Friday, February 19, 2010

Congratulations. You Feel Like Crap!

Treatment #8

Today is my first month's anniversary with Ampligen, and my body celebrated by manifesting all the signs that it was working - feeling like I had the flu. I say that only half in jest, because my Doctor confirmed last night that,  after seeing patients on this drug for the past 20 years, it is a validation -  if you don't show flu-like symptoms in the early stages, something is amiss. "Congratulations!" he beamed. "That's good news. The drug is working." So with my eyes fuzzy, my head hurting, my bones aching and my stomach a little quesy, I forced a smile and said,  "All right! I'm so glad I feel like crap right now!" 

I guess it's sort of like exercise. I remember in College long before I got sick, after doing my first weight-lifting workout as a skinny adolescent, and waking up the next day with everything hurting.  I' was so shocked! I mean I could understand my biceps and glutes hurting, because we had done those exercises. But that day my elbows, and my ears, and even my ankles ached! My trainer just smiled and said the famous gym-phrase "If it ain't hurtin, it ain't workin!" and went on to add that the muscles all over my body had to adapt to these new stressors, in order to build back stronger. He actually liked it that I felt so horrible the next day.  That I had to walk around campus like a 90 year old man all week, saying "ouch" with every step just made him more pleased.

Such is the world of Ampligen. It may seems incongruous, but the genuine grin on my Doctor's face last night when he heard I felt like crap was not because he was a was very appropriate here. Other patients have told me the same thing, that "flu-like symptoms" after infusion is a good sign. But there are other good signs that I've started to notice.

Good sign #1- I'm dreaming again! 
I can't tell you how long it has been since I've awakened from a night's sleep with the memory of a dream I'd had. Now I have memories of 3, 4, even 5 deeply profound dreams, almost every night. Especially on the night after I get the drug infused. Most are quite entertaining. Last night I was on a Navy Aircraft Carrier, and had what seemed to me to be about 3 day's worth of adventures with the Navy Seals! In recent dreams I have had hilarious arguments with movie actor Randy Quaid, (why I have no idea!), have revisited long-forgotten events from when I was only 3 years old in dreams, and have been to Russia. Pretty wild, no?

I used to dread the nights, for all the sleep problems I'd had. Now going to bed for me is actually as good as going to the movies.

Good Sign #2 - My employees are engaging me again!
Because my business can be done over the phone and internet, from all parts of the world, my moving to the USA to come here to this clinic really didn't change the way I did my job. But one thing already has changed.  The way my staff and I are relating, and working on more projects together again.  I'll confess, even though I tried to be a good leader, the sicker I got over the past few years, the less I was able to do, well. So two things resulted. I ended up doing less, and they began to involve me less; by necessity!

Let's face it, loving people do loving things, and when my team knew I had a headache, didn't sleep for 3 days, or could hardly form cogent sentences, they tried to leave me alone. I appreciated them for that, but over the past few weeks, that has changed. Sure, I still do most of my work horizontally, lying in my bed with my laptop. But now my brain seems to be able to handle more. I haven't arrived yet, that's for sure. But I can tell you that I am probably 20% more productive than I was 3 months ago.

Good Sign #3- My appetite is back!
Even people without M.E. will tell you, when you are sick, when your body aches, when you are depressed and you don't sleep, you often just don't feel like eating. Because my challenge was complicated by intestinal parasites I picked up in the tropics, I was taking anti-parasite medicine that also contributed to the lack of appetite. My wife would cook the most amazing meals, and I'd just stare at the plate. By the time I arrived here 2 months ago, I was like 30 pounds underweight. But that all changed a month ago. For the past 4 weeks, actually beginning with my very first infusion, there's been a new sound coming from my belly...hunger pains! Plus a desire for food! And I have gained 5 pounds back already.

Good sign #4- I have slightly more physical energy! 
This one is easy to measure, because when I arrived in this country at the Miami International Airport over 2 months ago, I could hardly walk for more than a couple minutes. That is one wicked airport for sick people, I'm telling you. I guess there is some Spanish law brought from Cuba that prohibits moving sidewalks in MIA, so to walk from the plane, through customs, to our bags, required me to stop and rest about every 3 minutes. This morning, I spent 25 minutes in the gym, doing light exercise, resting about every 8 minutes or so, but completing my little routine. To Arnold Schwarzenegger that may be child's play. But to me it's significant. I am seeing my physical energy slowly return! No, I still couldn't spend a day at Disneyworld, that would be way too much. But I bet I could make it through Miami Airport a lot faster today!

CORRECTION: In a previous post I misstated the cost of Ampligen. The correct number in the "cost recovery program" for the drug itself is $1200/month, which represents 8 infusions given two times a week for a month. My rough estimate of planning for an investment of $50,000 may be a little high, but includes the additional doctors fees, and equally important, the cost to live here. My 1-bedroom apartment alone runs around $2000/month, so with transportation and the like, you can see how the numbers add up. In accounting terms, it's not the drug itself that is the major expense, but the relocating and living in new place in order to get the drug that adds up. Hope that clarifies it.

As always, questions and comments are what keeps me posting. Thanks!


  1. Dear Kelvin,

    thanks for this blog. I am reading it with great interest.

    I wish your improvement on Ampligen gets bigger every day.

    Is there the possibility to send you an email?

    Best regards

  2. Thanks for the comment, and encouragement. Probably the best way is to go the ME/CFS site below, where they make emailing easy.

    You'll have to sign up, but it's a simple user and passcode situation. You can find my blog there as well as send emails to any members.


  3. hi Kelvin,

    i'm from Singapore, i wish u all the best and take care :)

  4. I actually have nightmares all the time since getting ill and remember them vividly when I'd actually prefer to not dream at all and not remember them. Weird how we all have different experiences. Also, since getting ill I am starving all the time and have met others with this problem, only females though, we tend to gain weight.