Remission success. How?

[Seven7]

It's probably panchagavya, which is a fermentation product apparently consisting of a total of 9 ingredients, 5 of which are cow products:

Sounds like a oral fecal transplant. So
Would
Make sense to work. The challenge would
Be to see if the body can maintain the new bacterial balance for long, like the real ones do revert back.

 

[62milestogojoe]

EchoBravo flew back to Europe today in remission from ME. I have completed treatment except for nasyam. I am also in remission.

The interesting part now is to support ‘experiments number 4 and 5’ McTavish and theProf as they begin treatment and I will be using Oura to monitor improvement in sleep.

N3 sleep is disrupted in ME and is vital for good health since it is the prime time that Growth Hormone is released and cerebrospinal fluid detoxes the brain.

House boat is a nice idea!

 

[62milestogojoe]

Hi Seven
Those were my thoughts and I think I blogged a dna microbiology list of content of panchagavya on PR sometime in the past.

 

[Gingergrrl]

EchoBravo flew back to Europe today in remission from ME.

Wow, that is great news @echobravo! I hope you will share more with us once you are able.

I have completed treatment except for nasyam. I am also in remission. The interesting part now is to support ‘experiments number 4 and 5’ McTavish and theProf as they begin treatment and I will be using Oura to monitor improvement in sleep.

Best wishes to all of you.

House boat is a nice idea!

Please post pics when you do this

 

[echobravo]

Wow, that is great news @echobravo! I hope you will share more with us once you are able.

Appreciate it! I have seen improvements since my first ayurveda treatment in Varkala in Nov/Dec 2017, which continued when I went back for 6 more weeks of treatment in Feb/March 2018.

A small miracle happened there on March 22nd. During yoga (neckstand pose) a spontaneous adjustment happened in my upper neck on the left side. It was like a jolt of high voltage that numbed an area the size of a golf ball, and after that about 20.30 seconds an intense sensation like a "current" was flooding down along the side of my neck towards the upper trapezius. I immediately felt that my neck/head "sat straight" for the first time in decades. Returning to my hotel after the yoga I felt a "relief" in my upper spine and neck that enabled me to "walk straight" (I had forgotten how it felt).

The changes that happened after that have been unbelievable. In the first five weeks I was in a state of bliss. Longstanding pains (headaches, eye pain, neck pain, back pain etc) gradually loosened its grip. Some energy returned. Dysautonomia symptoms started to improve - basic regulatory functions related to heartbeat (waking up at night with racing heart), heat regulation (no tolerance for heat nor for cold), blood pressure regulation (POTS, OI), fluid balance, sleep issues (unrefreshed sleep, waking up at night), massive digestive problems, recurring infections. In beginning of May I went for a week to Budapest, it was a thrill, I had energy to walk around the city, to eat what I wanted, I could even tolerate some alcohol again.

I realized I was de-conditioned after almost 7 years of very little physical activity, and close to no exercise. Gradually, during summer, I increased my physical capacity by taking longer and longer walks in the mountains of the Norwegian west coast. In August I went for a demanding 8 hour walk. I started to believe I might be out of CFS for good.

A 10-week rehab Sept-Nov generously offered by the Norwegian health care system further increased strength and endurance. I had not realized to which extent I had been de-conditioned. My fatigue started already in 1993 (probably before), I had to quit my job in 2002, then tried another career/profession, which led to a collapse in 2015, and a continued worsening till I was partially bed bound from 2017 with increasing symptoms, no energy left and days of PEM just after very little activity. I could not hold a screwdriver over my head for more than 15-20 seconds. There was no strength nor energy in my body.

So what was the reason for all my symptoms?

I have come to believe that all my issues were related to "neurology" in the upper neck, in the junction between skull and atlas vertebrae. I belive my atlas was dislocated on the left side (C0-C1) and that the joint was relocated spontaneously during the "neck stand" yoga pose because of the weight of my whole body pressing down on my upper vertebraes.

https://en.wikipedia.org/wiki/Atlanto-occipital_dislocation

I was in a traffic incident when I was 13, bicycling downhill at high speed (55 km(h?) a car stopped in front of me, I smashed into it head first, and my jaw was crushed on the left side, teeth broken, I was in a coma for more than 24 hours. In the moment before the impact I had been able to turn my head slightly to the left, thus the sudden stop of the combined mass of my head/body as I hit the car, made my atlas joint dislocate on the left side (only 30% survive such head trauma causing a C0-C1 dislocation, in the majority of these cases the damages to the brainstem/spine cause immediate death (see Wikipedia above)). And this has gone undiscovered for the 40 years that have passed after this.

