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

zzz

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

Yes, thousands of people have. The doctor is Dr. Jay Goldstein, who treated over 20,000 patients in his career. Unfortunately, he retired in 2003. This, of course, was long before the founding of PR, and the recovered patients simply went back to their lives, which is why they haven't been heard from. I have been quite ill for 16 years, yet I only found out about PR last year.

Dr. Goldstein stated repeated in his books that he was able to help all but two or three percent of his patients become asymptomatic or nearly so, especially in the last years of his practice. His books are full of case histories that contain many instantaneous remissions. (Dr. Goldstein never uses the word "cure".) A standard test of his would be to take a severe ME/CFS treatment, bring them into an instant remission with one of his medications, and then have them run around the block. If they could do that (which they usually could), he knew the treatment was working.

Although you don't see these stories on PR for the reason I mentioned, you can see some of them in the reviews of his books, Betrayal by the Brain and Tuning the Brain on Amazon.com.

So why aren't other doctors following his protocol? As people who have been around a while know, every doctor has his or her own ideas about ME/CFS, and that is what they specialize in. Also, Dr. Goldstein's work was so far ahead of his time that most doctors couldn't understand it. He had even more trouble getting funding requests than most CFS doctors, because the people reviewing his requests had no understanding of what he was doing. Dr. Goldstein details many more reasons why no one followed him in his books, as he was asked that question frequently.

Fortunately, his books contain all the knowledge necessary to implement his treatment protocol. But they need either an intelligent doctor who is willing to spend the time and energy to learn and use them, or an intelligent patient who is willing to do this on his or her own. It can be done; since I've started this protocol in August, I've gone from a 2 to a 5 on the PR activity scale. An Internet search reveals other people who have achieved complete remissions from following his books alone. I've been slowed down by the fact that I could tolerate almost no drugs when I started, but the Goldstein protocol has been allowing me to gradually overcome that limitation, and in doing so, gradually bootstrap myself up into more powerful treatments.

For more information on PR about Dr. Goldstein and his treatments, along with some very interesting case histories, I would recommend the thread Dr Jay Goldstein's Instant Remission ME/CFS Treatments. I would also recommend searching all the forums for "Goldstein" with author "zzz" to find my other posts, which are in various different places.

Like others, I have seen no evidence that a permanent cure is possible. But as mentioned by Hip, I know from my own experience that long term, complete remissions are possible, and I feel that I am well on my way to my next one.

All of this may sound to many like it verges on the unbelievable, or is simply straight-out unbelievable. My answer is that you need to read the books, and read them carefully. Dr. Goldstein's previous book, Chronic Fatigue Syndrome; the Limbic Hypothesis, is also very valuable, and highlights the connections between the central nervous system and the immune system of which many people are unaware. Recent research has been uncovering even more of these links. Dr. Goldstein used a complete neuroendocrine immune approach, thereby addressing all aspects of ME/CFS, but it takes a close reading of his books to understand how he does this. For those who are up to this task, the rewards can be incredible. For example, for those who know his work, it is clear that his approach and his methods are completely consistent with the findings of the recently-released Hornig/Lipkin cytokine study
 
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Dr.Patient

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The PR scale doesn't fit me too well (none of them really do). But using the PR scale as an approximation, I moved from about a 3 to a 6, though this is not a straight progression as some treatment protocols involve medications that have side effects that lower your functioning for a while.

I had the most clear linear progression in the first 2 years of seeing him because I hadn't yet started with these medications. Now it is more up and down, with occasional days of feeling really well, and other days of feeling side-effects. But the good days are better than anything I have experienced in many years and give me hope, though in the protocol I am in now, sustained progress is coming slowly.

Sushi

In the first 2 years of seeing him you were improving without starting his treatments?!?!
 

msf

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Folk, I think an interesting question would be why he went 'cuckoo' on Lyme...having seen the way KDM works, I think it's very likely that it has something to do with evidence, both from symptoms and several different tests, and not on a hunch.

