• Welcome to Phoenix Rising!

    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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Ampligen Experiences

lenora

Senior Member
Messages
4,968
@HenryBSilver .........Martin (Germany) would be great for you to contact. He is no longer on this forum BUT has tried many, many therapies. None, to the best of my knowledge have worked.

Does anyone know how to contact Martin? I wonder how he's doing? Perhaps Pyrrhus also joined him....I don't know.

From a book I read (& have somewhere) the history of Incline Village and the NIH was given. Very thick and long book, but is excellent. Anyway, you should be aware that the NIH keeps a very wary eye on Dr. Peterson and what he's doing. Good luck to all of you if you're using Ampligen.

Doctors do get burned out and have so, so many patients. He seems to be kind, though. Yours, Lenora
 
Messages
17
@HenryBSilver .........Martin (Germany) would be great for you to contact. He is no longer on this forum BUT has tried many, many therapies. None, to the best of my knowledge have worked.

Does anyone know how to contact Martin? I wonder how he's doing? Perhaps Pyrrhus also joined him....I don't know.

From a book I read (& have somewhere) the history of Incline Village and the NIH was given. Very thick and long book, but is excellent. Anyway, you should be aware that the NIH keeps a very wary eye on Dr. Peterson and what he's doing. Good luck to all of you if you're using Ampligen.

Doctors do get burned out and have so, so many patients. He seems to be kind, though. Yours, Lenora
@lenora:

I'd be interested to have his input.
 

lenora

Senior Member
Messages
4,968
Hi @HenryBSilver. I have no idea where you can reach Martin. Someone else may and I hope they'll respond.
He certainly knows a lot about the doctors in Europe, has tried some of their therapies but the last I heard he wasn't any better. A great sadness as he truly tried everything.

He does know a lot of the doctors and what they're working on though. So I hope someone writes in. Jeff White would know, I'm sure....he did a lot of studying re: our condition before he embarked on self-treatment. Fla. seems to be the place here at the moment. Do you have other concurrent conditions?

Pyrrhus is good and would certainly know where Martin is. Pyrrhus isn't seen around PR at all these days....pity.

My ME was congenital. Other (most cases) are caused by accidents....sports, car, anything that messes the neck up. Answers are hard to come by as everyone here can attest. Yours, Lenora
 
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hapl808

Senior Member
Messages
2,180
if anyone is interested, i am doing fmt and feel like i am on the right track. several in remission or cured using this method in the facebook groups.

Would be very interested in hearing ongoing reports on FMT from someone who is a long term member of the community here. I think FMT is very promising, in that I believe a lot of neurological and other disorders are highly connected to the gut. The problem with a lot of reports is someone has great results, but then you don't hear from them again or the 'remission' doesn't sound like remission at all.

A lot of 'remission' stories I've heard (from brain retraining, various protocols, etc) often sound more like, "Well, I'm still limited in these 20 ways and these new symptoms are because I also had untreated XXX so now I'm getting these 3 new protocols which seem very promising."

Anyways, very glad to hear you're seeing improvements and hope you let us know more when you can, both about how you did it (finding a donor or treatment) and the effects. One of the great things about PR is that you don't get as many reports of people who have been 'sick' for three months and found a cure and want to tell everyone. Sadly, many here are quite experienced and most have tried a lot of stuff already before joining here.
 

Daffodil

Senior Member
Messages
5,875
hi guys! for the MOTHERLOAD of FMT information, please join the facebook group: https://www.facebook.com/groups/1676427302597468
FECAL MICROBIOTA TRANSPLANTATION (FMT) the one with 6.5K members.

@hapl808 I was confused about the whole brain retraining thing for years. Intelligent, sensible people I know, who were bedridden. are saying they are greatly improved by it. The only thing I can figure is, de-stressing does something to the vagus nerve and/or microbiome. I know stress affects the microbiome a lot.

A couple of people say that FMT + brain retraining was the key for them.

Some who got well and left the groups, drank the poop straight. I have been unable to do that.

