Tuesday, January 18, 2011

Learning to Fly Again


I did it! The year on Ampligen is over, and I'm about to burst at the seams. Would you join me now in celebrating my victory? 

If you watched the NFL playoffs this past weekend you saw the New York Jets doing on the field what I have felt like doing all week - literally doing backflips for joy. I mean, these players were so happy, they were getting airborne like circus acrobats! Why? Because they defeated a so called "invincible" enemy - the N.E. Patriots. (To see a clip of the Jets flying and flipping go here. )  Those players weren't saying "look at me." They were saying with their somersaults and handsprings, to all the other NFL teams who had gotten punched in the mouth by the Patriots, "Look! Those guys are not invincible. It was a war, but they CAN be beaten!"

And make no mistake, the Ampligen protocol is very much a war. 
  • It's a war against a supposed "invincible enemy" that invaded my body;
  • It's a war against the "belief" that I am destined to be sick forever;
  • It's a war against doubt and fear, as the treatment itself can be worse than cure for many months.
As those of you who have been following my blog and adventure the past year know, for the entirety of 2010 I basically put my and my family's life on hold in order to move to a US city to receive 12 months of the "trial-drug" Ampligen. There is a good reason this medicine is defined as a "trial" - because it was one of the hardest things I've ever been through. 

By suffering from M.E. you understand what a "trial" is. Ampligen makes our normal trial even worse for the first six months. In addition to being pricked twice a week and feeling like you have a horrible flu for about 6 months, from the drug and virus reaction to the drug infusions I've experienced sciatic nerve tremors, diarrhea, constipation, temporary vision loss, muscle aches, depression, loss of libido, loss of energy (what little I had), and a lot more.

During this trial I found out I knew curse words in languages I don't speak, and my wife learned when to stay away from me on bad days simply by watching my eyes dilate. If you really want the good bad and ugly details start with my first infusion report here on The New Ampligen Diaries and read through the year's "trials." 

But despite all those physical side effects, and the concomitant emotional side effects, today as the battle draws to a close I have to say yes, it was worth it! Ampligen delivered as advertised! Although I don't have all the tests results from the clinic, by family's and co-worker's measurements, along with my own personal report-card, I am probably 70% better! We have a saying at the clinic- "Ampligen doesn't cure you or fix everything, but it gets you close." To see the before and after report card scroll down to the bottom of this earlier post

But in short, after arriving here one year ago so sick I was barely able to walk, after one full year of Ampligen, today I am able to...
  • do my job about 6 hours a day (from my laptop, on the phone and Webex with my staff around the country), 
  • go to the gym and do a 45 minutes a day in resistance exercise, 
  • go to church every Sunday, and stand a long time,
  • even be funny occasionally. 
I no longer have canker sores in my mouth, no more swollen glands, no more brain fog, and I even went to an NBA game last Thursday night and stayed for 2 quarters! My orthostatic intolerance has almost disappeared completely.

Yes, I still get tired by late afternoon, and but if I remember to get horizontal often during the day, even just for 10 minute bursts, I get new wind. Yes, my leg muscles do sometimes get sore, but nothing like they used to, and no more restless legs at night! 

All in all, the reward I am experiencing now was worth the risk.

In that regard, by writing this post, I know I am risking hurting some of my fellow sufferers feelings, just by reporting the good news. I remember how bummed out I got a couple years ago when I read the testimony of a man who was completely healed of M.E. through an advanced anti-viral regimen in Europe - drugs that I had no ability or resource to get at the time. It made me feel all the more sick that day; and down.

Please understand my motivation here. I am neither trying to make you feel worse, nor lobbying that you follow my path and try to get this drug. I promised my followers and readers to tell the whole story, from beginning to end, in complete candor. To be honest, when I started I expected to be an apologist AGAINST Ampligen. I was fully prepared to blow the lid off of a scam. Or even die. But in my case, it wasn't...and I didn't!

That it turned out so well is something the journalist in me mandates I report, to give you some data. But more importantly, that it turned out so well is something the empathetic patient in me forces me to relate, to give you some hope.
  • Hope that these hideous bugs and pompous pain provokers can be stopped;
  • Hope that maybe very soon, there will be drugs affordable and more readily available* to all that really work;
  • Hope that these viruses, this enemy of ours, is not invincible.
Like the NY Jets, I'm saying, "Look, these viruses might have punched you in the mouth like me for years...but look! They can be beaten!" 

