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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. Kelvin Lord

    Everything I Needed to Know About Managing My Health I Learned at Disneyland

    The patient didn’t know it, but she was just 60 seconds away from relief. Standing at the doorway to Dr. Goldstein’s office with some PLO-gel glistening from her forearm, she looked disappointed. Marie had been without significant sleep for days, her fibromyalgia and M.E. pain flaring to the...
  2. Kelvin Lord

    Kelvin Lord is Back with an Update

    After 2 years and many requests for updates, Kelvin Lord is back and is posting again on PR. Check out "Having a Regular Day" here on Phoenix Rising blogs and see how it's been going post-Ampligen.
  3. Kelvin Lord

    Having a Regular Day

    The timing of the blindness couldn’t have been worse. It was 5:30AM. I was driving in a new town, on a frozen highway, in the cold pre-dawn morning darkness, when it secretly crept up on me. I had just left the all night pharmacy having picked up a few items on special my wife said wereally...
  4. Kelvin Lord

    Dr. Peterson Talks! On Ampligen, Autoimmunity, Pathogens and His New Partnership

    What a treasure chest of information, Cort. Many times I've thought to myself, "Gee, if I could just get Dr. Peterson in a room with a tape recorder once a month, I'd get not only the most current information on this disease, but the best." You've made my dream come true with this amazing...
  5. Kelvin Lord

    About to start Rx Klinghardt parasite protocol...Any input?

    I had a variety of worms bugs and parasites living in tropical climates south of the border. I read the website "badbugs.com" as well as a number of resources from Australia and Spain. Most parasitologists in tropical climates and 3rd world countries know that a parasite doesn't invade without...
  6. Kelvin Lord

    Article: Phoenix Rising in 2012: Its Promise and Future

    Without Phoenix Rising, the amazing breakthrough stories that Cort posts throughout the year, and the comments and support of people who post here, I probably wouldn't have made it. Three of the most promising treatments I have ever undertaken came to me and my doctors by way of reading PR. Yes...
  7. Kelvin Lord

    Article: Phoenix Rising Joins Coalition of Non-profit ME/CFS Organizations to Produce Change

    Cort, This is great, Cort. As usual, Phoenix Rising is on the front lines making a difference. Thanks for all you do.
  8. Kelvin Lord

    Article: Hope for Ampligen-Breaking News!

    Evangelina, RE: making public the number of users of Ampligen and the results- ah, that is the $64,000 question! Unfortunately, the very nature of a "drug trial" precludes us from getting access to this critical, all-important info until AFTER the drug is approved. While Hemixpherx and others...
  9. Kelvin Lord

    Article: Hope for Ampligen-Breaking News!

    Lannie, although I haven't read the new paragraphs with my own eyes, a couple of the people who were in Florida this past weekend told me that they think Nexavir will STILL be one of the drugs you have to stop to go on the Ampligen trial. Sorry if I poorly communicated that. However there are...
  10. Kelvin Lord

    Comment by 'Kelvin Lord' in 'Hope for Ampligen-Breaking News!'

    Regarding costs, there are two issues. There is the cost of the drug itself, and then there are costs associated with getting the drug--that is, if you don't happen to live near one of the Doctors, then you either commute, or move there. If the trial "expansion" they discuss this weekend...
  11. Kelvin Lord

    Hope for Ampligen-Breaking News!

    I've been sitting on this story for a couple months now at the personal request of a couple physicians who were "on the fence" but I can now share with those who are interested in getting Ampligen, the future might be a little brighter. As you read this currently there are a number of the...
  12. Kelvin Lord

    Comment by 'Kelvin Lord' in 'back on the forums...'

    So sorry about your year, and your crash - but am GLAD you are back! The hardest thing to do is post when you feel like crap, so double kudos to you. Yes, I agree Cort has the quintessential single resource for the most information, given in a timely manner, in an easy to find way.
  13. Kelvin Lord

    Ampligen success rate?