Something I think people forget is that Dr. Lerner found Lyme in a significant proportion of his patients. Since Lyme tests are insensitive, the proportion with Lyme may actually be higher - whether it would be as high as the proportion KDM is reporting is impossible to say, but it would seem that Lyme is involved in a significant number of ME cases.
 

MeSci

ME/CFS since 1995; activity level 6?
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With whatever things doctors can do today, they can only improve the patient slightly.

No remissions or recoveries are possible with any doctor treatments.

If a treatment given by a doctor or by the patient himself causes improvements like a year later, it would be difficult to rule out spontaneous improvements.

In my opinion, if a given treatment does not make a noticeable improvement in about 3 months or so, the credibility of that treatment (vs.spontaneous improvement) is very much in question.

There are people who have recovered after a few years, and they attribute that to their own treatments, but here the recovery is spontaneous.

I can't agree that improvements that occur after about 3 months cannot be due to treatment. For example, if it is an autoimmune disease, it can take months or years for autoantibodies to stop being produced, once the trigger for their production has been removed. This has been explained by @Jonathan Edwards who has described the lifespans of various types of B cells involved in producing antibodies.
 

MeSci

ME/CFS since 1995; activity level 6?
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Maybe I should have asked what you mean by "recovery or remission" before I answered. :p

By 'recovery' I mean being well/symptom-free without having to continue treatment.
By 'remission' I mean feeling well/symptom-free, but still at possible risk of relapse.
 

MeSci

ME/CFS since 1995; activity level 6?
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Dr John Chia has reported some pretty good results from his oxymatrine treatment, for example, from fully bedridden to back to work for 3 years (what happened after those 3 years, I don't know) — see this post.

Thanks, @Hip for those links and summaries. Chia's patient referred to above would have been 62 after 3 years, so presumably retired, but it would of course be useful to know whether the improvement persisted.
 

MeSci

ME/CFS since 1995; activity level 6?
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This was the first time I had a metabolic rate test, using exhaled gases. My rate was way below normal.

Thanks very much for all this tantalising info, @alex3619.

Do you have your results from the above test, and/or can you interpret such results? I had one in 1995 as part of an Open University summer school, and my results are attached to this blogpost. But I was given to understand that they were normal, yet I consider that I was already in the early stages of ME at the time, so it is a puzzle to me.
 

alex3619

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Thanks very much for all this tantalising info, @alex3619.

Do you have your results from the above test, and/or can you interpret such results? I had one in 1995 as part of an Open University summer school, and my results are attached to this blogpost. But I was given to understand that they were normal, yet I consider that I was already in the early stages of ME at the time, so it is a puzzle to me.
In theory my results still exist. In theory. The hospital that did my SPECT scan only kept them for a few years, and then destroy them. The metabolic testing was done by the doctor himself, Dr Andriya Martinovic. Given his research interests he might still have records, but this was 22 years ago now.

He was using symptom checklists, autonomic measurements, and metabolic rate as markers to gauge how therapy was working, and adjusted accordingly.

Its hard for me to interpret your metabolic results. I am not sure I know enough about it. An expert (e.g. at Workwell) might be able to.
 

MeSci

ME/CFS since 1995; activity level 6?
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In theory my results still exist. In theory. The hospital that did my SPECT scan only kept them for a few years, and then destroy them. The metabolic testing was done by the doctor himself, Dr Andriya Martinovic. Given his research interests he might still have records, but this was 22 years ago now.

He was using symptom checklists, autonomic measurements, and metabolic rate as markers to gauge how therapy was working, and adjusted accordingly.

Its hard for me to interpret your metabolic results. I am not sure I know enough about it. An expert (e.g. at Workwell) might be able to.

Thanks.

I find it tragic how much medical/clinical data has been thrown away. It would be such a wonderful resource for researchers to collate and analyse.
 

parvofighter

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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.
 

