2nd Peterson Appointment--XMRV

[firefly]

Thanks, Joey. You've answered a lot of questions for me.

I enjoyed your writing. Like you, I've been hell bent on recovering. I got sick about 2 years ago, at a time of stress and after a herniated disk had me on my back for a week. Things started going downhill from there, with lots of brainfog, sleep disturbance, fatigue. I went from running, climbing or working out every day to barely being able to stand for more than an hour. After all blood test results, MRIs, etc. came back normal I went ballistic, and it took me 49 days to get a diagnosis of POTS from a Harvard hospital. Step 1.
Step 2, I started investigating alternative treatments and though did not think there was a viral connection involved, went on Dr. Enlander's hepapressin injections and Teitelbaum's multivitamin powder. After a year and little progress I went to Mayo to see Dr. Low, knons as the best POts and ANS doc out there. They confirmed the diagnosis, ruled out AcHR antibodies, and suggested Mestinon. But I held off on the Mestinon and at this point, tried something ridiculous, after reading of a British olympian (Anna Hemmings) who recovered using Reverse Therapy. I'm now 10 months into it and I'd say I'm back to about 65 percent of where I started. I can think straight most of the time. I've been running 20 minutes, every other day or so, and doing yoga 3 time a week. Reverse Therapy has been key: I went into it very skeptical, but have been impressed. I'm basically learning to reformat the way I think and process emotion. One of the things I realized was that I was being incredibly hard on myself, self criticial, self-driving when I got ill. I don't believe that is what got me sick. But it certainly increased my stress level, and the cortisol connection makes sense now.

Anyhow, I'm going to get in touch with Mayo in the next few days. They did a research study on my cytokine levels when I was out there, but have not heard the results, and now I am curious. And of course I'm curious about XMVR. Frankly, I think I'd rather not have it. But that of course is irrelevant -- it's either there or not whatever my wishes on the matter.

Ok. All for now. Thanks Joey for the inisightful write up. And thanks to all of you for a great forum.

 

[Aftermath]

Thank You for Sharing

m0joey,

Thanks so much for sharing. It is first hand information yours that is fast making this forum the place to be for quality information about ME/CFS.

I got sick very suddenly with a brutal infectious component during a high stress period when I was working 18-20 hours a day and refused to rest and let the infection subside. Still, despite extensive testing for pathogens, nothing--and I mean nothing--has come up. I have, however, had a positive SPECT scan and tilt test.

I really hope that there is some light at the end of the tunnel for me at some point, as every single thing thusfar has come up dry.

Please continue to keep us updated with your progress.

 

[mojoey]

cfs since 1998

Yes just got the PCR test done

 

[acer2000]

Very interesting. But ugh, AZT? I hope there are better drugs with less side effects.

Did he suggest your past "partners" be tested as well? Any more on the transmission angle? Where did he think you got it? I'm glad he thinks its not very transmissible sexually, but it would be nice to be sure about this... :-/

Also, regarding the cortisol receptor. I think many infections have this, so its not all that surprising. In fact one of the ways they get latent infections to multiply in culture is adding cortisol. And even when talking about non-CFS infections, cortisol can make them much worse.

Of course, cortisol is essential to life, so a treatment regime that aimed at recuding cortisol wouldn't work too well. One of the biggest drivers of cortisol release is GI infection as well - so that angle might actually still have legs with respect to "what activated my illness". We'll have to see I guess.

But it does shed some light on why people report getting ill after long standing stress in some cases. In my cases it took 2 years of intense 80 hour weeks at work plus an emergency major surgery and emotional fallout from that and a bad relationship to trigger it - if that even had anything to do with it. So basically, if XMRV does cause this problem (which is pretty speculative at this point) - there is good evidence that under "normal" life stress it wouldn't reactivate if it was brought under control - perhaps even without treatment. Afterall - most of us were "well" without treatment - and under normal life stress, before this happened - right? One can hope this is the case...

Anyways, just pure rambling speculation on my part, thanks for the report!

