Remission success. How?

[echobravo]

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).

Must be worth checking out!

I assume you have read the recent accounts of several PR members that have gotten a diagnosis of CCI/AAI?

jeff_w's story on how CCI/AAI caused brainstem compression. And how fusion surgery seems to have resolved his ME, PEM and POTS symptoms.

https://www.mechanicalbasis.org

Jeff_w's posting from Jan 2018..

https://forums.phoenixrising.me/ind...instability-cci-as-a-cause-of-your-cfs.56908/

"It turns out that I have cranial settling, with my skull sinking downward onto my spine, causing brain stem compression. This sinking downward isn't outwardly visible, so you couldn't tell from just looking at me. (This sinking downward also is not a Chiari Malformation, but it is similar, as it can result in cerebral spinal fluid problems as well as autonomic nervous system issues.)

I needed an upright flexion-extension MRI to find the problem, and I then needed to send the MRI image to a knowledgeable neurosurgeon, as the radiology report was negative. The MRI revealed to the neurosurgeon that my skull has been sinking down into my spine, due to lax ligaments from Ehlers-Danlos Syndrome (EDS). The result is brain stem compression. My spine is protruding into my skull, touching my brain stem and compressing it. This is not supposed to happen! This causes many neurological problems, such as in fatigue (PEM-type), POTS, etc.

As for the immunological signatures unique to CFS/ME, it could be that neurological compromise results in specific immune disruption. Our nervous system and immune system are intertwined. A deficit in one system can result in the other system becoming abnormal."

 

[echobravo]

Hi @Gingergrrl , thanks for your interest and sorry for this late reply (browser issues).

> 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.

Having had the fundamental experience of a body that fails to function at the most basic level - energy production - I am sure we will be "marked" for the rest of our lifetime. I hope your recovery will LAST! I am determined that mine will (by act of will and gradual rehabilitation). Going back to this nightmare is not an option.

> but I feel that each case is unique (the triggers, symptoms, treatments, etc)
> and that each of these improvement stories hold valuable clues

If severe fatigue indeed has different causes for different people, then these recovery stories might give people an idea in which "category" they might belong.

My "category" (upper neck/spine neurology) was certainly not the worst among the severely fatigued, but enough that about one year ago (before my first trip to India for ayurveda) I saw little hope for my future - could not work, no social life, exhausted, partially bed bound, PEM for nothing, dysautonomias, moved back to my parents.

> Good God, do you literally mean that you walked for eight hours straight?

Yes, about 5 months after the left-sided "neck adjustment" I did a 8 hour hike, up into 1000m height, then back to the fjord. Pretty exhausted. But, what a victory!

> Can you remind me if at your worst you used a wheelchair or were you always able to walk?

I was always able to walk. Though, increasingly I got exhausted from trying to walk, especially uphill. I would be bed-bound typically from 1-5 pm, sleeping.

> How severe was your POTS/OI at it's worst?

I would get very dizzy (black-out) from standing up. Blood pooling (swelling) in my feet. Probably my OI had been going on for years without me realizing it - headaches, lightheaded, unwell, coathanger-pain - after standing up for a while.

> and by the neck adjustment leading to your remission!

It was a miracle (serendipity I am very fortunate. And I know I should be more grateful. Long-standing CFS & dysautonomias change us, doesn't it..the years of worry, fear, pain, loss of health..how can we break free of the defeat of these experiences..the anxiety, depression...and be optimistic, active and hopeful individuals again...

> Did you have the standing MRI w/flexion/extension that showed CCI/AAI?

I tried to have this type of examination in the summer. But my MD's application was turned down by the 2nd line neck specialists in Oslo university hospital. Sorry, but I cannot spend more of my energy on the dysfunctional arrogance of Norwegian Health Care It would be destructive now..I need to focus on getting stronger, try to put all the disappointments of doctors, colleagues, family, friends behind me. All the people who did not listen, did not understand, did not try to help.

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

The C0-C1 dislocation was the primary cause, and I would not have had this level of healing without it's "relocation".

However, I had some amazing results 1+ year ago during my first ayurveda treatment (6 weeks). Something fundamental happened there, and I think it must be the rejuvenation effects of the Panchakarma that somehow caused a repair/rebuild of affected tissue (neurology, muscles etc).

EDIT: Here is what I wrote one year ago (Dec 30th 2017) after my first ayurveda treatment in Varkala: https://forums.phoenixrising.me/ind...second-stage-trial-success.56860/#post-944640

If my upper neck/brainstem/spine was aggrevated (pressure, bend, stretch, compression) by a long-term atlas dislocation, this might have caused irritation/inflammation that has spread both up and down the spine, causing dysautonomias, memory problems, brain fog, digestive issues (vagus?), gland dysfunction etc.
Panchakarma is about rejuvenation and it seems to have a strong anti-inflammatory effect.

