Article: Corinne At Dr. Peterson #6 Including Picking Dr. Peterson's Brain!

You can view the page at http://forums.phoenixrising.me/content.php?535-Corinne-At-Dr-Peterson-6-Picking-Dr-Peterson-s-Brain!

 

Hi Corinne,

thank you for your highly informative, thorough and upbeat posts. I have learned a lot.

I have a lot of GI problems, and have never heard of the "immunobilam panel" Can you explain what it tests and what it shows? Is is a standard test? Xifaxan might be helpful for me, and will ask my doc about it.

thanks again.

JAH

The immunobilan panel is a blood test. Mine was done by Unevx, Inc in Reno (associated with Redlabs???). It is not approved by the FDA, as many of Dr P's tests note. It shows the evidence of antibodies (IgA) to bad gut bacteria such as Klebsiella pneumoniae subsp., Proteus mirabilis, Citrobacter koseri, etc. It ranks them as "normal range, high range or extremely positive". My guess would be that this is showing the evidence of antibodies to these bad bacteria that are found in the blood. To me this would suggest something like "leaky gut" and the fact that these bad bacteria may be getting into the blood stream and upregulating the immune system...????? just my guess.

 

Corrine, thanks for sharing your journey. I'm very happy for your progress. If a poll were conducted I think the vast majority would say this disease originates in the GI system. I've believed this from the beginning. It's wonderful to see diagnostics and treatments becoming available for this.

I tested highly positive for 3-4 of the bacteria markers on that same Immunobin test. I also tested "very positive" for Leaky Gut. Although I believe addressing these issues is key, I had no response at all to a month of Xifaxan. The follow up VSL sent me into a dive and had to be stopped. I have not yet returned to address this issue, but know that I must.

Surely my systemic inflammation begins in the GI system, which is the first to go down when I flare. Certain abx (excluding Xifaxan) have a profound yet temporary effect on my symptoms and I believe that is due to holding down the bacteria causing the dysbiosis, as well as their immunomodulatory effects. Most effective for me has been Cipro and Azythromycin.

 

Thank you corinne and tristen for sharing your info on the immunobilan blood test. I will discuss it with my doctor. Sorry the xifaxan did not work for you, tristen.

JAH

 

Corrine, thanks for sharing your journey. I'm very happy for your progress. If a poll were conducted I think the vast majority would say this disease originates in the GI system. I've believed this from the beginning. It's wonderful to see diagnostics and treatments becoming available for this.

I tested highly positive for 3-4 of the bacteria markers on that same Immunobin test. I also tested "very positive" for Leaky Gut. Although I believe addressing these issues is key, I had no response at all to a month of Xifaxan. The follow up VSL sent me into a dive and had to be stopped. I have not yet returned to address this issue, but know that I must.

Surely my systemic inflammation begins in the GI system, which is the first to go down when I flare. Certain abx (excluding Xifaxan) have a profound yet temporary effect on my symptoms and I believe that is due to holding down the bacteria causing the dysbiosis, as well as their immunomodulatory effects. Most effective for me has been Cipro and Azythromycin.

Hi Tristan

thanks for your comment. The only thing I would say to praise Xifaxan is that it's a gut antibiotic...NON-SYSTEMIC..not absorbed into the bloodstream, staying totally in the gut...unlike Cipro, etc. and knowing our tendency for side-affects, etc, that is why I like it and am not hesitant when asked to take it.

thanks again...and please feel free to submit any questins you might have for Dr P

 

Hmmmmmmm...doesn't anyone have a question they would like to ask Dr.P? Bring them on!
A big thanks to all who submitted questions that I used in this blog. It was a blast asking them for you..... Corinne

 

Hmmmmmmm...doesn't anyone have a question they would like to ask Dr.P? Bring them on!
A big thanks to all who submitted questions that I used in this blog. It was a blast asking them for you..... Corinne

Hi Corinne

Thanks very much for offering to ask Dr P questions. I have one - a bit obscure I'm afraid. Some of us have been discussing mannose binding lectin (MBL) deficiency on another thread

http://forums.phoenixrising.me/show...t-breakthough-possible-MBL-deficiency-and-CFS

and it seems that quite a few have low or non-existent MBL. It's a primary immune deficiency. No-one seems to have looked at it in relation to ME.

