect to feel almost normal (except for some additional pain, nausea and tiredness) post-infusion. If, however, I have had a busy day prior to infusion I can expect to be flattened by every major side effect I have listed in prior posts within two hours of finishing my Ampligen. I really try to mitigate my activity on the days preceding infusion. I don’t always succeed, but at least I try.

I have successfully ‘re-upped’ with Hemispherx and I am moving into my second six month period. (That said my six month anniversary won’t actually occur until December 7th.)

I am still on my dose of 50 mg Ampligen twice weekly. It seems to do the job just fine for me personally.

I am looking forward to the holiday season this year more than I have in a long while. I’ll actually be able to participate in all (or at least most) of the family activities.  Compared to past years of being bedridden, sick and saying “you go on without me” this year is going to be glorious.

I hope your holidays are wonderful.

Sophie

 

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I am making progress. I hit two major milestones thanks to Ampligen this week. The first is that I managed to go out to more than one store in a single trip. I made it through three stores in one day! I was out for two hours. I did come home and feel less than stellar, but I did it. With a nap and some Tylenol I was able to have a normal evening without too much increased pain. I was even able to play fetch with the dogs after dinner.

 The other milestone was I was able to make it to church. I didn’t stay for the entire service, but it was the first time I have been in a very long time.  I came home tired, but after a nap and some lunch I have been able to get to work on this blog entry. Pulitzer worthy it is not, but hopefully it is at least coherent!

The bone pain has reduced in severity and duration. I usually have bone pain for about 24 hours after every infusion. 

Nausea is still my constant companion. Occasionally his buddy, the Technicolor yawn, will spend a few hours with me.  

My hair follicles still burn as if each individual hair is on fire, but only for about 24 hours after each infusion (as opposed to constantly when I began the Ampligen). The chemical burning feeling seems to be directly related to Ampligen infusions and hair loss. The more a section of my head burns, the more hair will fall out from that section of scalp.

The main side effect I have had to learn to cope with this week is dreams. What happens when your brain has been wrapped in a velvet cloak of fog for more than two decades? What dreams begin to awaken when the cloak begins to be lifted? And more importantly what the heck can I do about it? 

I know that I have mentioned vivid dreams before in connection with Ampligen, but I never knew dreams could perfectly mimic life right down to the smells and tastes. Dreams are supposed to be images, sounds, sensations, emotions and thoughts experienced while sleeping, but this is almost like living another life. And that life is horrible and frightening beyond imagination.  

Let me make perfectly clear that I do not enjoy violent or scary movies, tv shows or books. If the ending of a book or movie can’t be summed up by the tagline “and they all lived happily ever after,” I usually refuse to have anything to do with it. I haven’t had a tragic or scary real life either. Yet, I have awakened the whole household almost every night this week. I have awakened them with sobs of wrenching despair and piercing screams emanating from sheer terror. Why did I dream things that broke my heart beyond repair? How in the world did I end up running for my life, screaming in terror and soaked in cold sweat? I am not safe whenever I shut my eyes. Dreams stalk my nights and my naps.    

As an added bonus it is nearly impossible to awaken me from one of these new kinds of dreams. When I do awaken, either by being shaken awake by a family member or screaming myself awake I cannot shake off the dreams. I fall asleep and go right back into dreaming where I left off. It is awful to be unable to escape.   

So far I have not found anything to relieve or change the dreams. I can only hope and pray the intensity of these dreams will stop soon. If not for my sake, then for the sake of the other poor, sleepless souls that have to live with me.  

Any suggestions for those of us trapped in Nightmare Land?

Sophie

Treatments #15 and #16:

“The best laid plans often go awry” and “the road to h*** is paved with good intentions.” These two sayings should have run though my mind on Tuesday morning. They didn’t. So what happens when common sense won’t be heeded? Pop media bites you in the backside – as in ‘Ampligen IV – The Ampligen Strikes Back.’

While I had originally intended to only increase my Ampligen dosage by 25 mg – 50 mg I was told that could not be done. I had to go from 100 mg to 200 mg. (I have since been corrected and that is not the case.) However, at the time I didn’t want to make a fuss. So, like an idiot I said “okay, let’s double it!” It was also time for the week eight blood draw.

Thereafter followed a rather scary evening. My temperature which started at a pre-infusion 96.7 degrees farenheit began to rise. Two hours post infusion I was at 98.9 and still climbing. Four hours post infusion I hit 100.  Another hour and my fever rose to 102. My fever continued to rise from there, but the new pressing problem was my inability to consume adequate liquids since my throat and tonsils were so sore I could not swallow. My family was prepared to take me to the ER, but I was too ill to go. All I could do was sit and shake like a giant chihuahua and swallow as much Tylenol as I could safely take. To my great relief my temperature began to decline after midnight.

Wednesday brought a whole basket of delights. I witnessed the return of mind-blowing bone pain, muscle pain, joint pain, lymph node swelling (and pain), spine and neck pain and more hair loss than usual. This was in addition to my usual nausea and food avoidance.

