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Learning to Fly Again

View attachment 2071I 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 . ) 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 Treatment Begins" 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 . It motivates me every time I see it and hear the Foo Fighters music. I hope it does you too.



Kelvin Lord
Enroute to the Rockies

Comments

I am SO happy for you!!! Usually I do get down when some one is able to afford things to get well that I cant. Your blog posts have given me hope though!! Thank you SO very much!!!

FLY!!!!!!!!
 
The difference with you Kelvin, is that you show compassion to others and anticipate how they must feel. Or might feel and all that is banished because you do that. You deserve this. You deserve to feel good and celebrate. I am so happy for you. GO FLY!! I love the Rockies. Enjoy and ski and live your life. You deserve that.

Question; does this mean you are done with Ampligen and these viruses..immune system will not sink again? I am not being pessimistic, I just wonder if you know whether this will last? Have they informed you of the prognosis long term?

Kelvin, great job and enjoy! I am not so sure I could deal with the before part, of being on the Ampligen. Sounds tough, but you are tough and came out on the other side!
 
Thanks for the kind words, friends. If they give just a modicum of hope, I've succeeded.
Spitfire, the answer to your question is, yes, I am done with Ampligen. I did a full year protocol, never missed one infusion in 12 months, every Monday and Thursday. As to how long it will last, my hope is, the rest of my life. I spoke with no less than a dozen former patients who were on Ampligen, and most of them have been doing well for years. Kim Phillips was in the first trial in 1991, and now 20 years later, she is still working a full time job M-Th every week. She rides horses on her long weekends. Steve is a golf pro still good after 7 years I think. Part of the discipline in staying healthy I believe is in maintaining the good pacing and dietary habits I adopted on Ampligen, and not putting my immune system in a bad place. It is for that reason that I decided not to go back to my toxic, polluted home country in South America, and instead will spend the next year in Colorado. But ask me again how I'm doing in 3 months, OK? I promise as always I'll be completely honest. Thanks!
 
Kelvin that is GREAT news. Well done!!! It does give hope - thank you. I look forward to hearing all about your airborne adventures ...
 
wow Kelvin. that is so wonderful. I have contacted Hemispherex about their Phase 4 trial.
am in sacramento and would go to Dr Peterson. I have been sick so long and am primarily housebound. I am not sure how Ampligen would be for e long timer, but I feel like it is worth the risk. Thanks for posting your journey and updates. There are many of us out here, coping but not living. For sure, it ain't easy.

best wishes,
jj
 
Congratulations on your success with a year on Ampligen & regaining your health & optimism for a bright future.

I know it wasn't an easy year - for you or your family.

Loved the YouTube video you put together. Great song & inspiring visions.

And no matter what the future brings, stay positive & eat well. There's no doubt in my mind, that patience & positive thinking makes the world of difference in life.

Best Wishes for the future year in the Rockies - sounds heavenly.
 
Great spirit. Great writing. Great story.

Thanks for sharing it.

Keep us posted on where and what you are skiing.

I love Colorado, and I love the slopes, and I hope to join you there sometime soon.
 
You made it, it was worth it, now go fly you deserve it. Pleae keep us posted. I have enjoyed reading all your blogs, so inspirational!

Loved the video!
 
You've provided hope in so many ways

hope for Ampligen
(hopefully it will finally get over the hump this year and get approved, thus lowering the price and bringing the Insurance companies in)
hope for the Science - the success of Ampligen is so meaningful for ME/CFS to be treated as a legitimate disorder
hope for patients - seeing your success provides hope for everyone that they can get better

Congratulations!
 
I wish for you a lifetime of flying -- both in the air and in your wonderful spirit. You go, Kelvin!
 
Fantastic you've got so much of your life back Kelvin!...:) More good health to ya! Cheers!
 
Kelvin,

When I met you at the clinic for my visit of just one day last fall, I got a glimse of the war. Twice a week for a year sitting with a nurse that monitors you as the drug goes in. No matter how nice the nurse is, that's a major drag. Here's to you and the other BRAVE ones who fight this battle out.

And here's to back flips and beautiful Colorado. Many congratulations. We wish you and your family every happiness.

R
 
As a Patriots fan, I am of course deeply, deeply offended but your little Jets story...; ) But thrilled by your progress and return to the land of the living. Congratulations and keep us posted on how your are doing,

JAH

p.s. I guess neither of us will be watching the super bowl...
 
As a Patriots fan, I am of course deeply, deeply offended but your little Jets story...; ) But thrilled by your progress and return to the land of the living. Congratulations and keep us posted on how your are doing,

JAH

p.s. I guess neither of us will be watching the super bowl...
 
Congrats Kelvin!!

If your Colorado town happens to be mine, Boulder, drop me a PM. Your post cheered me up- hope for us all! I am now going to take a closer look at ampligen for myself. Take care and happy living!
 

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Kelvin Lord
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