Could you ask him please if he tests for MBL deficiency,and if so do his patients show low levels?

Thanks again. Hope you're doing OK.

Jenny

 

Hmmmmmmm...doesn't anyone have a question they would like to ask Dr.P? Bring them on!
A big thanks to all who submitted questions that I used in this blog. It was a blast asking them for you..... Corinne

I do Corrine. What does he feel is the safest and most effective anti-inflammatory for us? Immune suppression can be detrimental with all the infections and because of this, I would think steroids are out. NSAIDS exacerbate the Leaky Gut, and Natural stuff like Curcumin doesn't touch the inflammation. So, other than the obvious need to treat the cause of the inflammation, what can we do meanwhile to treat the inflammation?

Thanks much

 

Corrine,

I have a question for Dr P:

When does he think that we will have a biomarker? We won't hold him to it, but just in general - this year, within 2 years, 5 years?

And if I could ask a follow-up, Dr. Lapp has noted that several of his patients do not have fingerprints, the tips of the fingers are either shiny or "pruned" looking (as when you get out of the bathtub). Does he agree, and could that be used as a quick indication of CFS in the clinical setting, until we get a more scientific biomarker?

Thanks!

 

Corinne, in one of your previous blogs you shared how you asked dr Peterson why you felt much worse after looking at the computer screen for too long and he said it was due to cytokine storms. Do you mind me asking what is a cytokine storm and why does the computer bring them on? I also feel much worse, especially increased pain, if I spend too long on the phone. I presume this is also due to a cytokine storm?

Big thank you

 

Hi Corinne

Thanks very much for offering to ask Dr P questions. I have one - a bit obscure I'm afraid. Some of us have been discussing mannose binding lectin (MBL) deficiency on another thread

http://forums.phoenixrising.me/show...t-breakthough-possible-MBL-deficiency-and-CFS

and it seems that quite a few have low or non-existent MBL. It's a primary immune deficiency. No-one seems to have looked at it in relation to ME.

Could you ask him please if he tests for MBL deficiency,and if so do his patients show low levels?

Thanks again. Hope you're doing OK.

Jenny

thank you Jenny.

I'm doing well...and yes, I will ask him. Thanks, again!

off to get a saine IV !

corinne

 

I do Corrine. What does he feel is the safest and most effective anti-inflammatory for us? Immune suppression can be detrimental with all the infections and because of this, I would think steroids are out. NSAIDS exacerbate the Leaky Gut, and Natural stuff like Curcumin doesn't touch the inflammation. So, other than the obvious need to treat the cause of the inflammation, what can we do meanwhile to treat the inflammation?

Thanks much

I love this question, Tristen..thanks! Dr P knows I take daily Aleve because of my head pain and I have asked him if I should be concerned and he hasn't said I should, so i continue. However I did think about it's affect on my gut...but I've gotta take somehthing and like you said, supplements just won't do it.

Great question,
corinne

 

Corinne, in one of your previous blogs you shared how you asked dr Peterson why you felt much worse after looking at the computer screen for too long and he said it was due to cytokine storms. Do you mind me asking what is a cytokine storm and why does the computer bring them on? I also feel much worse, especially increased pain, if I spend too long on the phone. I presume this is also due to a cytokine storm?

Big thank you

Very interesting as my friend and I who I spend countless hours over the phone both agree that it triggers "migraine -like headaches" in us afterwards...just like the computer! I will ask Dr P about this, and my assusmption is that the phone also triggers cytokine storms...maybe any brain-exercise does??? I'm trying to do my taxes right now, and that seems to be causing the same thing! I'm not sure exactly what cytokine storms are...(maybe Cort can help here)...but I would assume it's like what I read once about what Dr Klimas said about the big drops in BP we experience as a result of our OI...she said it triggers inflammation and my guess is that inflammation triggers the rapid and increased release of cytokines....and thus the "storm" with it's resulting affects :-(

 

Recieved my first sub Q gamma (Hizentra) yesterday. No negative affects...so far! I'm exhasusted from the orientation, etc...all the talking with the nurse, but nothing else...so wish me luck. I'll be doing it once/week and hopefully will have some results to share in the next blog

Feel good!
Corinne

 

Good luck Corinne

Thanks for your reply to my question about cytokine storms. I wondered why the computer triggered them. I thought as spending too long on the computer or phone increase my symptoms it might be something to do with the electric magnetic radiation (or whatever it's called), but do you think Dr Peterson means it more just to do with the fact you are having to use your brain more? Thank you.

