Article: 'Driving Miss Daisy' : Corinne At Dr. Peterson - Visit #4 (May 2011)

You can view the page at http://forums.phoenixrising.me/content.php?494-Corinne-At-Dr.-Peterson-Visit-4-CFS-MECFS-treatment

 

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If anyone is interested in submitting questions to Dr. P for me to ask when I see him in two weeks....please submit them here (you must click on reply for this comment section to work). I am collecting questions and the one's I find appropriate I will get answered and include them in my next blog. Please submit by Nov. 1st...thanks!

 

Hi Corinne, I'd be glad if you'd be able to ask Dr. Peterson the following question: Is ME/CFS contagious? If so - is it contagious all the time or just in the beginning of the disease? Could a person with ME/CFS infect his spouse, his children, his relatives? If there is no proven answer, I'd be glad to hear what is Dr. Peterson's opinion.

 

Thanks for the offer. I'd like to know what Dr. Peterson thinks of the Norwegian Rituxamib study and the conclusion all over the news that ME is an autoimmune problem. To me this doesn't fit in with the fact that there are outbreaks like the one in Incline Village. Perhaps a viral agent starts the illness and makes the immune system dysfunctional, a la HIV/AIDS?

 

Yes, researchers suspect that pathogens play a role in triggering a number of autoimmune disorders in susceptible individuals. Thanks to Will, comments are working now..:

 

Do you know if that means that there is a continuous presence of the pathogens, or if the pathogens would be long-gone and the immune system is still broken? Because if they are still there, to me that would not mean "auto-immune," but just an immune system continually responding to the pathogens. This is what I would hope the researchers would try to discern.

 

Thanks so much for sharing your experience and information, Corinne. Cytokine storms! Wow, now I know why I always feel so awful after spending too much time at the computer. You ask great questions. I'm glad you're getting some help.

 

yes it's amazing the connection. I have to really monitor how long I spend on the computer and have to limit it to every other day. I mentioned it to a friend who gets severe migraines and she finally put two and two together....so unfortunately even though the computer gives me some semblance of a "social life" , I have to stay away.
Thanks for the questions so far.....send more!!! I'll print them out and read them to DrP one by one!

 

Does he have any patients with mild/moderate CFS? If yes, does he find the same dysfunctions overall, but just less intensity? [I've been sick for 25 years, no OI, all the other typical problems - issues with sleep, memory, PEM, fatigue etc - but relatively mild.] Madie

 

Does he have any patients with mild/moderate CFS? If yes, does he find the same dysfunctions overall, but just less intensity? [I've been sick for 25 years, no OI, all the other typical problems - issues with sleep, memory, PEM, fatigue etc - but relatively mild.] Madie

Thanks! I will ask him

 

Hi Corinne, thanks so much for your kind offer to ask Dr Peterson some questions, and also for sharing your experiences with us.

My question is to ask does he see long remmissions in his patients and if so what does he think is going on when a patient has a remmission.
I personally had a near full remission for a number of years when i went from being ill for 5 years moderately to nearly 90% functioning for about 8 years (couldnt increase fitness or stamina much or work full time but could lead a normal life more or less) now after catching measles 3 years ago i am moderatlet to severley affected. I wish i could understand more about the remmission mechanism, ive talked to many other patients who have experienced this but i also know that just as many have never had a remmission.
Thanks, Justy.

 

Dr Peterson drug trial

If anyone is interested in submitting questions to Dr. P for me to ask when I see him in two weeks....please submit them here (you must click on reply for this comment section to work). I am collecting questions and the one's I find appropriate I will get answered and include them in my next blog. Please submit by Nov. 1st...thanks!

Hi Coinne.Could you ask what drug is being used for the trial you are considering and if someone with CFS who is not a current patient of Dr Peterson can apply?

 

Hi Corinne, thanks so much for your kind offer to ask Dr Peterson some questions, and also for sharing your experiences with us.

My question is to ask does he see long remmissions in his patients and if so what does he think is going on when a patient has a remmission.
I personally had a near full remission for a number of years when i went from being ill for 5 years moderately to nearly 90% functioning for about 8 years (couldnt increase fitness or stamina much or work full time but could lead a normal life more or less) now after catching measles 3 years ago i am moderatlet to severley affected. I wish i could understand more about the remmission mechanism, ive talked to many other patients who have experienced this but i also know that just as many have never had a remmission.
Thanks, Justy.

I would guess, Justy, that it has something to do with the modualtion of your immune system, perhaps the increase back to near normal of your NK cells...and then the virall illness (measles) induced a dysfunctional immune system again...perhaps one that couldn't reset itself (?) But I will be sure to ask him Thank you!

 

Hi Coinne.Could you ask what drug is being used for the trial you are considering and if someone with CFS who is not a current patient of Dr Peterson can apply?

The drug is a new version or neew delivery system of cfidovir (Vistide)...it's called CMX001 by the manufacturer Chimerix. It's supposed to be a newer, non-toxic version....you can read about it on the home page of this website...Cort wrote an article, entitled CMX001 Drug Trial. It's a pill you take twice a week as opposed to the I.V. administration of Vistide. thank you!

 

Hi Corinne, thanks so much for your kind offer to ask Dr Peterson some questions, and also for sharing your experiences with us.

My question is to ask does he see long remmissions in his patients and if so what does he think is going on when a patient has a remmission.
I personally had a near full remission for a number of years when i went from being ill for 5 years moderately to nearly 90% functioning for about 8 years (couldnt increase fitness or stamina much or work full time but could lead a normal life more or less) now after catching measles 3 years ago i am moderatlet to severley affected. I wish i could understand more about the remmission mechanism, ive talked to many other patients who have experienced this but i also know that just as many have never had a remmission.
Thanks, Justy.

Great question Justy - I think this is a VERY interesting subset. I have never been as sick as most but I've also never experienced anything approaching a remission. I know someone who became really healthy and ultimately relapsed really, really badly...its a very strange illness, for sure.

 

I would like to find out more how his work with Simarron ties in the Rituximab finding. Has he been in touch with Mella or Fluge?

 

i'd love to know if he has seen any patients who seem to improve from the neck down but the brain still stays completely foggy...and why he thinks this is...
thanks!

 

i'd love to know if he has seen any patients who seem to improve from the neck down but the brain still stays completely foggy...and why he thinks this is...
thanks!

Good question as I have a girlfriend who has compained primarily of brain fog for 27 years. She can exercise, has gut issues, but brain fog is her primary complaint. She calls it "spaciness'.
I will use this question for sure! Keep sending them as you have just two more days !!!

 

OOh it's a bit greedy i know but i have another question, just wondering what Dr Petersons views are on the Methylation cycle block hypothesis. Im interested to know if he knows much about it and what his views are. The reason i ask is allthough i havent tried the treatment it seems a good unifying type theory and the treatment is neither expensive nor dangerous.

Hmm, now im really thinking im wondering what his views are on mitochondrial dysfunction..... but i guess we can't ask everything!
I hope the appointment goes well!
Take care, Justy.