So, I believe "my kind of CFS" is related to caused by to upper spine issues affecting neurology (brain stem, vagus) in this area. The dislocated atlas has affected the brainstem (stretch, bend, pressure?) which has caused so many of the symptoms that developed over the years. Also the musculoskeletal effect of a slightly tilted and "dislocated" head has been gradually spreading down my spine over these 40 years - an endless source of pain, stiffness, lower back prolapse, hip pain etc - all of which have been improving since March 22nd.

Like @jeff_w and @JenB have reported, there might also be an element of CCI/AAI in my case, since the head trauma might have caused upper neck instability as ligaments were overstretched in the impact.

Interestingly, I also have a (family) history of a tendency to easily overstretch joints - had a surgery to stabilize a shoulder dislocation at 30, also my thumbs dislocate very easily. It is not the kind of hypermobility seen in EDS, though, but still interesting to read what has been written on the forum about chiari, EDS etc.

Lastly, for members who might want to check if their fatigue and other symptoms might be related to spine issues; there was a report from Germany where three people with CFS were found to have spine issues (cervical stenosis) in which cases surgery made them all well.

----------------------
The Springer paper is here:

"Improvement of severe myalgic encephalomyelitis/chronic fatigue syndrome symptoms following surgical treatment of cervical spinal stenosis"

https://link.springer.com/article/10.1186/s12967-018-1397-7

Their conclusion: "The prompt post-surgical restoration of more normal function suggests that cervical spine stenosis contributed to the pathogenesis of refractory ME/CFS and orthostatic symptoms. The improvements following surgery emphasize the importance of a careful search for myelopathic examination findings in those with ME/CFS, especially when individuals with severe impairment are not responding to treatment.

These findings were also discussed on PR i this thread:

"Recovery of 3 Severe ME/CFS Patients After Cervical Spinal Stenosis Surgery (2018 / Peter Rowe)"

http://forums.phoenixrising.me/inde...is-surgery-2018-peter-rowe.57544/#post-953691


I had forgotten my comment in that thread, dated Feb 5th 2018, just a week or so before I went back to India the second time (to have my atlas "relocated" during yoga);

"Makes me wonder if that car crash, the 40 years of chronic pain after (and who knows, maybe a spinal damage?), eventually contributed to getting ME.."

Also interesting to read the comment made by @Hip in that same thread;

"When you hear of these occasional cures of ME/CFS through yoga, it makes me wonder whether that might be because the yoga was able to fix an undiagnosed spinal stenosis that was causing ME/CFS."
----------------------

PS! I also wanted to add that those years of headaches, neck pains, eye pains, migraines etc, I now think they all orginated from upper cervical issues, and the correct diagnosis would have been "Occipital neuralgia".

WebMD: "Occipital neuralgia is a condition in which the nerves that run from the top of the spinal cord up through the scalp, called the occipital nerves, are inflamed or injured. You might feel pain in the back of your head or the base of your skull."

I believe spine issues should be investigated for anyone that have these symptoms of chronic fatigue, dysatonomias, pains related to neck/back/head.

PS! I also want to add that I went back to India in Nov/Dec 2018 to have my third round of ayurveda treatment. Don't forget that a Panchakarma procedure is all about REJUVENATION. And if, as one might come to believe, many cases of CFS originate from a neurological dysregulation of some kind (stenosis, brain stem compression, neuroinflammation..) then the rejuvenation of body tissues and anti-inflammatory effects that Panchakarma seems to have, would have a healing effect in such cases.

 

[echobravo]

There really is no evidence at all backing up that claim. Few anecdotes thats all.

My take on that (based on my own experience) would be that an Ayurveda panchakarma rejuvenation treatment of 3-4 weeks duration, gives more healing than anything the western medicine paradigm has to offer.

 

[echobravo]

I read traditionally panchakarma had been done up to 10 weeks. How is it done in Varcala? Just the minimum of at least 10 days?