 

[firefly]

Yeah, I too would love any more thoughts and information on transmission. That is one of the biggest issues on my mind right now.

 

[shiso]

Thanks

Just wanted to add my thanks to MoJoey for the fascinating report on your Dr. Peterson visit and your insights.

 

[Alexia]

Thank you so much Joey for taking the time and energy to share all this information with us. For the ones like me who live far from any good doctor it makes a huge difference that people like you care to share their experiences.

I'm really grateful to you.

 

[gracie]

question for mojoey

Hi Joey, I would like to know exactly what kind of ozone treatments you were talking about. I read some Italian forums where people w/cfs are now much better doing ozone autohemoptherapy. thanks gracie

 

[dannybex]

Hi Joey...

Add my thanks to the others here for your informative 'insider' report.

Very interesting that Petersen's chosen cohort came back as 90% positive, while other groups were 'only' 60% positive, yet Mikovitz said that all patients fit the criteria for both the Fakuda and Canadian definitions. That would suggest to me that there may be indeed subsets...

As if you don't have enough to do, I was wondering if you were planning on posting this over at CFSFMExperimental? You could always refer them back here if they wanted to ask questions...

???

d.

 

[mojoey]

hi gracie

I bought an ozone generator and do ear insufflation, rectal insufflation, and sauna. Probably the best wide-spectrum antiviral, antifungal, antibacterial. The photon treatment required purchasing nosodes for whatever bug I was treating after energetically testing for said bug, so definitely more physical labor/variable costs involved. Fixed costs for both are approx same.

 

[mojoey]

hey dan

great idea. Will do that right now.

 

[gracie]

joey & ozone

Thanks for your answer. I am going to start ozone autohemotherapy in Nov.
I will post to tell you how it works for me.

 

[Dreambirdie]

I have an Aranizer, not an ozonator. Can you use that instead?
And how do you do autohemotherapy? Please post info.. Thanks.

 

[mojoey]

gracie

Wanted to mention I don't think ozone is enough if you have ANS dysfunction. It will kill a lot of bugs, probably oxidize metals/toxins to make them easier to release--which only helps if you don't have substantial detoxification impairment. Most of us do, so binders need to be taken heavily. I take oral chelators 3 hours before or after the ozone treatment (to separate antioxidants from oxidating ozone). Binders can be taken immediately after.

With a sympathetic-dominant ANS, detox and immunity are both flawed. Ozone cleaned up my blood a little bit, but neural therapy and isopathics cleaned it up a lot more a lot faster.

 

[mojoey]

autohemotherapy

For those doing at-home treatments, rectal insufflation has 95% absorportion rate of autoheme. It's the closest you can get without going to a doc.

Also, I wnated to mention that not every does well with ozone. Some react horribly, probably because the stuff released has nowhere to go (due to detox impairment). Use with caution.

 

[gracie]

ozone autohemotherapy

They take some blood out of you ( usually about 250cc ) and inject ozone in it, then reinfuse it into you, like a blood tranfusion, but with your own blood. Ozone, as joey pointed out kills viruses & bacteria, so it would make sense, if we have the xmrv and possibly other viruses, that it can at least make some people feel better. I hope my very non scientific explanation is useful...

 

[gracie]

ozone

Hi joey, I am not familiar w/neural therapy & isopathics.. do you think I should do those before starting the ozone ?

 

[jenbooks]

ANS dysfunction: maybe we see a role for Reverse, Mickel, LP Gupta etc now...more or less depending on what is primary in you.

I guess meditation would be key.

However many of these CNS infecting pathogens upregulate your stress response, glutamate, etc. I had great sleep before lyme--fitful unreliable sleep ever since. So its all chicken and egg...

 

[mojoey]

Agree with Jen

It's definitely both, and treating both simulatenously really takes the guesswork out of the chicken & egg

 

[mojoey]

Also

Got some PMs about this thread getting off track, and I agree. Let's keep it XMRV-related from now on.