Almost no one in the FMT groups has been sick with ME/CFS as long as I have so I am pretty much on my own and cannot compare progess, side effects etc etc. But the group is invaluable for info and support

FMT can be had in clinics around the world (not north america), it can be orderered online, or, as many of us are doing, DIY with a family or local donor...after testing.
 

Daffodil

Senior Member
Messages
5,875
@hapl808 FMT remission stories are varied. There are several who report 90-95% cure and they never have to do anything again. Others report being able to live normally again as long as they do occassional "booster" FMT's. Some have to do boosters if they get extra stressed, after sickness, or after antibiotic use.

VERY disapointed at the Norway FMT study, which will be negative, but used ONE single FMT colonscopy. Many are finding they have to do FMT for prolonged periods of time - sometimes 2 years.

As for me, I will never expect to get more than 40-50% improvement if I am very lucky and I expect it to take years. However, there are small things that have happened that, to me, indicate that I am on the right track, without a doubt.
xox
 

junkcrap50

Senior Member
Messages
1,353
Hi @HenryBSilver. I have no idea where you can reach Martin. Someone else may and I hope they'll respond.
He certainly knows a lot about the doctors in Europe, has tried some of their therapies but the last I heard he wasn't any better. A great sadness as he truly tried everything.
...
Pyrrhus is good and would certainly know where Martin is. Pyrrhus isn't seen around PR at all these days....pity.
@HenryBSilver Martin's most active on Twitter: https://twitter.com/pausedME

Where did @Pyrrhus go? Seems like a lot of people are no longer here. I think several big time contributors/people drifted into Discord groups. But I don't know which discord servers. I can't even get back into ones I used to belong to! So frustrating! Also, Facebook group's gotten very popular after Long Covid.
 

Daffodil

Senior Member
Messages
5,875
I cannot believe how many long covid people there are, echoing the exact same things we were decades ago. I hear them telling stories of things they have tried, doctors who dismiss them, family who doesn't support them etc etc. It is like deja vu for me, from 30+ years ago. I cannot believe they have to re-trace our footsteps even after this long.

Just read about some desperate long covid patients going to Cyprus for plasmapheresis. They talk about ozone, LDN.....just unreal. Exactly the same disease and still almost no help

They are lucky in that microbiome interventions will come so too much of their lives won't be wasted. I hope
 

Daffodil

Senior Member
Messages
5,875
Canada's healthcare system is so destroyed and useless now and healthcare costs so high, Canada has really stepped up to the plate for people like us with chronic illness: they have made assisted suicide easily accessible. So that is just wonderful of them. No more disability payments, no more drain on healthcare costs. What a great solution they have come up with. Several on FB have applied for this. Just love Canada. Warms the cockles of my heart.
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,129
Location
australia (brisbane)
I cannot believe how many long covid people there are, echoing the exact same things we were decades ago. I hear them telling stories of things they have tried, doctors who dismiss them, family who doesn't support them etc etc. It is like deja vu for me, from 30+ years ago. I cannot believe they have to re-trace our footsteps even after this long.

Just read about some desperate long covid patients going to Cyprus for plasmapheresis. They talk about ozone, LDN.....just unreal. Exactly the same disease and still almost no help

They are lucky in that microbiome interventions will come so too much of their lives won't be wasted. I hope

Hi Daffodil,

I was seeing a Dr a couple of days ago about something sort of cfs unrelated and she asked me about my medical history. My eyes just rolled back, well I have post viral fatigue since 2002. She then started talking about post covid fatigue and how so many people have got it and it so similar to cfs but we don't know much about it. My reply was yep, the 21 years I've had it, medicine hasn't taken it seriously but maybe now that a large chunk of the world have it all at once, something might happen. I even mentioned the study I was in 14 yrs ago showing how cfsers have low nk function. She actually changed the subject and didn't want to talk about it anymore. Maybe although I doubt it, she realised the neglect medicine has had for post viral illnesses, even ignoring the research that does come out.

Long haul covid definitely seems like ground hog day.