Thursday was a bit more survivable than Wednesday.

Friday I reported my lack of success with the jump to 200 mg. I then promptly dropped back to my 100 mg level. My brief excursion to the 200 mg level made my body ready to attack even 100 mg of Ampligen. I had more pain (bone pain especially) and more swollen lymph nodes than I had previously had at the 100 mg level. 

Several hours after my Friday infusion I got a call from the Doctor’s office. My doctor explained that (luck me) I was experiencing another rare side effect of Ampligen. I have become extremely anemic. I now get to subject my nauseous self to lots of red meat and lots of iron supplements or risk losing the Ampligen because of the anemia.   

The saga (like Star Wars) continues. Will someone please notify Harrison Ford?

Sophie

Sophie’s Typical Week

Sunday: I awaken at 8:30 am. Then I eat breakfast. I watch HGTV and News. I gear myself up for attending a one hour church service. (I make it to church about 50% of the time.) I return home from church and eat lunch. Then I check my email and visit YouTube. I take a  three-hour nap. I watch more tv. I eat dinner. I watch tv. I get to bed at 9:30pm. I am asleep between 10pm and 11pm.

Monday:  I awaken later (9:00 am) on Mondays thanks to the exhaustion caused by attending church. I eat breakfast and watch Good Morning America, The Today Show and The Early Show. Shortly after breakfast it is nap time. I sleep until lunch. Sometimes I don’t sleep, I just lie there and look at the walls and ceiling. Then I get up and eat lunch. After lunch I watch some tv and then take a two-hour nap. I watch more tv. I eat dinner. I watch more tv. I am in bed by 10:30 pm and asleep (usually) by 11:00 pm.

Tuesday: I eat breakfast and watch Good Morning America, The Today Show and The Early Show. I read for 15 minutes. I check my email and visit YouTube. I Google random things. I walk for 5 minutes and strive to do an extra 30 seconds. I take a half hour rest. Then I get up and eat lunch. After lunch I watch some tv and then take a two-hour nap. I watch more tv. I eat dinner. I watch more tv. I am in bed by 10:30 pm and asleep (usually) by 11:00 pm.

Wednesday: I eat breakfast and watch Good Morning America, The Today Show and The Early Show. I read for 15 minutes. I check my email and visit YouTube. I Google random things. I walk for 5 minutes and strive to do an extra 30 seconds. I take a half hour rest. Then I get up and eat lunch. After lunch I watch some tv and then take a two-hour nap. I watch more tv. I eat dinner. I watch more tv. I am in bed by 10:30 pm and asleep (usually) by 11:00 pm.

Thursday: I eat breakfast and watch Good Morning America, The Today Show and The Early Show. I read for 15 minutes. I check my email and visit YouTube. I Google random things. I walk for 5 minutes and strive to do an extra 30 seconds. I take a half hour rest. Then I get up and eat lunch. After lunch I watch some tv and then take a two-hour nap. I watch more tv. I eat dinner. My three best friends come over to watch a movie. It is the highlight of my week. I am in bed by 10:30 pm and asleep (usually) by 11:00 pm.

Friday: I eat breakfast and watch Good Morning America, The Today Show and The Early Show. I read for 15 minutes. I check my email and visit YouTube. I Google random things. I walk for 5 minutes and strive to do an extra 30 seconds. I take a half hour rest. Then I get up and eat lunch. After lunch I watch some tv and then take a two-hour nap. I watch more tv. I eat dinner. I watch more tv. I am in bed by 10:30 pm and asleep (usually) by 11:00 pm.

Saturday: I eat breakfast. I read for 15 minutes. I check my email and visit YouTube. I Google random things. I rest  for an hour or two in preparation for a cold shower. I take a cold shower (I can’t wait for the day I can hop into a hot shower again and not faint). I have my hair brushed for me – I cannot do it myself. I eat lunch. After lunch I take a two-hour nap. I watch more tv. I eat dinner. I watch more tv. I am in bed by 10:30 pm and asleep (usually) by 11:00 pm.

The Top 10 Things I Miss Doing:

10. Being able to stand up and sing in the church choir.

9. Styling my hair.

8. Hot, daily showers.

7. Baking.

6. Cooking.

5. Rough-housing with my dogs.

4. Exercising and really working up a sweat.

3. Doing things with friends and family.

2. Being outside the house.

1. Walking for more than a few minutes at a time.

I don’t fix any meals for myself aside from pouring a bowl of cereal. I don’t do laundry. I am lucky to get in one cold shower per week. I can’t comb my hair. I don’t drive. I leave the house once a week if I’m lucky. I never clean anything (which is hard for a neat-nick like me). I talk on the phone once every few weeks – and even that is hard. I can’t sit comfortably in upright chairs. I need to recline on the sofa or love seat. Every couple of weeks I have just enough gumption to thwap out a few lines about me and ME and post it here.  I hope and pray with everything in my soul that Ampligen will give me a little more freedom. And in my heart of hearts I pray for miracles.

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