Relief! I still have CFS but am a MILLION times better, takes a lot of work but worth it

[julienl]

what Ive done and do to be a million times better. I will edit and rewrite this to be more coherent but I just want to get it out there.

I havent socialised, but I have managed to do art, to make and keep appointments. Also I have had much less episodes. I am Super grateful, after 13 years of this, and much experimentation

as long as dont get colds or scratched by dogs and cats and stick to regimen I went from being in bed all day, with 3 or 4 episodes a month to one episode a month or one episode in one to two months. While I still can't exercise I can take little walks and can clean my room, get dressed, do my laundree, clean the house, make and keep appointments, I haven't socialised yet. In between I do art. I used to be an assistant Martial Arts instructor, so I'm thrilled that I practiced a weapons form at the lightests speed the other day and didn't seem to pay for it. I will continue reviewing the repetoire and building up strength in that way, going from the lightest to normal weapons.

I take kratom, b12 injections once a week, PYM magnesium, psylium, choline, acytelcholine, an anti snore machine, psych meds, counseling, flonase and similar and a regimen that switched to mostly keto, I drink diluted coffee,

I had head injury and believe have issue producing choline leading to lack of nicotine so I have organic cigs and organic vapepen, find helpful, though don't recommend

and other meds, interested in neurotrophics, describe

sometimes if especially IBS I do intermitent fasting not eating from 5pm until 7am the next day. I find the easier and more productive bowel movements the better my cfs, I'm finally about to try an IBS medicine after requesting it for years. research has shown something I think ibs helps a lot.

This post will have tmi but necessarie, specifically, the more and easier I poop the better my cfs. You can't be diagnosed as having CFS if you don't have some sort of IBS. It took a long while to find the right combination of supplements and foods and prescriptions, which I list below what works. The latest news when asked AI it has to do with Butyrate, and digestion, so not getting energies from food absorbtion. When I looked up it turns out I found the right foods I had already been eating.

My recoverie It started with Dr Myhill, read everything you can and follow as best you can her recommendations

To get the tmi out of the way, rest and digest is one of our states, if not digesting or constipated we feel compelled to rest, part of the cfs. This is why if feel something in tummy I will spend 40 min to an hour using flushable wipes and putting them in a diaper genie so as not to clog to the septic system and will do a whole dance routine reaching deep inside, pushing to the side, putting one leg on toilet seat, you will find your dance, I am lucky I have an attach on bidet that sprays water that helps clean and also shoots water in gets things moving, but after dancing around and a little comes out but keep going then you won't believe how much comes out and you will feel so much better, you will know when the blockage that has been bothering you has come out, and my whole psychologie changes afterwards as well. If I know I have to go out, I dont want to feel compelled to run to the bathroom every 10 minutes as I often do so I will take Pepto Bismol and Immodium, though that just band aids because really you want to get it out.

I am going to do a regimen to rid of Epstein Barr, when I tried previously I had a strong Hercs reaction episode, so this time I will clear my schedule. Also I had a head injury which affected my hormones. Also I have psychiatric issues which contribute and IBS, and then not digesting right will affect mitochondria as well. I had a trauma in High school I never got over and carried with me for all these years and finally am finding resolution to it, that certainly affected my system.

It's interesting, when I went to a clinic to evaluate my head injury, after a scan, an area that the Dr said is much better than expected she asked if I meditate, I said yes, all the time as going to sleep and can share wht I focus on upon request. She said also unconditional Love and yes I have a cat. She also says Horses, as in Equinne therapies.


1) First ask your Doctor for a prescription for Xifaxan. It will clear out all your stomach bacteria good and bad, so you'll have to supplement afterwards, though it made a huge difference. I went from being gluten intollerant to eing abl to have the occasional pasta and dairie

2) Itraconozole. Candida could be an issue. Or previous mold exposure. I had itchie rash on chest since 13, athletes foot for 20 years and jock itch on and off for 30, After a year of taking it it all subsided, one less thing taxing the system. I also took some specialy formulated to but in a nebuliser called nasoneb which I inhaled to flush out my sinuses because of mold exposure, but that might not be necessary for you.

