Article: Corinnes FOLLOW-UP APPOINTMENT WITH DR. PETERSON

sensing progress
Thank you for sharing all those details Corinne!

You mention that "I have found a local physician who is willing to collaborate with Dr. P". I was wondering how you went about finding that doctor? I am in the same position where I need to find a local doc to work with Dr. Klimas. My current PCP refuses!
 
Cort
Nice to see those fluish symptoms improved - they are so uncomfortable - and more functionality and improved digestion, and of course, there's still a long way to go. Hopefully its a foundation you can build on.

I think the XMRV testing will be very interesting...I have bumped into several severely ill people who do not appear, at least at his point, appear to have XMRV. I imagine the antibody test could add another 10 or 15 percent of patients to the XMRV positive category...and now we have other MLV's to think about.

I'm not surprised about your relative non-progress symptomatically with Procrit; I think Hurwitz found the same thing - it did increase blood volume but the patients didn't feel it that much. Still its good to get those indicators back into the normal range.

What does he think about the visual issues with computers? Anything about that?
 
Tony
Thanks for the great inside view Corinne. This sort of informative patient blogs/posts are very helpful in gaining understanding with the test results and treatments used.

Cheers!
 
Enid
Thank you so much for posting - there is simply nothing like this knowlegable testing in the UK and points the way for addressing all the symptoms we know so well. Very best wishes.
 
Daffodil
i cant believe peterson isnt prescribing ARV's yet. they are already FDA approved for HIV. he gives ampligen which isnt even FDA approved. even though he does have a long history with hemispherex, he has always been on the cutting edge of this and he should have been the first one to be trying ARV's. he sees some of the sickest patients, too.

and why would he make people take the stress test? i know he has the O2 hypothesis thing but making seriously ill people run on a treadmill??? WTF
 
Cort
Why would he prescribe ARV's to someone who has not tested positive for XMRV? In fact we know that he recommended ARV's to Joey early on and that he is Andrea's doctor and we can assume that she is taking them. He's also one of the first ME/CFS physicians to use Vistide - maybe the first. I think he is pretty cutting-edge.

Its a rough test but many doctors do the stress test- Cheney (correction) did it with me - and I think Corinne recovered pretty quickly from it.
 
mojoey
Thank you Corinne for posting this. It's great to hear another patient's experience with Peterson.

There will soon be clinical trials for it and he would much rather HGRV-pos patients do it in that setting where they can get monitored for safety vs. doing it on their own. Ampligen did go through clinical trials--it's just not FDA approved. He only administers it under trial settings, just open-label not double-blind, where patients need to get tested periodically for markers and safety.

I have mixed feelings about the stress test too. It's one of the best markers for diagnosis and progress (look at Cloud's and HVS's improvement after vistide) but combined with the altitude of incline village it is just a killer test. I have cardiomyopathy as it is that I'm not sure I would want to worsen it unless it were absolutely required (for disability testing) or I were on a drug that made me feel good enough that I'd risk getting a little worse.

I wasn't aware that Cheney did the stress test. Maybe he did in the past, but patients I've spoken to did not undergo it.
 
C
Thanks so much Corinne, It's nice to hear another perspective on my home away from home. I made 26 trips to his office in 2009 while doing the Vistide Tx. I was able to do the Amino Acid infusions here at home, but not the Vistide. I am 8 hours from Tahoe. I did the Amino Acid infusions for little over a year and they helped a lot not just with short term relief, but overall healing as well. The Vistide brought me back from the abyss. I had to lay down in the car and be driven to his office when we started....3 months in, I was driving myself. I made some really significant improvements on the Treatments.

I didn't know he had rented the adjacent room for IV therapy....must have happened just recently, and I'm really glad he did that because those Tx are helping lots of people. I always looked forward to chatting with others in there getting Tx because I would be hooked up for 5-6 hours. Yea, the VO2 max test makes us sick.....some have to stay in town a while because of it....but it is a great diagnostic tool, and from what I gather its respected by many SSA judges.

I was scheduled back in September too...but have pushed the appointment into October so we will have the Serology results. I hope you continue to improve on your treatments. It's all cutting edge in Tahoe. I just can't say enough good about Dr Peterson. Maybe I will get to meet you over there in Wonderland some day.
 
jenbooks
Just fyi, for years I have gotten 2.5 grams of IVIG every few weeks, more if I can afford it. Gamunex is about $75/gram so thats $180. I don't know who on here can and can't afford it but believe it or not, that amount is very helpful to me, without major side effects. Less can sometimes be more.

I personally wouldn't do that stress test, but doctors on a cutting edge like that need copious documentation for their non-standard-of-care treatments, especially if hoping they will be reimbursed.
 
R
jenbooks said:
Just fyi, for years I have gotten 2.5 grams of IVIG every few weeks, more if I can afford it. Gamunex is about $75/gram so thats $180. I don't know who on here can and can't afford it but believe it or not, that amount is very helpful to me, without major side effects. Less can sometimes be more.

I personally wouldn't do that stress test, but doctors on a cutting edge like that need copious documentation for their non-standard-of-care treatments, especially if hoping they will be reimbursed.
Click to expand...

I do not know if this helps, but in the press of my country, Spain, today I read this news:
New drug in the United States.
The North American Drug Agency (FDA) has granted the license to Grifols in U.SA., its new generation of intravenous immunoglobulin (IVIG) to 10% concentration, under the name of Flebogamma 10% DIF. This drug is now manufactured in Parets del Valles (Spain)
 
S
Thanks so much for sharing your information Corinne. The exercise test sounded really rough but was hopefully worth it. Good luck with the treatment and I hope that the new doctor you found will be 100% behind you in following Dr Peterson's treatments.

Cloud - you drove yourself after 3 months of treatment - WOW!!! That must have felt amazing. It certainly sounds like wonderland :) I hope there will be even more improvements for you to come.
 
U
Insurance Reimbursement for Gamma Globulin

IntuneJune said:
I have been on and off insurance paying for it. Right now I am OK, whew! But keeping my fingers crossed , am very grateful.

June
Click to expand...

I have taken Gamma Globulins 25g/month for 5 month. Dr. De Meirleir prescribed it to me. He prescribed it to me although I did not have any IGG deficiency or IGG subclass deficiency. he said it would help to lower my viral load.

I do not know, if it helped me. I have certainly improved lately, but this was 5 month after I had stopped receiving monthly IGG infusions and I have done a lot of other treatments as well during that time.

I think insurance will only reimburse, when the blood tests show a IGG deficiency. June where you diagnosed with a IGG subclass deficiency?
 
creekfeet
I'm so grateful for this entire series of articles. I can't really read through very well these days but still scanning it really helps me understand not only names of tests and symptoms but what the experience would entail, of going to a thorough specialty clinic. It sounds like you've been through such tremendous effort and pain to do all this, Corinne, and yet I so wish that my kid and I might someday have a similar opportunity. Meanwhile you are our pioneer and guide.

Thanks!
Kassy
 
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