What ever happened to the Mike Dessin treatment story( follow up)?

[mojoey]

Hi Garcia,

it was very difficult to figure out the criteria for inviting people, but if you understand what I said about needing to protect the doctor, how can you not understand the need to be selective in order to prevent invited members from leaking out the information?

For that reason, we decided to only invite patients that we knew personally and trusted to keep quiet or were doing the treatment themselves and whom promised to report their experiences in the thread to prove they weren't "trolls." In the process we admittedly denied access to well-meaning individuals whom are just interested out of curiosity, but given the circumstances it made sense to err on the conservative side. I hope those disappointed by my response will take solace in the fact that we also decided that if anyone besides Mike was cured from this therapy, we would go public with the story.

 

[bakercape]

That sounds

Hi Garcia,

I hope those disappointed by my response will take solace in the fact that we also decided that if anyone besides Mike was cured from this therapy, we would go public with the story.

Ethical at least. If more people are cured besides Mike than the story would be made public. Hopefully the story would include the treatment

Are we to summize then that Mike was the first patient this doctor has cured. He was the first and only up to this date. I would think he must have helped others before Mike.

 

[maryb]

Forbin thanks for the links - I now know what it is but not who does it (in Europe) or if it is successful with ME patients:-( so its back to the drawing board I think for now.

 

[mojoey]

Hey bakercape,

Mike is definitely not the first patient doc has cured. Keep in mind that he is not a CFS specialist. He treats all kinds of chronic illnesses including parkinson's, cancer, autism etc. But it's the same old song with the few that are cured--they don't really come back into the office; they're too busy living their lives.

 

[bakercape]

Thanks for sharing that the info will be

Hey bakercape,

Mike is definitely not the first patient doc has cured. Keep in mind that he is not a CFS specialist. He treats all kinds of chronic illnesses including parkinson's, cancer, autism etc. But it's the same old song with the few that are cured--they don't really come back into the office; they're too busy living their lives.

shared if it helps more. I've been sick longer than healthy in my life and the story gave me one more reason to keep a small hope for wellness or improvement alive. I'd just want to think we could all benefit if it proves to be useful. I just hoped that if it seems to consistently help people and it is a certain regiment that it will not be kept secret out of fear.

I'm sorry if it did not help you. I'm sure that must have been disappointing.

when I'm having more energy I will read the links someone kindly provided.

 

[mojoey]

Another thing I will upfront about: most CFS patients will never be able to afford this treatment. As I said, I've spent over 20k in ~7 months of treatment, and this type of treatment will never be covered by insurance.

I don't want you or anyone else to get their hopes up about this treatment if it's not a realistic option within your budget.

I can't even begin to tell you how disappointed I am that it didn't work. I came to Columbus in pursuit of nothing less than a cure, but it is not the doctor's fault nor mine that it didn't work. I put all the blame on the agencies that have deterred physicians from having anything to do with a retrovirus in association with our illness for the past 20 years. When discussing ampligen with Kelvin Lord, I agreed with him that 20k is nothing in the grand scheme of things for a cure because I can make that money back in a full-time job in a few months. I've always carried that philosophy in the last 5 years of treatment, and this approach has surely cost me a pretty penny. If I'd known in advance that none of these therapies would get me to the finish line, it would've been saved me a lot of money to start ampligen 4 years, but I always had this ridiculous notion that if I could just get close enough to the truth, maybe other patients wouldn't need to stay on any drug for the rest of their lives. Of course, the retrovirus findings make this possibility that much more obscure to envision.

Frankly I am thrilled that a few individuals can afford to continue to see Mike's doc and continue to improve. I truly hope more individuals are cured by this therapy: the more options the better, and it would hopefully reverse the preposterous notion, once and for all, that this was part of some big scam on the part of Mike and Cort. Truths are rarely proven without paying a huge price, especially in the topsy-turvy world of ME/CFS.

 

[Dainty]

Thank you, m0joey, for your responses to this thread; I've found them helpful.

