Monday, January 25, 2010

My Ampligen Treatment Begins

Treatment #1

The adventure begins.

I arrived at the Doctor's office a few minutes late because of bad planning on my part, so I was a little stressed to begin with. It took them about a minute to get me set up in a nice reclining chair in the "infusion room" and when Gwen took my routine vital signs (blood pressure, and pulse) she commented: "So, you're a little excited today, eh?" and smiled. Apparently my BP was a little high, but her attitude mitigated my need to ask further questions, or do my usual "journalistic interrogation."

Gwen, the nurse practitioner who actually does the infusions, calmly went over the procedure, explaining how the first couple times they were going to give me less than the full 400ml of the "drug", and work up slowly. Today's infusion was going to be 200ml, dripped at a relatively slow rate which would take 60 minutes. Gwen explained that soon I'd be up to 400ml and it would only take 30 minutes.

The cool thing was, both for protocol purposes, and because this office is very patient-centric, Gwen stayed with me in the room the whole time. I"m sure as "the new guy" they wanted to see if I'd react negatively to the drug immediately, or display any side-effects. She also mentioned that some people get quesey just with the idea of a needle going into their vein. It turns out someone did-and almost fainted! But it wasn't me.

For the purpose of this blog, I had asked my precious wife to grab my camera and take a couple shots. Bad idea. She hates blood and needles, and actually had to leave the room right after the photo above was taken.

As soon as the infusion began the Doctor came in, jolly as ever, more enthusiastic than the late Chris Farley's version of a motivational speaker dropped into your living room.

"Hey guy! How ya doin' today?" the doctor beamed. But unlike the fictional "Matt Foley," this positive personality was for real, and from the heart. One of the things that prompted me to finally come to this town and start this treatment was the Doctor himself, who genuinely loves to help people, and takes time with his patients.

After chatting a while, I noticed that he was also, very subtly, checking my body out very passively for who knows what. He looked at my arm, the bottle, the drip rate, never breaking stride or stopping talking, all very calmly. But my mind started to race. "What is it he's looking for?" I thought to myself. "A rash on my skin? Blood coming out of my ears? An extra nose spontaneously growing out of my face?" When the Doctor said "OK, you're looking good. Talk to you later!" I figured that things were going as planned.

Exactly as Gwen had predicted, 60 minutes almost to the second after we started, the Ampligen bottle had been emptied into my vein. "Do you sense anything different, any side effects at all?" she asked.

"No, except I feel like sneezing" I said. "And my eyes itch."

"Well, I'll need to write that down." Gwen responded.

"Wait!" I said, remembering the last time I had given my Doctor a hug. "He has cats! I'm allergic to cats, and I just rubbed my eyes after shaking the Doctor's hand!" I said.

"Well, that's not the Ampligen" she replied, smiling. That's those felines he loves so much. Here's a tissue."

Exactly 90 minutes after arriving, my wife and I were leaving the office, me feeling no different than when I first arrived. She on the other hand, was still sort of pale looking, and said "I never want to see them sticking your vein again. I almost fainted. Sorry honey."

So after 1 treatment, I can say that so far, so good. And if the only side effect of getting this infusion is it makes my wife quesey, I can live with that!

In future or separate posts I'll include details about the first 5 weeks leading up to this day, the blood tests and paperwork and interminable waiting that is required to get Hemispherx, the maker of Ampligen, off their asses. But because I wanted this blog to be very specific about the treatment itself, I decided to start the story concurrent with the first infusion.


  1. I am married to a person with ME and I have been looking for a current journal about this treatment. Keep it up...I'm reading!

  2. Looking forwards to hearing the story of what lead up to you sitting in that room.

    I wish you the best of luck with your new treatment. It is very exciting to be starting something new that has a lot of promise and I hope you see the benefits of all that it can hold. :)

    Have a beautiful day, Lisa

  3. The best of luck for the treatment!

    I will keep reading your blog. Thank you for letting us be a part of the experience, many people's hopes focus on this drug.

    All the best

  4. I am really enjoying your blog! My Dad has CFS and I look forward to finding out more about how well the treatment works for you!
    Have a blessed day!

  5. Best of luck with your treatment. I enjoyed reading your blog and look forward to future posts!

  6. Thanks for all the encouraging words, friends. Yes, in future posts I'll interject more background about my symptoms, ups and downs, and what after 5 years of resistance led me to finally move and come to this place. Please keep the comments flowing, they really help me focus. God bless you!

  7. Hey Kevin,

    I enjoyed this post! I am very interested to follow your story in the future.

    Thanks for dropping by my blog and for your kind comment.

    : )

  8. Thanks Kevin, very much appreciated and will be following. Good Luck.

  9. I'd also be interested hearing why you chose Ampligen over Rituximab. Ampligen's been around for longer?