3) changing what eat, lsting, breakfast organic wheat free organic avocado toast with chopped egg. Lunch salad with grilled salmon guacamole a bit of black beans small amount cojita cheese corn onions all on lots of lettuce. Dinner and this is key, Pickled ginger and Miso soup, that will help with the Butyrate, any fermented foods, and resistant starches.

4) sleep mchn, I had apnea, I tried a machine many times couldn't get used to it, finally they came out with nose pillows attachment to machine and that helps. I take Flonase and a spray before sleep and that helps. Also sleeping pills either ambien or topomirate

5) vitb12 injection, recommended by Myhill, huge difference

7) kratom, controversial, everyone including drs want me to get off of it, it's difficult to get off of it, they've referred me to chemical dependencie clinic however I don't know what to replace it with, I take the Green Malay kind, the kind that wakes you up, most other kinds are for pain relief and make you sleepy so be careful take the right kind, I discussed this in a post previously, it's controversial, but has made a huge difference for me in terms of being able to get out of bed and do things

8) Psych meds and talk therapie, a studie that it can do as much for IBS as presciption meds!

9) The unconditional Love of a cat is incomparable and I owe a large degree of my recoverie to her

9) I've read and researched a lot and tried many supplements, I take Pym Magnesium, Psyllium, and have to poo a lot, so I also sometimes take pepto bismol and sometimes immodium to calm things down a bit, though its better to get it out,

10) I was in an abusive relationship when cfs started, go figure, that to say no budget for clinics meds etc, and criticised for purchasing supplements
fast forward and got out of that and have the support of fam for the supplenments I will describe in detail when I edit the post

11) Also, have to avoid triggers because triggers became somewhat shutin

For instance, I started writting this heard cold going around house and had episode for a week all I could do was sleep, though not achey this time.

12) Heard of Edison effect class where eliminated entirely, I signed up for and will try also local clinic where says has gotten rid of Epstein Barr before and when have episodes have granula anuloma, and that would be great either way to completely free of cfs

Best unconditional Love from a cat, just had to train not to scratch when startled jump off

also read and follow best can all the Myhill books you can

I take NAC
Glyceine
Glutathioe
BPC157

I keep my home clean, a clean home is a happy home

I will add more and edit better but just wanted to share

 

[julienl]

Instead of editing the above, I'm adding to it with the following
When I was younger I was happy go lucky but once I had my head injury then ocd then chronic fatigue syndrome, traumas and IBS, I retreated and my world became smaller and smaller, and without being able to do exercise I have retreated. A car has to be driven fast once in wile to blow out the impurities and have it run smooth, the big goal is to get to feel comfortable walking a bit.

With neuroplasticisticity, Habits change the architecture of the brain and then the mind via neuropeptides channels, whether thoughts feeling actions get ingrained and are easier to do and the first impulse, that is why implementing these things will seem at first foreign then easie. We dont know how good we feel until we think differently its like a browser with too many tabs open to the same subject the ram and cache has to be cleared to let new information in, approach this with an open mind. Practice cultivating a deep calm, like a lake that miror reflects the moon is beautiful, throw too many rocks and disruptions in there and you dont get a clear picture.

It must be considered a full time job, on our own, and if can rallie a team of Drs, clinics listings and recommendations, starting with Dr Myhill

The goal is to have fun to Love and work, and we want to travel and show the world who we really are, As we've been forced to become introverts, there are 7 books for introverts that might help us shine come through as well, also learning art is helpful

There's tummy troubles and picky eating and easy nausia, Plus theres anxiety, that alone can cause stomach issues and back. Lets imagine a full cleanse top to bottom. We need to integrate, synchronise, harmonise mind, body, spirit, emotions, the best way I know to do that is with Martial Arts hard or soft like Chigung, but more on that later. It's a tall order which is why for the body part first it must be treated like a fulltime job, and with the timing of supplements, correct rest, exerise, correct foods etc it can feel like it. Once the body is settled then we get the juices flowing in the am to then go out or at least participate in home activities.

