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I'm in recovery. Here's how I got there.

TL;DR: TL;DR:
I identified all kinds of things that my body struggles with. The sum of these things made my body collapse in 2008 or left it unable to deal with the bug that causes ME.

I applied personally tailored solutions to any and all of these issues. I will continue to do so even now that I am in recovery. I've gotten to know my body.

The issues I deal with are Digestion, DNA damages, Hormones, Blood Sugar, Sleep and Stress/ANS. I studied them all scientifically and ran little trials to find out what works for me, once I understood the underlying biological system of each issue.
Calming down the nervous system was the final piece of the puzzle.

Long story:
+/+ MTR A2756G, MTRR A669, MAO A R297R and VDR Tag
Also very Progesterone deficient and adrenal insufficiency. I take HRT.
I knew none of this when I didn't recover from a little flu back in 2008.

I was bed bound and debilitatingly brain fogged during 2008 and 2009. I dragged my ass to the doctor and after he had ruled out all the usual culprits (Lyme, vit D, B12, Pfeiffer) he said: "Usual people only have one thing wrong but with you everything's wrong, I don't know where to start!"
My reaction was: "Then it probably doesn't matter where I start. I'll start with digestion then since my poo is grey and floats."
I was educated as an engineer and had no qualms in approaching this disease as a black box, all by myself. Engineer's mantra: entertain theories but only act upon repeatable results.

Luckily I've had a weird bout of insomnia every night all my life which had me so alert that I could read scientific journals and research my condition for one hour. I didn't know my own name during the day but that one hour each night I was clear minded. Later I've learned this is probably due to homozygous MAO A mutation. Too high levels of noradrenaline/norepinephrine when going from Deep Sleep to REM sleep.

I got myself an outdated biology book and learned about the digestion system, about stomach acid, about how bile works and the uptake of nutrients in the duodenum. As a trial I decided to acidify my stomach acid and suddenly my poo turned dark and I got rid of my malnutrition. First educated guess succesful. The doctor cheered.

Over the following years I continued this approach of studies, educated guesses and trials and I worked my way through Digestion; Hormones; Adrenals; Nervous System and Sleep. I addressed about one topic each year. Didn't know squat when I launched into a new topic but got results in all of them. I slowly recovered to a housebound level in 2013.

My theory about ME:
  1. everybody has their own personal bodily signature that facilitates the onset of their version of ME
  2. in every PWME the Autonomic Nervous System is perpetually scrambled.
My solutions:
  1. identify personal factors and address all of them, individually. (In my case: Progesteron deficiency + insuline hyper sensitive + always in Fight or Flight + never slept through the night + MAO A kaput + hyperalert personality + hear and smell everything + a virus/bacterie in Spring 2008 + shot adrenals + vit D receptors and B12 cycle faulty)
  2. take away all (personal) stressors that bug the ANS + teach it to react different to impulses.
That last one is not so easy but the ANS and the brain are plastic and fluid, you can teach it new ways, right up to old age.
For me, I used Gupta Amygdala retraining; EMDR and was looking into dr. Goldstein methodes of influencing brain paths chemically. You could also try meditation or mindfullness. I also did some CBT and even hypnosis to try and learn new thought habits in order to influence neuro transmitters.

The goal is to influence the physiology of things, not the psychology of things. Psychology has nothing to do with the cause of the illness(!!). ME is not a mind-thing, it's a body-thing. But CBT and all matter of approaches may provide tools to influence the bodily part of the brain. But you won't find a therapist who will help you like this... don't bother looking.

In the end I did Reverse Therapy as this is tailored to calming down the Fight or Flight Response. This did the trick.

Over the years I read a lot about the bodily stress responses, especially work by dr. Selye who coined the term "stress" (when he actually meant "strain").
The body has some powerful systems to deploy when survival is at stake, the Stress Response is one of those systems. The Insuline Response is another.
These two are The Big Guns and triggering them should be avoided because they alter the normal modus of the body and have a lot of collateral damage. We are way too casual when it comes to exposing the body to sugar and stress. They both make the body go into survival mode which is Serious Business. The body can't get more serious than that. It's only akin to fighting off a tiger or giving birth, I assume. And perhaps crack cocaine or crystal meth. The most intense orgasm doesn't come anywhere near to what you physically activate in the body with a little bit of sugar or stress.

The Hormonal System and Hormones As Neural Transmitters are two other systems that interest me.

These four systems are immensely powerful and very worthy of identifying the personal signature of.
I discovered I had issues with all four of them, which were easily shown in blood and medical tests.

I addressed all the non-ME things that burden my body such as hormone shortages, a diet that provides level blood sugars and methylation-problems. These are not the cause of ME but I cannot heal if I don't fix these. For these things I had tests done and am under doctor's supervision.

