Millions suffer from an invisible disease: My ME/CFS story--Ryan Prior--CNN

Sushi

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Every morning, I shave, brush my teeth, and swallow a dozen pills. I look in the mirror and thank God I can even walk out the door. Since 2007, I've lived with an incurable disease known as chronic fatigue syndrome. Internationally, doctors call it myalgic encephalomyelitis, or ME/CFS. The tongue-twister means "painful inflammation of the brain and nervous system."


The grassroots ME Action Network recognizes August 8 as "Severe ME Awareness Day." You may be surprised how many people in your life are, like me, struggling in silence with an invisible burden. The Centers for Disease Control and Prevention estimates up to 2.5 million Americans are suffering from ME/CFS, with many cases undiagnosed....
 

Dakota15

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It's actually showed in Forgotten Plague (his documentary he produced) - the name of his doctor and treatment methods. I know Ryan completed a Reddit Q&A prior to the release of the documentary that explained his treatment plan as well.

I think we're definitely lucky to have his voice in our community and his gift for writing / storytelling - Forgotten Plague is a wonderful platform to educate.
 

Gingergrrl

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It's actually showed in Forgotten Plague (his documentary he produced) - the name of his doctor and treatment methods.
I went to a screening of Forgotten Plague in Oct 2014 in Hollywood and had the privilege of meeting Ryan Prior who was very impressive and wise beyond his years. If I remember correctly from the movie, his doctor was Charles Lapp (but I am not 100% certain that I am remembering this correctly from four years ago)!

I also cannot remember if he disclosed his treatments in the movie, but even if he did, they are probably different now that four years have gone by. I am also very curious if the infusions that he mentions are IVIG or something else? I think IVIG is one of the most promising treatments out there (for ME/CFS, immune deficiency, and autoimmunity, even when it is not crystal clear what the diagnosis is). If IVIG did not cost it's weight in liquid gold, I believe that more people would have the opportunity to try it but it is unbelievably difficult to get insurance approval. Even though I was able get approval, I am still trying to resolve an ongoing insurance battle over IVIG which at this point may never be resolved.

I know Ryan posted on PR at one time but I cannot figure out what avatar name he used (or else he no longer posts here). I was going to thank him again for making such a great movie and for all of his help to the community.
 

Dakota15

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Since he shared it in the documentary and on Reddit, I recorded it for reference at one time (to possibly also pursue), so I can share out considering it's public knowledge.

The doctor he credits for his improvement is Dr. Karen Bullington near Atlanta, Georgia from the Holtorf Medical Group - I think it used to be a part of the Fibro and Fatigue Clinics, but it is now part of Holtorf. His testimonial is listed on the website under 'Ryan P' for Dr. Bullington.

On his Reddit Q&A prior to the documentary release, he stated: "I continue to get an IV infusion monthly (with about 14 ingredients: NADH, glutathione, B12, B2, B-Complex, and many more) as well as give myself a shot weekly (glutathione, NADH, hydroxocobalamine, adenosine monophosphate). I still have to take about 15-20 pills daily."

Obviously I don't know for certain if other IV's were used during his treatment process but it appears that he credits these IV's for his improvement.
 

Gingergrrl

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Thx for sharing that @Dakota15. I remember he saw a male doctor in Forgotten Plague (who I thought was Dr. Lapp?) but he definitely did not say he credited him with his recovery or anything like that. Some day I want to watch it again since it was so long ago (and wish he could make a sequel to follow-up on some of the people in it).
 

Riley

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Thx for sharing that @Dakota15. I remember he saw a male doctor in Forgotten Plague (who I thought was Dr. Lapp?) but he definitely did not say he credited him with his recovery or anything like that. Some day I want to watch it again since it was so long ago (and wish he could make a sequel to follow-up on some of the people in it).
Dr. Lapp was interviewed in Forgotten Plague regarding Ampligen. However, he is not Ryan's physician.
 

Gingergrrl

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Dr. Lapp was interviewed in Forgotten Plague regarding Ampligen. However, he is not Ryan's physician.
I apologize for remembering this wrong! Do you know who was the doctor in Forgotten Plague that Ryan saw for routine blood work and I think also for follow-up after he went to the ER with myocarditis? I thought that person was his main doctor and now I can't remember who it was if not Dr. Lapp? It was a male doctor that I was not familiar with (it was not Cheney, Peterson, Montoya, Kogelnik, Kaufman, etc) but I can't think of who it was!