 

[bakercape]

I've spent

Another thing I will upfront about: most CFS patients will never be able to afford this treatment. As I said, I've spent over 20k in ~7 months of treatment, and this type of treatment will never be covered by insurance.

I don't want you or anyone else to get their hopes up about this treatment if it's not a realistic option within your budget.

I can't even begin to tell you how disappointed I am that it didn't work. I came to Columbus in pursuit of nothing less than a cure, but it is not the doctor's fault nor mine that it didn't work. I put all the blame on the agencies that have deterred physicians from having anything to do with a retrovirus in association with our illness for the past 20 years. When discussing ampligen with Kelvin Lord, I agreed with him that 20k is nothing in the grand scheme of things for a cure because I can make that money back in a full-time job in a few months. I've always carried that philosophy in the last 5 years of treatment, and this approach has surely cost me a pretty penny. If I'd known in advance that none of these therapies would get me to the finish line, it would've been saved me a lot of money to start ampligen 4 years, but I always had this ridiculous notion that if I could just get close enough to the truth, maybe other patients wouldn't need to stay on any drug for the rest of their lives. Of course, the retrovirus findings make this possibility that much more obscure to envision.

Frankly I am thrilled that a few individuals can afford to continue to see Mike's doc and continue to improve. I truly hope more individuals are cured by this therapy: the more options the better, and it would hopefully reverse the preposterous notion, once and for all, that this was part of some big scam on the part of Mike and Cort. Truths are rarely proven without paying a huge price, especially in the topsy-turvy world of ME/CFS.

quite a bit too. But never that much on one treatement. But if I thought there was a good chance one would help me a lot I would.

I've been pretty naive I guess as I've thought Ampligen would be approved by now for CFS patients and available through insurance. Those Naive days are over.

Now I'm worried that if many of us need expensive antivirals or immune modulators that insurance will never pay for it.:Retro mad:

I wonder how much out of pocket HIV patients have to pay for there meds?

 

[garcia]

Thank you, m0joey, for your responses to this thread; I've found them helpful.

Me too Joey. Many thanks for all the info.

 

[leela]

One project I'm currently pursuing is interviewing all the recovered CFSers I can find, to create a record of their experiences. I think this will be interesting in itself, and hopefully will allow us to get a better sense of whether there are any commonalities with regard to how people have gotten well. Following up on them as time goes on will provide further information as well.

Rich van K has been kind enough to introduce me to some people, and I've found some additional ones.

So far, most of the people I've found have been willing to share their real names publicly. Those who haven't wanted to go that far have said that they're willing to talk privately to doctors etc. who are sincerely interested in their stories.

If anyone has any leads on more people who have gotten to near or full recovery, I would much appreciate your letting me know.

Best, Lisa

Lisa,

Could you give an estimate of how long the list of recoverees is so far? I get disheartened sometimes thinking no one ever gets better, so it would be nice to see a number.

Also, are you compiling a list of the treatments that the recovered people used? I'm sure we'd all love to see that! How can we get connected to the people who are willing to share their recovery info, so we can discuss it with our doctors?

Sorry for the question-slam, your post just me feeling kind of hopeful and excitied!
:sofa:
~leela

 

[dannybex]

Lisa,

Could you give an estimate of how long the list of recoverees is so far? I get disheartened sometimes thinking no one ever gets better, so it would be nice to see a number.

Also, are you compiling a list of the treatments that the recovered people used? I'm sure we'd all love to see that! How can we get connected to the people who are willing to share their recovery info, so we can discuss it with our doctors?

Sorry for the question-slam, your post just me feeling kind of hopeful and excitied!
:sofa:
~leela

Hi Leela,

Dr. Klimas has been quoted as mentioning patients of hers who have recovered. Perhaps some time Cort can interview her specifically on this topic. I would just keep in mind that what helps some people won't help others -- we all probably have different co-factors, different exposures, etc. But people do recover, even if it's rare.

d.

p.s. Google Martha Kilcoyne's story. She wrote a book, which should be available at your library -- it's very 'user-friendly' and inspirational, plus Cort has written about her a couple of times.