 

Thanks for your great blog posts Corinne!
I have two questions for Dr Peterson if you don't mind passing them on:

1) Does he have any guess as to what the root cause of our low NK cell function is (usually single-digits) and are they ever as low as ours are in any other diseases?

2) A lot of patients have noticed that their symptoms are increased when in moldy locations and decreased in dry, outdoor locations. Does he have any idea of why that may be true?

Thanks!

 

Thanks for your great blog posts Corinne!
I have two questions for Dr Peterson if you don't mind passing them on:

1) Does he have any guess as to what the root cause of our low NK cell function is (usually single-digits) and are they ever as low as ours are in any other diseases?

2) A lot of patients have noticed that their symptoms are increased when in moldy locations and decreased in dry, outdoor locations. Does he have any idea of why that may be true?

Thanks!

You are welcome re the blog. Thank you for your kind words. I will print out these questions and pass them along. thank you again for your interst and contributing to "Picking the doctor's brain"

 

Good luck Corinne

Thanks for your reply to my question about cytokine storms. I wondered why the computer triggered them. I thought as spending too long on the computer or phone increase my symptoms it might be something to do with the electric magnetic radiation (or whatever it's called), but do you think Dr Peterson means it more just to do with the fact you are having to use your brain more? Thank you.

I am not sure about why the inflammation response would be triggered by the compputer or too much phnne talking. With the drop in BP from OI it makes sense that the body would trigger that response as a big drop in BP signals somethings very wrong. I am just assuming, from my experience, since all exercise exacerbates my symtoms, that brain exercise would also...like reading too much, or too muuch visual or aural stimulation does. And I don't believe a land line phone has EM waves...or does it?
I will ask him becasue I am curious also.

thanks for your interest and contribution

Corinne

 

What I would like to know is what he thinks the ME subsets are and whether he treats patients differently (beyond treatingfor diffent herpes virus reactivation). Also thank you for his work.

 

I am not sure about why the inflammation response would be triggered by the compputer or too much phnne talking. With the drop in BP from OI it makes sense that the body would trigger that response as a big drop in BP signals somethings very wrong. I am just assuming, from my experience, since all exercise exacerbates my symtoms, that brain exercise would also...like reading too much, or too muuch visual or aural stimulation does. And I don't believe a land line phone has EM waves...or does it?
I will ask him becasue I am curious also.

thanks for your interest and contribution

Corinne

Thanks Corinne. If the computer and phone just trigger cytokines storms because you use your brain more, this would make sense but my confusion is I can read a book for an hour or so with no increase in symptoms but I can only be on the phone for ten minutes before my symptoms increase hugely, especially my chronic head pain. Some days i cant use the phone at all. I also actually can never have the phone to my ear and always have to have it on speaker phone. Likewise I can only look at the computer screen for ten minutes at a time, even less if reading a body of text, before my symptoms in increase, especially head pain. I can read text on my I phone for much longer than a computer screen before my head and body pain increases. Presume that is something to do with less light as I phone screen so much smaller. I'm afraid I don't know whether landlines emit emf waves, very ignorant I'm afraid.

Thanks for taking an interest in this though and I'm really pleased you are willing to ask Dr P about this as I'm very curious.

 

I'm afraid I don't know whether landlines emit emf waves, very ignorant I'm afraid.

Cordless phones emit a lot of EMFs. Every time you pass between the base of the phone and the phone itself, you are walking through radiation.

Even though the cordless phones are so much more convenient, I switched to a phone with a cord to avoid this. I believe you can get cordless phones in Europe (and maybe the UK?) that switch off emitting EMFs when they are not actually in use.

They are not available in the US as far as I know.

Best,
Sushi