Has anyone achieved remission or recovery from treatment by any doctor?

ChookityPop

Senior Member
Messages
605
I was fortunate to receive high-dose IVIg in Germany (Pentaglobin), and within a week or so, had total remission for 2 months, including PENE (fluey post-exertional symptoms, inability to reproduce energy; etc), neurocognitive, cardiac (endothelial dysfunction & micovascular angina), orthostatic, pain, Raynaud's-like symptoms, sleep, etc.

I have also been fortunate to receive Deep Sequencing, so we now know I have a rare mitochondrial DNA deletion in "protein Complex V", also known as ATP Synthase. With this particular deletion, there is an "uncoupling" of oxidative phosphorylation, and the patient produces heat via a protein called Thermogenin, INSTEAD of the ATP they should. These worst mitochondrial symptoms, manifested in hot thighs after activity (all night - can't sleep most nights, even with ice packs on them), and pathological exhaustion, worse after activity, were also eliminated by Pentaglobin.

When I relapsed again in Canada, I was given high-dose Sandoglobulin according to Dr Jonathan Kerr's research on persistent Parvovirus B19 in "ME/CFS" (UK formulation, on trial in Canada at the time), and had the same total response, albeit for just a couple of weeks. I received 2 or 3 high-dose series, with the same response each time. A measure of how much it helped; I also had significant side-effects (horrendous headaches and high fever and paroxysmal coughing - reactive airways) in reaction to Sandoglobulin for the first few days, but I would do it again if I could get it, because of the relief of the M.E. symptoms.

If you look up key words, "IVIg, Jonathan Kerr, Parvovirus B19, Chronic Fatigue Syndrome", you can see his article on this, and most importantly the cytokines he tracked, along with PVB19 titers and clinical response. As I recall, his PVB19 patients were relatively new (within 3 or 4 years), but I still responded dramatically, and this was at about year 10. I asked for, but did not receive cytokine tracking.

I still receive IVIg, and while subsequent formulations significantly help, they have not had the same spectacular impact that Pentaglobin did. IMHO all IVIg formulations are not created equally. My cardiologist in Germany at the time provided this article which suggests that Pentaglobin has a unique anti-inflammatory effect due to its formulation. Pretty credible source: Science magazine. Here is an excerpt:

"Recent studies have demonstrated that the anti-inflammatory activity of IgG is completely dependent on sialylation of the N-linked glycan of the IgG Fc fragment. Here we determine the precise glycan requirements for this anti-inflammatory activity, allowing us to engineer an appropriate IgG1 Fc fragment, and thus generate a fully recombinant, sialylated IgG1 Fc with greatly enhanced potency."

The link: https://www.sciencemag.org/content/320/5874/373.short?related-urls=yes&legid=sci;320/5874/373

Would post more, but am simply not up to it. If you look up some of my much older posts, you might get more granularity.
Incredible story!

Can I ask what your sympoms and how severe your illness was like before and after Pentaglobin?
When you say hot thighs was it accompanied with a horrible lactic acid type feeling and dicomfort?
 

mrmichaelfreedmen

Senior Member
Messages
173
Location
Australia
It is a fundamental question. I think that's the reason why many do not see any doctors, due to the absolute lack of reported success.

I've yet to see or hear from anyone who actually "recovered" , whatever that means. Those who have reported "recovery" are the ones who had another medical issue altogether.
Absolutely agree
 
Messages
18
Location
Portland, OR USA
There are small studies/presentations on drs' own patient populations.
That I remember KdM has published some numbers regarding the use of Gcmaf

Cheney also.
http://mdwme.blogspot.it/2013/04/dr-paul-cheneys-latest-observations.html

I forgot about Dr Nathan's and Rich SMP methylation study
http://www.mecfs-vic.org.au/sites/w...Article-2009VanKonynenburg-TrtMethylStudy.pdf

But also Dr Lerner's longitudinal studies on treating chronic infections
http://www.treatmentcenterforcfs.com/clinical_patient_study/index.html

Those the ones I remember.

In my own case, I started to improve only with treatments for which there was some, however small and imperfect, study backing up that treatment (i.e. abx for lyme cpn, gcmaf, smp).
What is smp? How do you get access to gcmaf? I want to try more treatments. Access and doctor guidance is an obstacle
 

Centime Tara

Senior Member
Messages
178
I just reread this whole thread to be sure I hadn’t missed anything. It’s discouraging that it seems the only thing we can do is deal with symptoms while the roots of the problem remain a mystery. I’m grateful to all of you who have attempted to answer this crucial question.
 

Carl

Senior Member
Messages
445
Location
United Kingdom
so their is no cure for it
My research shows that is not true. It is just extremely resistant because of a biofilm. Everyone should stop experimenting until you are aware of what you are dealing with. I don't believe that everyone actually has M.E. or Fibro because some have other misdiagnosed conditions and some might have mental health conditions such as atypical depression. Diagnosis is so inadequate IMO.
 
Messages
33
Location
Sweden
Incredible story!

Can I ask what your sympoms and how severe your illness was like before and after Pentaglobin?
When you say hot thighs was it accompanied with a horrible lactic acid type feeling and dicomfort?
Wher in Germany you got this treatments. Which dr or klinik? Plese. I live in Germany
 

Hufsamor

Senior Member
Messages
2,803
Location
Norway
I’ve been a bit reluctant about whether or not I should post this.
This treatment is not easy accessible, it takes a loooong time, it requires effort and it’s only based on a theory. On the other hand, the results are good.

Please bear with me. I’m not sure I’ll be able to post it all at once.
 
Last edited:

Hufsamor

Senior Member
Messages
2,803
Location
Norway
The theory is that the main problem with lack of energy is due to an incorrect position in the neck, primarily at the atlas/axis. This leads to a strong imbalance in the autonomic nervous system.

(I copied the illustration from the internett, it’s made by msd manual. They have no connection to the theory or the treatment)

IMG_4718.jpeg
 

Hufsamor

Senior Member
Messages
2,803
Location
Norway
The treatment is about correcting the position of atlas / axis and to keep it in place.
To achieve that, a physiotherapist corrects and stretches the back, all the way from the pelvis and up to the top of the neck. Over and over, until the back is straight and the altas and the axis will be keeping its correct position.

You need to do exercises every day for the first year, and later at least every second day, for the rest of your life, to support the treatment, to keep on stretching and strengthening.

The way back to recovery is sometimes fast but just as often it’s slow. The body needs time to adjust and heal.
 

Sing

Senior Member
Messages
1,784
Location
New England
Perhaps an inversion table would help too? In addition to the daily stretching and exercises. This corrective attention to the body is helpful for me, both for circulation and some relief from upper body pain (I have got it all over) and brain fog. But it is not a cure all. Nothing has been, over the 28 years of ME.
 
Back