When I was ill I avoided all the things that my body perceives as stressors. They can be as ridiculous as garlic, music, in-laws or warm showers. I'm not arguing with my body, if it's bugged by it I avoid it. I use my high-sensitivity to check whether something is ok or not. This gets me results.
Now that I'm in recovery bodily stressors are far less of an issue. I still use my sensitivity to check and I wear my ear mufflers daily. Also no contact with in-laws or otherwise draining people.

With these solutions I recovered to a housebound level. I was now left with the last piece of the puzzle: the ME-thing. Is it an intracellular parasite gnawing at my nerves or mitochondria? Is it some sort of unhealthy ANS-modus that my body has gone into and needs to snap out of? Is it a permanent eroding of the intracell signalling devices?
I don't know. But it was the piece that prevented me from recovering to more than 50% health.

My instinct said there's an invader continually bugging my body. But my body ought to be able co-exist with it, if there are no additional stressors in my life. I view the body as a bipedal coral reef, there's all kinds of things going on in here and wanting to be sterile is probably not feasible. It's a balance thing, an eco-system. Not a machine with a clean interior.
But this is just a hunch, I have no scientific evidence for this.

In May 2014 I recovered practically overnight when I started Gupta Amydala Retraining! My health soared and kept steady at 80%. So it is ME an ANS thing after all?

Then in Spring 2015 my precious 80% health took a nosedive when two normal life stress events happened (cat nearly died and a court case). 6 months later both issues are resolved but I was severely housebound again and couldn't refound my cool. Liverpain, fatigue and continual stress levels. But I didn't fall back to bed bound nor the 10-15% health level where I was at in 2008/2009. I held steady at 45%.

I hoped to regain some health now that the life events were dealt with but in reality I was convinced I had blown my one chance at recovery and that I would be ill forever. I began to accept that this would be my life from now on.

Then, in Fall 2015, I read about a forum member who recovered with the help of Reverse Therapy (RT). Sueami is her name. Her story struck a cord with me. This therapy is not therapy as much as a counselling to learn to calm the Nervous System. To influence body chemistry, brain chemistry.

This RT worked for me. In barely three Skype sessions, at 80 British pounds a piece. It addressed that final piece of the puzzle: calming down the nervous system. It also teaches how to be a well person because they think differently from a PWME. I am now in recovery (again). Running around each day, doing fun things. Also taking rests and loiter about since my particular issue is that I need to learn to waste time, relax, do nothing, be in the moment, be in my body and waste more time.
I still take my minerals, vit D, HRT and go easy on the blood sugar. And I wear my ear mufflers a lot.

I do not think that Reverse Therapy has identified the cause of an overwhelmed bodily stress system nor the cause of ME. I think they've identified tools to successfully tinker with the bodily stress system.

I still entertain the idea that ME is caused by a bug. I was exposed to the Q-fever back in 2008. And Lyme is hard to proof years later. Whatever the bug, nowadays my body can co-exist with that bug.

TL;DR: identified all kinds of things that my body struggled with. The sum of those made my body collapse or left it unable to deal with an invader. I applied personally tailored solutions to all of them. I will continue to do so even now that I am in recovery.

Comments

You are indeed a brave person to overcome all of those obstacle's ! I wish you success in your journey to a full recovery !!
 
I'll definitely look into Reverse Therapy -- thanks. But my question is, "How can one avoid all things the body perceives as stressful?". Particularly when one is "blind-sided" by an unexpected change in something that is routine, and unavoidable. Here's an example. A couple of days ago, my husband opened our credit card bill. We always pay in full, on time. So, imagine our shock at seeing a $36 interest charge (I had mistakenly paid $2 less than the balance, and the computer automatically calculated interest on the full amount. How they can get away with this, I have no idea.) Anyways, my husband rolled with it. As for me, I was wearing a heart rate monitor. It immediately started alarming, and rapidly increased to 148 bpm from below 100. My heart rate stayed elevated for quite some time, even after the issue was resolved by making a phone call. But, the effect (although not as severe) lasted throughout the entire following day, during which there wasn't a single thing I could do upright (POTS) without my monitor alarming. I definitely need my nervous system calmed down. Funny thing is, I don't feel stressed, most of the time. In fact, quite the opposite. I, too, believe that ME in many people (including me) was caused by a bug.
 
Congratulations! I also was inspired by her thread, and had printed the booklet. I have not yet read it as I forgot. You now have inspired me again! I will read it this weekend!

Keep us all posted on your recovery!
 
OldBones, when I was very ill I did not open post. My husband had to run our lives for a while.
A good lesson for me to let things go and delegate and watch him do things the wrong way. But I had no choice and lives don't self implode just because they're not run efficiently.
It cost us money and the house was a mess and I didn't have clean clothes. But no stress.

I also moved out of the house to a little holiday cabin in the country. To get away from the noise and impulses of the city. My husband came every weekend. During the week I lived there with my cat, laying on the couch. Made one big pot of chicken soup that lasts me the week (lunch and dinner).

