Written by Kelvin Lord
(Kelvin continues his evocative portrayal of his Ampligen treatment and his experiences with ME/CFS. Check his blog for more entries)
I don’t want to say that getting a needle stuck in your arm is getting routine, but a nice short summary of this morning’s Ampligen infusion would simply be “speed.” Because I have now tolerated the full dose twice last week, nurse Gwen ramped up the rate of my drip today and got the whole 400ml into my veins in less than 35 minutes. Including taking my vital signs, charting my progress, and the rest, the entire process took no more than an hour this morning! And it felt no different than when it was going in slower last week, thank God.
Many have asked about the financial aspects of my decision to come to this country to start the Ampligen treatment, so I’ll jump to this important $ subject now.
Are you the kind of person who likes to yank a band-aid off quickly, and get the pain over with? If so you won’t be quite as shocked with what I’m about to tell you. This decision cost me big time. I won’t go into the intangible costs to family, business, and one’s psyche, because the money alone is enough to drive you to your knees and ask “Are you sure, God?” There is a page on Wellsphere that talks about the “Ampligen Cost Recovery Program” and features some of the Doctors in the USA and Europe that offer it, but let me cut to the chase. I calculated that I would need $50,000 to come here and live for 6 months, pay for the Ampligen itself, as well as the clinic fees.
Gives new meaning to the term “recovery”, no? You may be saying to yourself, “Well, I don’t have a spare $50K lying around!” And neither did I. But over the past 5 years, the more I deteriorated in measurable, noticeable ways (see my previous posts) the more I began to have a subtle change in my mindset. A change that got me to the place where the money, while outrageous, was still something I could get over. Or, better said, something I could figure out.
In a word, the sicker I got, the more I started thinking about survival. In a 5 year period I had gone from being frustrated with my decreasing, reduced lifestyle, to actually being concerned about my life in general.
You know we are all great at coping and convincing ourselves that we can get along with all these horrible symptoms, and I was probably the “king” of denial in that regard. And because I had jobs and people I was responsible for, and no bank account with $50,000 just sitting there, for 5 years I basically just, well, gutted it out. Thinking all the while that a half-assed me was OK. That me in pain, working part time, was alright.
But then one day, these subtle nudges came to a head, and I realized the truth. I was seriously going downhill. I wasn’t even able to work part-time very well at all. It was during a Christmas celebration in 2008, when I couldn’t even sing one Christmas carol, so excruciating was the pain in my head, that I snapped. On that day, something clicked. I decided that my life was at stake, and that in survival mode, you do anything and everything to live. Including giving up dreams, moving 10,000 kilometers away, and even selling things or taking out a loan if I had to.
On our ride back to our apartment after the event, still in agony, I cursed, screamed, and pounded the dashboard. I cried and said to my wife, “I’m not sure I can do this anymore!” Steady, solid woman that she is, she calmly said, “well let’s pray, and then let’s figure out what to do so you can.”
There is a great line in the classic 1979 movie “The In-Laws” where Peter Falk, a CIA guy, is explaining his job to Alan Arkin. “Yes, being a spy is dangerous” he says, “but the CIA has a great benefits program. Of course, the secret to the benefits plan is not dying.”
The change in my mindset that Christmas day allowed me to actually consider radically upturning and changing not only my life, but that of my family and friends as well. It was a mindset that went from “surviving this sick life” to “fighting for my life.” And at that moment, to be honest, the money didn’t seem so important. You see, as Peter Falk pointed out, if you’re dead, it just doesn’t matter.
Once I had my “head-game” fixed, it was relatively easy. I recalled, like most people my age, that I had done these crazy financially “unsound” types of things before…when I started more than one business from scratch; when I left home at age 17 to follow my career dreams as a youth; when I worked three jobs to pay for my daughter’s education. I had sacrificed before, and it always worked out. Besides, I figured if I was healthy, I could make that $50K back in about a year, if I stayed in the USA. “But the key was not dying.”
Do I think the medical system in the USA and other countries is whacked out? Yes. Would I feel comfortable telling anyone that a bottle of Ampligen costs $1200 a pop? No. Most wouldn’t understand. Although the fact is, in comparison to HIV and AIDS medication it’s cheap.
But do I gladly pay this money, until such time as it is officially approved, and do I thank God for Hemispherx and Dr. Carter and this amazing drug? Absolutely. Like the CIA, it’s not perfect. But once you decide about the “not dying” part, the benefits are great.
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