Pepto bismol is nice and it's ok to use regularly, but it's a band aid, as is immodium, alka seltzer which she might like, and ondansetron

The focus is on the biome, it has almost as many nerve connections as our brain and neurons are found in the stomach area, it's called the 2nd brain but is older and it's important it's settled, look at Taichi notes. An article just came out how common chemicals disrupt the biome, every year thousands new introduced and not checked for interactions, not anti vaxer but had 7 today 30, and when small less chemicals foods perrhaps as well, theres a staff of 3 that check all the bottled water in the US, so who knows, however, these techniques will counteract. When your tummy doesn't feel good, you dont fell good and dont want to partcipipate similarly if your mind is made up but your tummy disaagrees, its the tummy that wins out, thats your subconscious emotions and power center, its why we have to settle that with foods supplements meditation light exercise positive sleep correct attitudes and work in arts and fun, also learn to speak to that area, massage it and with simple instructions it will respond, think of it as a younger more powerful brother that likes to be parised, given simple instructions in the positive, it doesnt hear negative words, so you can say nice dreams as instructions but if you say dont have bad dreams it doesnt hear dont and hears follows bad dreams, so it must be praised for what it does, massaged and congratulated when it fulfills the missions you set for it one at a time, and you must reel its power in or it will overtake your whole world in unrully fashion, more on this later,

I'm going to share what works for me as Ive tried many different things. I recommend start by clearing the good and bad bacteria in biome by taking recommend Xifaxan 550 Mg Tab prescription from Dr it was very helpful, I take it once a year and as I've learned what works for me even

Flonase with Itrapropium Bromide
Nutrachamps Bcomplex
recommend Xifaxan 550 Mg Tab Baus
sleep

for social
Buspirone 30 Mg Tab Unic, Also known as: BUSPAR

for sleeps
CLONAZEPAM 0.5 MG TAB ACCO, Also known as: KlonoPIN
personal findq
DULOXETINE DR 20 MG CAP AJAN Also known as: CYMBALTA

TOPIRAMATE 25 MG TAB CIPL Also known as: TOPAMAX
VitD with K supplements or 10 min sun as much coverage as can

Miso is the best and I found that probiotics must be introduced every day such as kefir, sourkrout, kimchee, I ordered a probiotic called seed, though it's tricky taking probiotics in pills as it can be uncomfortable as the good replace the bad, so its best when get it from foods feels settled then tries supplements. Yogurt, Kefir, and small bottles called called Yakult if you're not lactose intollerant, when I order Miso, Ive taken to the the Raddish and pickled ginger that comes with meals as I think its part of positive effect, especially ginger teas etc, When you find delivery of Miso you like it's best to splurge and have it delivered every night as I don't trust the packages

Ask to see dietititian and also ask for a referral tohave allergies tested, who knows there may be a food you're allergic to, there's keto and who knows you may already be Keto however if choose to have only Keto then do just organics, as there's too much antibiotics chemicals etc otherwise, in fact there may have allergies to glyphosphate used in nonorganic grain feeds and could react against adrenalyn which is in non organic foods etc

Other supplements such as omegas, theres a vegan omegas or get it from fattyfish like salmon or omegas and find which combos work best, think of it like a job for a week, right sleep, exposure, therapies, pills, foods and find a routine best for you, always ibsrela too an FDA approved IBS medicine, also I've taken to eating the radishes and ginger that comes with meals so that may help, especially ginger teas etc

There's something called the 'Europe effect' where all sorts of IBS go away when traveling, there's a netflix documentary called hacking your health and in it a lady can't loose weight because she has the wrong probiotics. The foods are different there, I know I had moments I didn't have CFS while there. The farming practices etc, you can have all the pasta you want and stay thin, it's amazing. Of course there's Zarsa but that may be too intense, I will discuss that upon request

EXERCISE
First if we don't exercise our hormones dont circulate. Light exercise, perhaps can play games while jumping on trampoline, also practice stretching and Chigung together for light exercise and begin sessions with a bit of meditation. You can massage tummy and also speak to it either after exercise or at night. Ideally when not in an episode going on an easy excursion, taking photos at a lake,etc. It's important to equate going out with fun such as yogurt shop, record stores, nature baths the sights smells sounds do wonders, then work in parks, cute towns etc.