    Somehow I missed this thread till now. Sorry for the delay. I will quote Laurel almost verbatim...for me Ampligen helped immensely. To read my entire year's journey on Ampligen, including moving from another country to go to the clinic to get the infusions twice a week, and all the "challenges"...
  14. Kelvin Lord

    Comment by 'Kelvin Lord' in 'The Absent-Minded Professor'

    I too have high regard for Dr. Klimas- her work, dedication, and willingness to expand her practice recently. And I think that CIGANA has it right...whether you are talking Dr. Lapp, Dr. Peterson, Dr. Bateman, or the rest who are and have been working at this for decades, these Doctors do not...
  15. Kelvin Lord

    Comment by 'Kelvin Lord' in 'Small Stresses that Seem Big'

    Not unusual for those close to us to be completely oblivious to what we go through, Carrigon. And since they don't make the appropriate comments, may I use this short Forum, like Emmanuelle just did, to do so? You ARE brave, Carrigon, not just because you have survived this hideous...
  16. Kelvin Lord

    Article: Empty Sella Syndrome and CFS: A patient study

    Count me in, Cort. I found out just 3 or 4 years ago I have an empty sella. Sounds comical to say it in that way, because as usual the medical terminologists who invent the names for things that afflict us seem bound and determined to ruin our self-esteem. If I say to people "I have an empty...
  17. Kelvin Lord

    Article: CFIDS Association Of America Interview with Jennifer Spotila

    Well said and perfectly articulated, CBS.
  18. Kelvin Lord

    Article: Be-ing and Accepting (Quality of Life Blogs #2)

    First of all, thanks for the laugh. "I accept that I can't accept that and move on." Priceless, Cort. Second- this is really great writing, and worth chewing on more than once. I read this second chapter in your Quality of Life blogs twice last night, and again this morning, and I keep finding...
  19. Kelvin Lord

    Article: Dr. Mikovits Talks! The XMRV Santa Rosa Lecture: Part II by Lannie

    Rich and Cort, What great info! The comments string to this post was amazing. I spent about an hour reading the references about "Augmenting Glutathione in CFS Patients" and was fascinated - it all made sense to me. Before starting Ampligen I was getting Glutathione shots I.M. for a few...
  20. Kelvin Lord

    Article: Learning to Fly Again (the Ampligen Chronicles)

    Thanks so much for the kind comments and support friends. Yes, Cort, I just don't have a category in my mind for this drug NOT being approved. It's been way too long, and the Ampligen story with the FDA over the past 20 years reads like something told around a camp fire in a third world...
  21. Kelvin Lord

    Comment by 'Kelvin Lord' in 'Learning to Fly Again'

    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...
  22. Kelvin Lord

    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...
  23. Kelvin Lord

    Comment by 'Kelvin Lord' in 'Overwhelmed'

    I really feel your pain and pathos here, dixielab...the vicarious ache of seeing a loved one like your son suffer might be harder than having the disease in some cases. For that reason, I will spare my usual padding and cut right to the chase and give you my opinion. I agree with MedFeb's...
  24. Kelvin Lord

    Sometimes the Only Thing Left to Do is Laugh!

    I get so frustrated with some of the nonsense of the medical community, that instead of screaming I watch my favorite comedian Brian Regan and laugh. Here's his classic routine on going to the Hospital. "" Enjoy!
  25. Kelvin Lord

    Comment by 'Kelvin Lord' in 'Thanksgiving with the CFIDS Monkey on My Back'

    I so related to the "sensory overload" part of your story, Carrigon. On the rare occasions where I have gone to some gathering like that I started to get militant and smart about the sensory thing, and would wear earplugs and sunglasses- yes, indoors! The earplugs reduced the crowd noise to a...
  26. Kelvin Lord

    Article: Treatment the UK way - the ME Association's ME/CFS Treatment Survey

    Wow. Talk about disappointing! You gave all the correct disclaimers at the front end, Cort, which I appreciate, but still I was shocked. Did I spend too long in the Hot Tub Time Machine? I almost wanted to check the calendar and see if it was written when Jimmy Carter was President. The only...
  27. Kelvin Lord

    Article: Breaking Out!

    Sasha, my plan is to finish the full 52 weeks, and then leave...NOT to stay on Ampligen long-term. I have had personal contact with at least a dozen patients who had Ampligen, three from the first trials in 1991, plus many since then, and with few exceptions, all are still very grateful and...
  28. Kelvin Lord

    Article: Breaking Out!

    Yes, 5150, I was pretty much non-functional by the time I arrived here late last December. As to the financial aspects and costs for treatment, clearly, it is a big investment at this time. Until Ampligen is approved, the only way to get it is in what is called "cost recovery" as part of a drug...
  29. Kelvin Lord

    Breaking Out!

    There was a prison breakout in the USA this past weekend of historic proportion. And like most escapes that require patience and tenacity, this one took 10 long months of preparation. But when the time came, the escapee acted almost without thinking, and ran with freedom in his eyes, and hope...
  30. Kelvin Lord

    Comment by 'Kelvin Lord' in 'Life Goes On Without Me'

    "They" may not be interested in what you have to say, but I am. I love the way you think and articulate so much in so little space. You inspire me. I'm glad you're here.