I have just been at the Salubrious clinic in Varkala, following their 21-day panchakarma. They also have 31-day and 41-day panchakarmas, of which the 41-day treatment will give the most profound rejuvenating effect on all body tissues.

The rejuvenation process will supposedly continue for weeks, possibly months, after treatment is finished. A process that is also supported by the medicine you will usually bring home. Post-treatment it is important to continue to take it easy and avoid any stresses, since this is needed to allow the body to recover. So, it seems crucial to try to stay in that "parasympathetic mode" of the ANS - the "relaxed state" that the different ayurveda therapies (daily massage, steam, kizhi, shirodhara) seems so good at promoting during the course of a treatment.

 

[sb4]

@echobravo I am interested in the yoga head stand pose. What did it entail?

 

[echobravo]

@echobravo I am interested in the yoga head stand pose. What did it entail?

I am not sure if I can recommend anyone to try the neck stand pose on their own, it has a bad reputation of causing hernias etc. It can make things worse, depending on your physical constitution..

Gradually, over 5 weeks at a yoga hall in Varkala, I built up my strength to be able to stand upside down in the "neck stand pose" for longer and longer time. I had a hunch it was important. Suddenly, in week 5, as I was able to relax more and more in my neck, and could let more and more of my body weight "go straight into" my spine/head junction, it suddenly snapped into place like I explained above (it actually happened as I noticed my neck was not straight, and tried to adjust it).

Yoga Journal seems like a reliable source in yoga. Check out some of their articles on head stand.

https://www.yogajournal.com/practice/ask-expert-try-headstand-inversions-first-time

https://www.yogajournal.com/poses/3-prep-poses-supported-headstand

https://www.yogajournal.com/poses/challenge-pose-supported-headstand

https://www.yogajournal.com/poses/supported-headstand

I wouldn't try to do it on my own, though. Consult a yoga teacher.

 

[sb4]

@echobravo Thanks. Yeah sounds a bit risky doing on my own in my condition but I was thinking maybe a half version like this or similar. Just to get blood flow into the into the area.

 

[Gingergrrl]

A small miracle happened there on March 22nd. During yoga (neckstand pose) a spontaneous adjustment happened in my upper neck on the left side.

The changes that happened after that have been unbelievable. In the first five weeks I was in a state of bliss. Longstanding pains (headaches, eye pain, neck pain, back pain etc) gradually loosened its grip. Some energy returned. Dysautonomia symptoms started to improve - basic regulatory functions related to heartbeat (waking up at night with racing heart), heat regulation (no tolerance for heat nor for cold), blood pressure regulation (POTS, OI), fluid balance, sleep issues (unrefreshed sleep, waking up at night), massive digestive problems, recurring infections. In beginning of May I went for a week to Budapest, it was a thrill, I had energy to walk around the city, to eat what I wanted, I could even tolerate some alcohol again.

This is amazing and thank you for sharing more details with us @echobravo. I am very interested in stories where people have made significant improvement. I will never use the word "cure" or even "recovery" and am using "remission" in my case b/c I am still not confident that my situation is permanent. My situation is drastically different from yours but I feel that each case is unique (the triggers, symptoms, treatments, etc) and that each of these improvement stories hold valuable clues (that hopefully someone much smarter than I am will be able to piece together some day).

In August I went for a demanding 8 hour walk.

Good God, do you literally mean that you walked for eight hours straight? Can you remind me if at your worst you used a wheelchair or were you always able to walk? How severe was your POTS/OI at it's worst? I am amazed by your improvement level and may it only continue to improve in the months and years to come!

I have come to believe that all my issues were related to "neurology" in the upper neck, in the junction between skull and atlas vertebrae. I belive my atlas was dislocated on the left side (C0-C1) and that the joint was relocated spontaneously during the "neck stand" yoga pose because of the weight of my whole body pressing down on my upper vertebraes.

It definitely sounds like it by the severity of your car accident and initial triggers of the illness and by the neck adjustment leading to your remission! Did you have the standing MRI w/flexion/extension that showed CCI/AAI? (I don't at all mean that you need this to "prove" anything vs. out of curiosity).

So, I believe "my kind of CFS" is related to caused by to upper spine issues affecting neurology (brain stem, vagus) in this area. The dislocated atlas has affected the brainstem (stretch, bend, pressure?) which has caused so many of the symptoms that developed over the years.