So, as a part of my long term rehab plan, I went back to India in November and had the 3 week Panchakarma again, because I think I have had tissue "degradation" at many levels (neurology, muscle athropy, spine, ANS, digestion) during these years of illness and decline. Weaknesses that now needs to rebuild (hope it is possible! memory, cognitive capacity...).

> 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.

Hehe, well, yoga can be amazing (I am living proof.

Also, the stress-reducing effects of yoga must be very useful in cases of ME and FM. The constant stress, fear and worry (for some pain too) caused by this terrifying condition contributes to "grind us down".

The ANS needs to be in a state of "rest and digest" for the body to recover, rebuild tissue, rejuvenate. Maybe the most important lesson I have had from Ayurveda treatment.

Best wishes for the New Year!

 

[Gingergrrl]

Hi @Gingergrrl , thanks for your interest and sorry for this late reply (browser issues).

Please do not worry about a slow reply and your story is very interesting to me. I am following closely the stories of remission that I read on PR (even though each one is completely unique and what works for one person will not work for another).

I hope your recovery will LAST! I am determined that mine will (by act of will and gradual rehabilitation). Going back to this nightmare is not an option.

Thank you so much and I feel the same way. My doctor has no idea if my remission will last (but I appreciate his honesty and do not want false hope). I am proceeding with plans in 2019 as if it is going to last but am proceeding slowly and taking many precautions in case it does not.

then these recovery stories might give people an idea in which "category" they might belong.

This is my feeling as well.

Yes, about 5 months after the left-sided "neck adjustment" I did a 8 hour hike, up into 1000m height, then back to the fjord. Pretty exhausted. But, what a victory!

Wow, this is amazing! I am planning to attempt to walk one mile soon (at a slow pace on a flat surface without any hills) and am hoping that I can do it!

I was always able to walk. Though, increasingly I got exhausted from trying to walk, especially uphill. I would be bed-bound typically from 1-5 pm, sleeping.

Thanks and I was just curious. I was not able to walk for approx 3.5 years and used a motorized wheelchair inside my home and was pushed in a regular wheelchair whenever I went out. I was never paralyzed in any way and could always transfer from the wheelchair to the bed, sofa, toilet, car, etc, on my own. But I was only able to stand for about 30-60 seconds due to the combination of severe POTS, shortness of breath, and muscle weakness (all of which are now gone b/c of my treatments). I never needed to lie down from exhaustion per se but I needed to lie flat due to POTS in order to stop the tachycardia and shortness of breath (at that time).

Long-standing CFS & dysautonomias change us

I totally agree. My experience of the last 5-6 years has made me acutely and intimately aware of, and connected to, the "hidden illness community" which is spread throughout the world. If and when I return to my career as a social worker, I intend to focus on this community (although I still am not sure exactly how).

I tried to have this type of examination in the summer. But my MD's application was turned down by the 2nd line neck specialists in Oslo university hospital. Sorry, but I cannot spend more of my energy on the dysfunctional arrogance of Norwegian Health Care It would be destructive now..I need to focus on getting stronger, try to put all the disappointments of doctors, colleagues, family, friends behind me. All the people who did not listen, did not understand, did not try to help.

I agree that you should not waste any more of your precious time with doctors/others who do not take your situation seriously and are not willing to help you. Do you live in Oslo?

The C0-C1 dislocation was the primary cause, and I would not have had this level of healing without it's "relocation".

That was my sense from your story but wanted to be sure.

However, I had some amazing results 1+ year ago during my first ayurveda treatment (6 weeks). Something fundamental happened there, and I think it must be the rejuvenation effects of the Panchakarma that somehow caused a repair/rebuild of affected tissue (neurology, muscles etc).

This makes sense, too. My case was extremely different from yours and the core treatments that led to my remission were high dose IVIG and Rituximab. But there have been many other things that contributed (on a smaller level) to my improvements like medications for POTS, MCAS, mold detox, etc.

Hehe, well, yoga can be amazing (I am living proof.

You are definitely living proof! My prior attempts at yoga (even when I was completely healthy) were disasters and it was beyond my level of capability. But I am currently doing Pilates once a week as part of my physical therapy and am really enjoying it (but it would not have been possible prior to my remission).

Best wishes for the New Year!

Thank you so much and to you, too!

 

[echobravo]

I am following closely the stories of remission that I read on PR

Hi, again! If you have an overview or index of these recovery stories...would it be possible to put them up on PR? Maybe it already exists..

but am proceeding slowly and taking many precautions in case it does not.

