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

[ChookityPop]

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?

 

[ninauae]

so their is no cure for it

 

[mrmichaelfreedmen]

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

 

[Mimi81]

He has helped me a lot--even though I had already been sick for a very long time when I first saw him.

Sushi

Old post but cn you tell me more about KDM?

 

[Thefermiparadox]

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

 

[mrmichaelfreedmen]

What is smp? How do you get access to gcmaf? I want to try more treatments. Access and doctor guidance is an obstacle

You can buy the GcMAF cream:

https://gcmafplus.com/

I believe Rich (RIP) put together a simplified methylation protocol or SMP

 

[Centime Tara]

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]

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.

 

[Thefermiparadox]

You can buy the GcMAF cream:

https://gcmafplus.com/

I believe Rich (RIP) put together a simplified methylation protocol or SMP

Late thank you.

 

[Mimi81]

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]

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.

 

[Hufsamor]

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)

 

[Hufsamor]

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]

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.

 

[scarlet56]

I've reported many times at PR my family's improvements (I don't buy there's a cure, yet).

Here is the PR activity scale for reference:

My uncle, who was about 7 on the PR activity scale, now gives every appearance of being cured. He is a very active 70-something -- dancing, playing softball, working part-time. He has no symptoms and currently takes no ME/CFS treatments. He did about 8 years of heavy-duty antivirals under an ME/CFS specialist.

My daughter was somewhere between a 4 and a 5 on the PR activity scale and heading downhill rapidly when she first saw an ME/CFS specialist. Two years of antivirals (both Valcyte and Valtrex) put her into what might be called a remission. She lives a fairly normal life. She's just finishing graduate school in engineering, is getting married next summer, travels to Europe once or twice a year and does the usual tourist stuff including plenty of walking, has been on several day-hiking vacations. She has not had a PEM episode in several years. She does not try to do competitive sports or aerobic exercise for the sake of exercise, so I couldn't say if that would result in PEM. She still takes a large number of symptomatic treatments and takes antivirals more often than not. I'd say she varies between 8 and 9 on the PR activity scale. She is not cured, but lives a fairly normal life, which is huge.

I was at a 1 on the PR activity scale when I first got antivirals from an ME/CFS specialist. That improved my condition to around 3 or 4 over the course of several years, but I was still largely housebound for another few years. I moved to another ME/CFS specialist with a broader range of treatments to see if we could tweak symptoms enough to get more functionality. Over the course of 2-3 more years we picked away at other symptoms and tried a number of additional treatments, none of which gave me the big improvement antivirals did, but each gave me another small increment of improvement. All those little increments continue to add up. Now I'm about a 7 on the PR activity scale. I work full-time at a physically easy job, and take care of myself and my house, but I can't do much else. For example, moving recently pushed me into a PEM episode (my first in more than 6 months), but it was milder than previous episodes and I recovered more quickly than previously (about 10 days).

I continue to take a lot of treatments to maintain this level of functionality. This is definitely not cured or a remission. It's keeping up with activity management and a lot of symptomatic treatments to offset the symptoms of the illness. But being able to work full-time, socialize mildly, go grocery shopping without a cart/wheelchair, and so on, is FAR better than laying in bed, unable even to read, staring out the window.

My family has benefited greatly from seeing top ME/CFS specialists. For me and my daughter, treatment from top ME/CFS specialists made the difference between having no life and something resembling normal life. It's not 100%. It requires a massive amount of determination to keep up with all the treatments. It did not happen over night. I cannot emphasize that last too much -- significant improvement did not happen over night. It took years to get where we are now. It's a long, hard haul to get significant improvement, but well worth it to have a large chunk of life back.

Can you email me with the name of doctor? Was it dr d k in Washington state?