 

[leela]

Hi Leela,

Dr. Klimas has been quoted as mentioning patients of hers who have recovered. Perhaps some time Cort can interview her specifically on this topic. I would just keep in mind that what helps some people won't help others -- we all probably have different co-factors, different exposures, etc. But people do recover, even if it's rare.

d.

p.s. Google Martha Kilcoyne's story. She wrote a book, which should be available at your library -- it's very 'user-friendly' and inspirational, plus Cort has written about her a couple of times.

Thanks Dannybex!
I do need some extra weight in my Hope Basket from time to time, so knowing a few success stories would be really helpful. I had never heard mention of Martha K, so thanks too for that.

I am keenly aware that everyone's inner terrain is different, and thus their list of pathogens and system compensations diverse, and that each of us has had different environmental exposures and genetic predispositions. But besides the wonderful practitioners I have now, who basically just help me manage enough that I can still leave the house from time to time, the only thing I have to go on is to hear what has worked for others and see if that resonates enough to give it a try.

I noticed that Martha did relapse, though. It seems the reality here might be that we will always and forever have to take extra care with ourselves, but that there *is* hope that we can return to a healthy, happy life as long as we be extra kind and careful with ourselves--which of course is not a bad philosophy for anyone!!

 

[knackers323]

So this did cure Mike permanently and he is now still living a normal life?

 

[Esther12]

Didn't realise this thread was so old when I started reading it... some big money being discussed here.

At this point, I think that money is probably better spent on rigorous research than experimental treatments, eg:

http://www.microbediscovery.org/

 

[justy]

So this did cure Mike permanently and he is now still living a normal life?

I believe that is the case.

 

[knackers323]

What is the success rate of this treatment?

 

[SOC]

What is the success rate of this treatment?

If this treatment managed to cure a significant number of patients, I imagine we'd have heard a lot more about it in the past 4 years.

It might work for a very small, specific subset of patients. Do we know how the patients who were cured were diagnosed (Oxford, Empirical, Fukuda, CCC, ICC), or what pre-treatment immune or pathogen test results were? That might give a small clue as to which, if any, subset of patients this treatment might help.

 

[leela]

I think the fundamental issue here is the concept of a discrete treatment, that works universally.

I suspect we are finding that there are a variety of things, and specific phases in which to do them, that work with the set of variables each patient brings. I don't know a lot about the specifics of MD's treatments, but I do know that it was a variety of things, done over time.

I think we are each going to have to find what those things are for us, and when they are most appropriate for us.
I highly doubt there is going to be the One Magic Thing.

MD's transformation was absolutely remarkable. That he was able to achieve this at all gives me hope that it is possible--
whether what he did will work for me is another question--but that he did it at all is so inspiring.

 

[Sushi]

What is the success rate of this treatment?

I don't know the overall success rate but 2 other members from here (whom I know of) did the same protocol and actually got worse--so it seems, again, to be individual.

Mike is still a member here (Michael Dessin), so you could send him a conversation and he would probably get an email notification unless he has turned that off.

Best,
Sushi

 

[barbc56]

IMHO, from what I read, I don't, believed Mike ever had me/cfs and a lot of people got caught up in the story as well as the treatment. The doctor whose name was eventually outed used therapies that are not scientifically proven. If nothing else homeopathy, which was part of the treatment, has to be the easiest treatment to debunk, even if you believe in other alternative treatments.

I don't remember if the other treatments used were valid or not but the homeopathy stuck in my mind. The treatment was very expensive.

If I remember correctly, Mike had only been sick for a short time. One possibility is that whatever he had cleared up on it's own. But of course I am just speculating.

Anyone know if the doctor is still practicing?

Unfortunately, I found the whole story time wasting as far as finding something to help us.

But that's my opinion. Others may feel differently.

Barb