I was not able to walk for approx 3.5 years

You have been in a very demanding situation, I cannot imagine...I hope you now will continue to improve! And gradually build strength again from the many years of de-conditioning. I under-estimated to what extent my body had weakened.

and connected to, the "hidden illness community"

Maybe this will be your mission going forward. It will mean a lot to the many affected.

the core treatments that led to my remission were high dose IVIG and Rituximab

Was there some sorts of immune deficiency that caused inflammation, auto-immunity?

I also had these markers of low IgG, IgM etc, but the doctor's here never acted on it. I think these were symptoms of a systemic failure at a "higher level", involving the CNS, that affected basic body functions, leading to constant allostatic load hence damage and dysregulation to the body in so many ways.

But there have been many other things

Yes, I have tried so many supplements, diet interventions from 2014 and onwards. But, there was a "bigger picture" that caused "system failure" at a more fundamental level, and no supps nor medication in the world would have fixed that.

Do you live in Oslo?

Not anymore. But not too far either. North, closer to the skiing areas

beyond my level of capability

Yoga can be so many things. 10 minutes of the Sun Salutation per day will go a long way. Hatha and Yin yoga are calmer variants, that reduces stress and has potential to invoke the "relaxation response".

Pilates once a week

Heard good things about Pilates Enjoy it!

 

[Ineedausername]

Wow this is fantastic! Sending the best of luck to the two who are still in the treatment process.

Absolutely elated to read about the remission stories here and long may it continue.

 

[matt321]

I wish more people knew to follow eastern medicine for recovery. Most seem to think of yoga as an exercise and do not research it thoroughly. It puts the body back into energetic alignment.

 

[62milestogojoe]

I agree with you. Tai chi is my preferred exercise and seems to calm the ANS

 

[Gingergrrl]

Hi, again! If you have an overview or index of these recovery stories...would it be possible to put them up on PR? Maybe it already exists..

@echobravo I'm so sorry it's taken me almost two wks to reply to you! Unfortunately I don't have an index of these recovery stories and it does not already exist on PR. I became interested in them and posted a thread about it (many months ago) and got a lot of feedback that others were interested as well. I spoke w/the moderators who were also interested but there were many logistical questions re: how we would structure this (as a new sub-forum or some other format?) and they also preferred to wait until the new PR software is installed which completely makes sense.

I also dropped the ball b/c I was busy with so many other things over the holidays but I am still very interested in the idea. I don't want it to be about "cures" vs. about things that have brought about a remission, or partial remission, or even significant symptom improvement. I thought it would be helpful to have things grouped together so when someone asks about a specific treatment, it will make the search process easier (but compiling it all together will be very time consuming and I have no computer/tech skills). So right now it is just an idea floating in the ether

You have been in a very demanding situation, I cannot imagine...I hope you now will continue to improve! And gradually build strength again from the many years of de-conditioning. I under-estimated to what extent my body had weakened.

Thank you so much and I am continuing to improve and build muscle strength. The difference in my muscles from pre-treatment (when they were weakened by autoantibodies) and now is amazing. Now I can do PT and pilates which would have been impossible before b/c I couldn't even stand and walk!

Maybe this will be your mission going forward. It will mean a lot to the many affected.

I do believe it will be my mission to serve the "hidden illness community" but I have to figure out exactly how I can best do this. I am not quite well enough to work yet but I want to believe more than anything that day is coming.

Was there some sorts of immune deficiency that caused inflammation, auto-immunity?

My two doctors believe that the EBV virus (that caused me to have severe Mono in 2012) shifted into severe autoimmunity. It started out like other cases of post viral syndrome (plus POTS) but then shifted into severe autoimmunity.

I also had these markers of low IgG, IgM etc, but the doctor's here never acted on it. I think these were symptoms of a systemic failure at a "higher level", involving the CNS, that affected basic body functions, leading to constant allostatic load hence damage and dysregulation to the body in so many ways.

I had to Google "allostatic load" but this all makes sense. In my case, I had very elevated IgM (vs. low) and all kinds of weird test results.

Yes, I have tried so many supplements, diet interventions from 2014 and onwards. But, there was a "bigger picture" that caused "system failure" at a more fundamental level, and no supps nor medication in the world would have fixed that.

I agree (although the core issue was different in my case).

Yoga can be so many things. 10 minutes of the Sun Salutation per day will go a long way. Hatha and Yin yoga are calmer variants, that reduces stress and has potential to invoke the "relaxation response".

Heard good things about Pilates Enjoy it!

I actually have no experience with yoga but I heard about a yoga class in my area (many years ago) that is specifically for people who have been ill or have had injuries. I want to find out if it still exists. I have had a good experience with (rehab) pilates at my PT Clinic.

 

[gbells]

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..

This sounds like you concussed your spinal cord or a nerve root. That would give the numbness. It isn't a good thing and indicates nerve trauma.

 

[taniaaust1]

. 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.

that was echobravo who posted that, not me.