Cheers,
Heaps👍
 

Daffodil

Senior Member
Messages
5,875
"didnt wanna talk about it anymore" LOL figures. people just dont wanna deal with anything difficult that takes up time and is controversial.

can you blame them? almost every doc who went into me/cfs crashed and burned. Lipkin with the lawsuit...Montoya fired from stanford....Govt trying to shut down KDM for a long time....Peterson too I think....some controversy with that guy doing Rituxan in Cali....cant remember name....Endlander lawsuit.....and others I cant even talk about. Cursed disease lol
 

hapl808

Senior Member
Messages
2,180
can you blame them? almost every doc who went into me/cfs crashed and burned. Lipkin with the lawsuit...Montoya fired from stanford....Govt trying to shut down KDM for a long time....Peterson too I think....some controversy with that guy doing Rituxan in Cali....cant remember name....Endlander lawsuit.....and others I cant even talk about. Cursed disease lol

Yep. Goldstein as well. And not cursed, but persecuted by all sides. Saw a Long Covid person calling David Systrom a 'quack' on social media the other day, which I thought was weirdly aggressive and pejorative. We've had so few 'legit' physicians who even took ME/CFS seriously, yet the Long Covid people don't want to be 'lumped in' with us because even they don't take us seriously much of the time.

Ah well. I don't blame the physicians. If I were a healthy doctor, I have no illusions that I would be forging ahead in ME/CFS as opposed to getting consistent accolades and wealth in cancer treatment.
 

JES

Senior Member
Messages
1,326
@HenryBSilver Martin's most active on Twitter: https://twitter.com/pausedME

Where did @Pyrrhus go? Seems like a lot of people are no longer here. I think several big time contributors/people drifted into Discord groups. But I don't know which discord servers. I can't even get back into ones I used to belong to! So frustrating! Also, Facebook group's gotten very popular after Long Covid.
The one very experimentation and medication oriented Discord server got nuked at least once over the last couple of years and now requires a membership fee and has some alternative backup solutions set up due to Discord's stricter policies.

It is indeed becoming difficult to share information when everything now exists in disorganized social media channels governed by tech giants that all have their limitations regarding sharing medication or nootropic related stuff.

IMO private forums like this were far better, but I suppose the young generation only wants to use platforms they are already familiar with.
 
Messages
17
The one very experimentation and medication oriented Discord server got nuked at least once over the last couple of years and now requires a membership fee and has some alternative backup solutions set up due to Discord's stricter policies.

It is indeed becoming difficult to share information when everything now exists in disorganized social media channels governed by tech giants that all have their limitations regarding sharing medication or nootropic related stuff.

IMO private forums like this were far better, but I suppose the young generation only wants to use platforms they are already familiar with.

@JES:

What a pity. I suppose I belong to the "young generation" but am proudly unfamiliar with the detailed operation of many of the platforms the others in it seem to prefer, including Discord. If I could obtain this information from any other source, particularly a more human and less electronic one, I'd have done so already, but almost all real knowledge and memory outside the narrowing and increasingly thought-policed margins of the Internet have been more or less abolished, it seems to me. All the same, do you know or does anyone else know how one may apply to join or be invited to join this server?
 

Daffodil

Senior Member
Messages
5,875
Just wanted to update you guys. 8 weeks into FMT, I am starting to feel markedly better.
Yesterday: was able to cook 3 dishes and clean. Today: not too much payback.

I expected it to start at the 3 month mark like last time but this time, I am noticing it 2 months in
 

hapl808

Senior Member
Messages
2,180
Just wanted to update you guys. 8 weeks into FMT, I am starting to feel markedly better.
Yesterday: was able to cook 3 dishes and clean. Today: not too much payback.

Can you remind us how you went about FMT? Sorry, I get mixed up on the stories but it's an area that interests me a lot. Is this your second time?
 

Daffodil

Senior Member
Messages
5,875
lol that is a very very long story. but to be make it brief, i first ordered from microbioma.org to see if i felt anything. i did. so i knew this could be something big. then i ordered some more while i eventually found a local donor. there are a lot more details but you can join the FB FMT groups. i made capsules and also used enemas but found capsules better.
 
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