I know a lot of Chigung there's a lot online and in books and I can post films of what I've learned upon request

They are close to developing on exercise in a pill, but its best not to wait for the benefits from that

If don't want outside exposuresunlight can go to firs place also supplement with vitamins, Most of us lack exposure and VitD we require 15,000 units and or 10 min sun, can also order full spectrum bulbs which will help a bit but best is to expose as much to sunlight as comfortable, perhaps set up covers around deck,


our glands require movement to circulate hormones, so light bouncing on a trampoline may be a great idea

BCAN 40/48" Foldable Mini Trampoline Max Load 330lbs/440lbs, Fitness Rebounder with Adjustable Foam Handle, Exercise Trampoline,

b12 injections has been hugely benefitial for me, I do it once a week and do an online visit to see if you're ellegible for prescription

Ketamine helpful will do again, did 7 times

AcetylCholine BrainFoods, dosage 3 pills, I just take one, works wonders for me for energy and focus, could be my head injury


If I know I have to go out or drive long distance, dosage 3 capsules, one is plenty Neuro Fuel Brain foods same brand I like all their supplements, also their Gaba


SUPPLEMENTS Over the counter
Ive tried hundreds and when you find those that help you actually crave them. It's important to take with food or you will queezie and not want to take, fortunately most on this list dont require taking foods. It used to be people were smarter with higher IQs, stronger, built their own houses, had more compassion all verified by tests and studies, we know that foods used to have 83 vitamins and minerals, but modern pharming the foods have only 7, partly why people feel hungry all the time and become obese, thats why its important to use supplements.

There are seven types of magnesium, find whats right for you. The modern foods don't have enough Magnesium, and when I take it I don't have strong IBS. I am happy with Pym. Try that first and with food at first as the kind that's not right can make you nauseus, Pym doesn't. Then there's fiber and ruffage, either find a salad you're happy with, perhaps seaweed salad and take psysilium. Depending on my BM in the am I know what type of day I will have whether heavy CFS episode or if constipated don't want to socialise or go out

Pym Magnesium I don't want to block the post by adding direct links

Himalaya Organic Psyllium Whole Husk, Natural Daily Fiber Supplement, Regularity, Appetite Management, USDA Certified Organic, Non-GMO, 56-Tablespoon Supply, Unflavored

I take three kinds of actylcholine over counter and prescription hydrocortisone helps me also with energy levels, she may want to try if she feels low energy some are prescription some over the counter, I've included names of brands I enjoy, I take three kinds, This may be helpful or might just be specific to my injury not producing acetylcholine which translates to lack of nicotene, every region has nicotene receptors, which is why I use cigarettes, otherwise I wouldnt consider it, it's included in the recommended pack of brain power supplements

nutrachamps complexb's USDA Organic Vitamin B Complex Vitamins Complex Supplement with B1, B2, B3, B6, B7, B9 & Methyl B12

 

[julienl]

I splurge and get miso and avocado roll with the ginger via doordash.com from my favorite Japanese restaurant and I've noticed the difference when I order from a different restaurant I don't have the easy BM in the am

 

[julienl]

Sometimes a full flush such as for a colonoscopy can improve IBS. It was difficult just liquid two days but I did that. Months later I was prescribed Trulance for IBS, I only took it once because TMI I had a crazy blowout of solid diarrhea, however after that, combined with miso and ginger and my IBS has been getting better