SOC

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By 'recovery' I mean being well/symptom-free without having to continue treatment.
By 'remission' I mean feeling well/symptom-free, but still at possible risk of relapse.
Ah, I see. I would call that a cure or a complete remission. I don't believe that's achievable at this point in time, just like it's not achievable with MS, diabetes, or other chronic conditions. The only person I know who is apparently cured is my uncle and he only had mild ME/CFS -- never progressed to moderately or severely ill.

I have never heard a top ME/CFS specialist claim to be able to achieve cure or complete remission, although any of them may have some cases of full recovery/apparent cure. What the specialists I've heard talk say they can often (not always) do is improve patients' condition and functionality through symptomatic treatments. That appears to be achievable.
 

adreno

PR activist
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If ME/CFS got the funding of other illnesses, we could find the cure.
That's no certainty. Lots of diseases have no cure, even with lots of funding (HIV, MS, Parkinsons, ALS, etc, etc). I think diseases that can be cured are probably the exception.

With an advanced, complex disease like ME/SEID, it is probably unrealistic to expect a cure in the near future. Lots of diseases can be managed though, and this is where our hope lies, I believe.
 
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PennyIA

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Iowa
I achieved a really nice 9-month remission after phone consults with Dr Grover, www.revolutionarymd.com - an Integrative MD. I sought him out and found a referral on mthfr.net after trying and failing repeatedly to treat myself and/or work with a naturapathic doctor on methylation treatments. He ramped me up super fast on methylfolate and it helped tremendously. I was probably at the 90% of normal for me mark and with pacing was able to avoid PEM.

BUT - he didn't know anything about the deadlock quartet, balancing b vitamins, etc. I had a small crash after 9 months, tried again... crashed again... and I'm convinced it's about the lack of balance right now as I do feel better on my supplements, but I have to stop regularly to keep from crashing. And, even then, I had a bad crash last summer where I was bedridden again for about 8 weeks. I'm back-ish... I'm at around 50% right now of what I'd like to be.

He definitely doesn't have all the answers. But his aggressive approach on ramping up my supplements (against the grain for go low and slow)... did help a lot. I just wish I could have maintained that. I kept struggling with my own treatments as the go low and slow methodology didn't show any improvements and I didn't know what I could ramp up (or should... or in the end, shouldn't have).

I'm also fairly certain that I've exhausted his ability to provide valid input ... my last two calls with him didn't tend to help very much. I'm struggling with my PCP (local) as Dr Grover is about 10 hour drive away... and I really want to find someone local who is at least open to supporting me in my search for treatments even if they aren't an expert.
 

justy

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I would juts like to chime in that KDM did not tell me about the recovery rates suggested in some posts above. I asked him what my chances are and he said there was always hope and gave me a nice hopeful story to take away - he doesn't treat based on a protocol. but on the individual. He also told me he didn't care what the name of my illness was, or what I was diagnosed with - all he wanted to do was look for abnormalities and treat them in the hope of giving me a better quality of life, or if possible a return to normal life.

I have been unable to start any of his treatments due to developing mast cell/drug allergy issues after the first trial of an antibiotic, but I am happy to give it another go an will be going back at the end of this month.

I achieved an almost complete remission for about 9 years completely spontaneously early in my illness, so even that is possible - but I no longer believe it is possible for me now as so much else has started to go wrong in my body and I am a lot older.

This time around I went from a 2 on the scale to a 5 over a period of four years with aggressive resting (Dr Myhill) then 3 months of Armour thyroid got me to a 6 for a summer (Dr Skinner) Unfortunately the Armour then crashed me badly and since then have slid back to a 2/3 and not been able to climb out again.

You would have thought I would learn from all these ups and downs but im determined to try KDM's ideas and give myself a couple of years on his treatment to see what happens. If not a lot then I guess it is a question of moving to a bungalow nearer some people and family, getting a mobility scooter and getting heavily into embroidery.
 
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