I would agree. I was curious @echobravo, what percent of your remission would you attribute to the ayurveda treatments vs. to the neck adjustment?

Also interesting to read the comment made by @Hip in that same thread;
"When you hear of these occasional cures of ME/CFS through yoga, it makes me wonder whether that might be because the yoga was able to fix an undiagnosed spinal stenosis that was causing ME/CFS."

This is now fascinating to me, in retrospect, b/c at the time I remember being the most skeptical person on PR and thinking that there was not a chance in hell that yoga could lead to improvement. But it now makes sense that there are certain cases like yours where a neck adjustment could make all the difference (and of course other cases where it would not make any difference or would make the person worse).

I am not sure if I can recommend anyone to try the neck stand pose on their own, it has a bad reputation of causing hernias etc. It can make things worse, depending on your physical constitution..

I completely agree with you that this is much too dangerous for anyone to try on their own.

@echobravo Thanks. Yeah sounds a bit risky doing on my own in my condition but I was thinking maybe a half version like this or similar. Just to get blood flow into the into the area.

I agree and I would not even try that "half version" on your own @sb4 and it is too risky IMO.

 

[sb4]

I agree and I would not even try that "half version" on your own @sb4 and it is too risky IMO.

I'LL DO WHAT I WANT, YOU'RE NOT MY REAL MOM!

[Runs away crying]


In all seriousness I am probably going to end up trying the chair version but backing out when trying to get in the right position is too much excercise. I am probably around 100kg now and when I was healthy I was 63kg so that wont help either.

Interestingly enough I read on another forum not related to cfs that one guy got the most health improvements from just hanging upside down for a few minutes. He speculated that it was stretching the spine and increasing blood flow. This seems safer although I have no apparatus to do it.

 

[echobravo]

@echobravo I was thinking maybe a half version like this or similar. Just to get blood flow into the into the area.

Using props like that should make the neck stand a safer option.

Regarding blood flow.. are you trying to counter the effects of orthostatic intolerance, by getting more blood into brain/head?

 

[sb4]

Using props like that should make the neck stand a safer option.

Regarding blood flow.. are you trying to counter the effects of orthostatic intolerance, by getting more blood into brain/head?

Mainly just to see if I feel different during or after. As you know there is a lot of interest about CCI etc being causitive for many of the symptoms of dysautonomia/CFS. I am not sure if this is the case in me but I definitely am interested in trying.

I laid down with legs raised and head lower today as I read on a thread but noticed nothing really. I might try the headstand soon but feel bad today for some reason.

 

[taniaaust1]

Hi Mattie
You don’t think 100 minutes N3 sleep in a treated ME patient versus 17 minutes in an untreated patient is any kind of empirical evidence???

I don't as some of us have sleep issues worst than others and hence its hard to compare one ME/CFS patient with another. You need to compare the same person with before and after treatments but keep in mind that symptoms with this change (I have many ME symptoms I no longer get, not due to anything I did but the illness just changed) , so hence there needs to be a group doing it with each comparing before and after.

Things like placebo affects also should be considered, hence in science control groups are used to compare, to find out if a treatment is helping or not.

 

[taniaaust1]

A small miracle happened there on March 22nd. During yoga (neckstand pose) a spontaneous adjustment happened in my upper neck on the left side. It was like a jolt of high voltage that numbed an area the size of a golf ball, and after that about 20.30 seconds an intense sensation like a "current" was flooding down along the side of my neck towards the upper trapezius.

I had that happen due to a chiropractor adjustment done on my neck which then suddenly fixed constant dizziness I'd had for quite a long time which I'd thought was due to the ME. Unfortunately only that symptom though was fixed.

I have come to believe that all my issues were related to "neurology" in the upper neck, in the junction between skull and atlas vertebrae. I belive my atlas was dislocated on the left side (C0-C1) and that the joint was relocated spontaneously during the "neck stand" yoga pose because of the weight of my whole body pressing down on my upper vertebraes.

Interestingly, I also have a (family) history of a tendency to easily overstretch joints - had a surgery to stabilize a shoulder dislocation at 30

Very interesting. It makes me wonder if a yoga pose could help me more too. When I read about how you got your neck injury it reminded me of my neck injury. I've had whiplash quite a few times and one of those occassions I had my turned like yours was when it happened (I actually was in a train crash disaster when I got the side on whip lash injury. I went to hospital for the injury).