I did nothing else but breathing and trying to Rest and Digest. There was nothing else I could do, really. I laid on the couch and knitted a lot. Went online to talk to people. This forum and the knitters forum Ravelry and that was it, really. Emailed with some friends sometimes.
 
Strawberry I tried DIY Reverse Therapy based on that booklet but I didn't get results. I really needed someone else to guide me through the mindfulness meditations that are part of RT. And help identify my personal body messages. I mean I kind of knew what they were but a fresh pair of eyes were very valuable.

If you can save up 80 British Pounds and have the first skype session with Lyn White it will help tremendously. I waited five months before I did so and I very much regret that, I could have getted started so much sooner. I was ready for it.

Ps I don't agree with everything the booklet says, the theory. It's the method, the tools, that I endorse.
 
I kind of love the way we each have to discover our own story. We're each looking for that uplifting ending. I'm so glad you found your way to yours. I'm still editing, rewriting and trying to keep the faith that I can put it all together!
 
Peter: HCL pills, diluted apple vinegar, diluted lemon juice. Taken just after food. I still take these. My HCL pills contain 324 mg of Beatine HCL
 
the whole reverse therapy (rt) thing is overated, i travelled a long way to try it & the dr i saw was a nut , the guy who founded it is a bit of an oddball too. Sorry i`m critical of techniques that helped you......but i`ve done what you have and many more things besides, and they didnt help me much ,ashok gupta`s work is pretty much the lightning process, it doesnt help me much and takes a ridiculous amount of energy to do regularly ,if i could do those technques all day, well i wouldnt be ill........ reverse therapy is forgoten about in ME circles mostly(its been around 10 yrs), as it doesnt help that many people and the fact that you paid £80 an hour is disturbing, you are in the minority of those it helped it was big news 10 yrs ago....i knew people who paid a lot for it,& mickel therapy too ,another which died out, and it didnt help them..i gues i`m bitter after 25 yrs of ME. fish oils help me, ie krill oil, and some similar things, at the moment my sleep is a mess due to noise wars with my neighbours which has taken many months to solve and has left me fragile to noise of any kind, i just want a detached house in the middle of nowhere now :( i suppose out of all the weird stuf i tried, eft and fish oils helped me most. oh ye it takes like 5 days to be trained in reverse therapy.........and they charge you 80 ph.......disgusting rip off......disgusting people too i`m afraid....... sorry if i sound bitter but its late i should be in bed.....but cant sleep till 3,4 am due to previous neighbour problems.......
 
@joshkz I'm sorry you suffer for so long.
RT is ofcourse not the one cure for ME. I had to fix gut, hormones, immune system, digestion, adrenals and heavy metals first/also.

As a means to get out of Fight or Flight I find it an excellent technique and then I don't care who invented it and what kind of person they are.

Perhaps you are already well in tune with your body and will not benefit from any cerebral approach such as Gupta, RT, NLP or CBT?
Perhaps a bodily approach to calm down the central nervous system suits you better: swaddling, cuddling, CTM, acupuncture, reflexive massage, osteopathy. EFT is such an approach too. I'm also thinking of techniques used by the autistic community, since they have fast experience with calming down a person when the cerebral route is not available.

I owe a lot to people who are autistic or who love their autistic people. Much wisdom about how to shut out impulses from the world and how to recuperate when overwhelmed. And how to live your own life, on your own terms, instead of what people deem normal or desirable.

I hope you can make a nest to sleep in in another part of your living quarters, where the noise is less. Who cares if people think it's odd you sleep in the kitchen.
all the best.
 
@joshkz EMDR. EMDR is another technique to influence the Fight or Flight system that works best when the head/thinking shuts up, tyvm.

I've found it very powerful. But -to me- it only worked on certain issues/events, not on finding a new daily habit towards all and any circumstances/stress.

I highly recommend EMDR. Even more than RT.
 
thanks for your reply Woolpippi, i was in a negative place before ! EMDR i never did try that, did you try IEMT? i spent 3 hrs with the guy who made that technique he didnt think it would help me though shrug, do you think youtube vids are enough to learn EMDR ? i did forget one thing, the wholenes process, thats the most relaxing thing i found, but when i did it a lot there were side effects, not usual side effects it would be hard to explain..but i didnt think i could live with it..i cant find a good explanation of the wholenes proces, just had a look around on the web lot of overly complex explanations...its to do with metaphors really imo....but the way you resolve the problem/tension is unusual. ......theres another part of you thats holding the tension in place, ..and thats the part you have to resolve....was that vague ?! . it only cost me £75 to learn they jacked the price up now..... you could try this http://www.huffingtonpost.com/john-stanley/being-mindful-becoming-wh_b_5346307.html

I`m curious about what you said about autism, where can i find out about the useful info you mentioned....
 

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