Now I embark on a new journey. A journey where I learn how to live again. In order to "seal" my healing, I'm staying in the USA a awhile more. I'm moving to a Western town near the Rockies not only for the clean air and non-toxic environment, but because of its proximity to things I used to love to do.  Many of you know before I got sick I was pretty adventurous. I flew aerobatic planes, was a flight instructor, won some awards soaring in gliders, and loved to ski and parasail. 

I'm not sure I'll actually be able to do all these sports again, but I'm going to give em a shot. Because all of these sports have one thing in common- done correctly, you don't need the energy of a teenager or the strength of NY Jet to get airborne. You just have to know how to use gravity to your advantage. 

So I'll be spending the next year or so learning how to fly again, with my new body. I promise I'll keep you posted on my progress, and as always, the times I mess up as well as the times of victory. 
 
As both a victory celebration, and a vision for what I hope to be able to do again this coming year, I've put together a 4 minute You Tube music video entitled Learning to Fly Again It motivates me every time I see it and hear the Foo Fighters music. I hope it does you too. 

video




Kelvin Lord
Enroute to the Rockies


*I'll have some exciting news about this in my next post.













13 comments:

  1. so, are you cured??? YES or NO...that is all i am asking...sincerely aidan walsh southampton, u.k.

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  2. I am probably 70% better! We have a saying at the clinic- "Ampligen doesn't cure you or fix everything, but it gets you close."

    Aidan, a virus or retrovirus stays in your body forever, so you are never "cured". But I'd take 70% better any day!

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  3. Kelvin--

    I am considering moving to NYC to be in the next ampligen trial, and honestly I'm scared shitless about the decision and the move. Would you ever want to talk to me about it? My email address is Kansas.Lee@gmail.com.

    Thanks so much, for maybe getting in touch with me, and for keeping this blog.

    Take care,

    Lee

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  4. Great blog with very honest insight. How are you feeling now? Any plans for an update blog posting?

    Thanks

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  5. Hi,

    How did you manage to get into the Ampligen trial? I have tried to contact Hemispherx Biopharma via e-mail few times, but they haven't responded. At first I thought they aren't interested in foreign participants, but then I found your blog and realized that you have come to U.S from half a world away.

    If you can give any advise how to get into those trials, could you please contact me. My e-mail address is niemelatimo@hotmail.com.

    Thanks.

    -A very desperate CFS/ME -patient from Finland

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  6. To the post above. You could contact either dr Derek Enlander in NY or dr Charles Lapp in Charlotte directly since they both administer ampligen as part of the trial. It's via them the contact about the trial takes place. Good luck!

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  7. How are you now?

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  8. Hi

    It's been a year since last post, just wondered how you are now Kevin?
    Regards

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  9. Thanks for great information you write it very clean. I am very lucky to get this tips from you.


    Private STI Clinic Glasgow

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  10. My husband has been I'll with ME/CFS for two years now. We live in Canada with little treatment options and doctor support. We are considering doing the same as you, picking up and moving to the US for trial treatment. Thank you for your blog! It is very helpful. Would you be able to comment on your current status. It would help us in making our very dramatic decision to do the move. Thank you kindly.

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  11. Yes, and update on your health, better or worse, would be great.

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  12. Hi - just began reading your blog...i am so happy for you - i do UV Photophoresis treatments in Phoenix for my CFS which basically is also completely under-utilized, it has the same basic principle as immune modulating drugs...i found writing extremely helpful too - wishing you continued success. www.chronicfatiguechronichope.blogspot.com -
    i too feel guilty b/c i have seen great improvements and my treatments are out of pocket expense and very few people in the country do this...used extensively in Europe - all the best. hd

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  13. Hey, stumbled upon your post while googling about ampigen in America.
    I myself have been living with CFS for 11 years now, and here in Europe (Amsterdam more specifically) we have nothing like this. It gives hope for the future that there are things that actually work!
    And then you end it with a video with music from my favourite band, I just had to comment.
    Going to read more from your blog now, thank you for sharing all of this. It really does give a person hope for the future, so thank you for that <3
    Love from Amsterdam

    ReplyDelete