I have a family history of what looks like EDS, my daughter appears to have that and I dislocated a shoulder one time when doing a swimming race. One of my specialists told me that he thinks I have a connective tissue disorder of some type.

 

[echobravo]

As you know there is a lot of interest about CCI etc being causitive for many of the symptoms of dysautonomia/CFS. I might try the headstand soon but feel bad today for some reason.

A couple of thoughts on this...

If CCI/AAI is causing symptoms, maybe one should be careful with any kind of stretching in the upper neck, because it could make ligaments / connective tissue even more "loose"?

Headstand...be cautious! I would guess it could cause a compression of lower brainstem and spine! Not what one wants to achieve in cases of CCI/AAI where brainstem compression seems be a major cause of symptoms.

 

[Gingergrrl]

I'LL DO WHAT I WANT, YOU'RE NOT MY REAL MOM!

[Runs away crying]

@sb4 I cannot tell you how much this made me laugh when I first read it (and still makes me laugh now )! You crack me up.

Interestingly enough I read on another forum not related to cfs that one guy got the most health improvements from just hanging upside down for a few minutes. He speculated that it was stretching the spine and increasing blood flow. This seems safer although I have no apparatus to do it.

That is interesting and I have also heard this before (but is not something that I have ever tried )!

As you know there is a lot of interest about CCI etc being causitive for many of the symptoms of dysautonomia/CFS.

This really makes sense and I think there is absolutely a sub-group in which CCI is at the root of their dysautonomia and even entire illness. In my own case, I do not have CCI (even though I had a neck injury, arm injury, and ongoing, chronic neck and arm pain). In my case, based on a lot of testing, we believe that my POTS and overall dysautonomia was autoimmune.

A couple of thoughts on this...

If CCI/AAI is causing symptoms, maybe one should be careful with any kind of stretching in the upper neck, because it could make ligaments / connective tissue even more "loose"? Headstand...be cautious! I would guess it could cause a compression of lower brainstem and spine! Not what one wants to achieve in cases of CCI/AAI where brainstem compression seems be a major cause of symptoms.

I still gotta agree with @echobravo and if you (or anyone) has EDS or lax ligaments in your neck, the headstand could end up making you worse. (... waiting for you to run away crying telling him that he is not your real dad LOL )

 

[62milestogojoe]

I don't as some of us have sleep issues worst than others and hence its hard to compare one ME/CFS patient with another. You need to compare the same person with before and after treatments but keep in mind that symptoms with this change (I have many ME symptoms I no longer get, not due to anything I did but the illness just changed) , so hence there needs to be a group doing it with each comparing before and after.

I very much agree. It’s tough to organise a trial in this environment with sufficient numbers of ME patients and controls. As it stands, the work being undertaken will provide a sketch of possibility, a preliminary picture. I am monitoring a patient of over a decade’s ME with regular Oura from initiation of treatment through to end of 3 weeks of treatment.

If we use Canadian guidelines for sleep, which of necessity has to be our gold standard then I believe we can at least target this aspect of ME using Oura to monitor sleep quality. Below are my results following treatment of 3 weeks. Subjectively, I can state this was a very good night’s sleep and the results back this up.

Below is the result of the patient undergoing treatment and the contrast in N3 sleep quality is profound. This is the patient being monitored on an ongoing basis.

The sketch does provide clear evidence of contrast but of course we hope to see the breakthrough into sustained deep sleep and I will update should that event occur. In 2016 during my first Ayurvedic treatment it was the breakthrough into N3 sleep that was the key to movement from severe to moderate ME into remission.

 

[sb4]

I should update to say that I did a half version of both the neck stand and the chair modified version. Both I could only hold for a minute or so before heart pounding got too much and lactic acid also. So this means I couldn't test it out sufficiently. I still want to try hanging upside down but cant think of a way to do it.

Getting into position with the chair was really hard and so I was at an angle when doing it. Getting into position with the normal version is surprisingly easy, just sit up and roll backwards letting the momentum carry your legs up. It helps if there is a wall behind you. Holding the position however requires strength that I don't have.