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Hi all, just wanting to share my success story and how I got complete remission through an intense autoimmune protocol, low-dose abilify, and getting a cold.
Full disclosure the doctor who's autoimmune protocol I followed does absolutely make money from books and very expensive consults, but I gained all information through free online resources + facebook groups. I'll try keep this brief. Happy to answer any questions. Hope this is the right place to post...
I developed ME/CFS when I was 12 after a series of repeat viral infections. This took me from doing 16 hours of competitive gymnastics a week + school to being completely bedridden. I was unable to stand, walk, shower, or go to school. Over 3 years, I slowly improved to a plateu of "mild" function. I was at around 50% of normal function, with a 6 hour energy envelope per day. In November 2021, I decided to try some specific treatments and by March 2022 I reached full remission. I am 100% sure this was not spontaneous remission falsely accredited to something new. I've since had covid and had no relapse.
My symptoms: Post-exertional malaise (I would experience a crash after every single day at school) complete exercise intolerance, cravings for salt, sensitivity to smells, sore throat, nasal congestion, muscle pain, joint pain, nerve pain, headaches, immense brain fog, inability to speak, breathing difficulties, heart palpitations, dysautonomia, paralysis in severe crashes, bad reactions to vaccines, inability to get colds/flus.
What didn't help: GET (shocker!), a naturopath, supplements (vitamin d, iron, b-12, b1, co-q10, omega 3), general diet improvements (less junk, more veg, adding chia pudding + green smoothies to normal diet), pacing (helped me crash less by staying within energy envelope, but did not increase energy envelope at all)
What did help:
-Strictly following the Golder autoimmune protocol for 3 months, from November stopping start of February. It consists solely of 3L of water, 650g of raw cruciferous veg/leafy greens, 1/2 cup of chia or flax seed a day + iodine and b-12 supplement. All raw, absolutely no foods other than raw fruit/veg/chia. This is supposed to be done for 6-8 weeks, but I went longer as symptoms were still improving.
Pros: It was the first thing to work in 7 years for me and I saw results within 2 weeks. It took me from around 50% function to 75% function. By the start of January my PEM was gone, I could stay out for 8-9 hours with no crash.
Cons: This protocol is incredibly extreme and unfortunately resulted in unhealthy weight loss from bmi 18 to 15 for me. Very hard to stick to and not at all pleasant. I dont think those beyond moderate level would have the energy to digest or prepare this amount of food. Need to ease into and out of diet.
-Low-dose Abilify from late Jan onwards(I was at 0.75mg daily for ~2 months)
Pros: This helped get me from 75% to around 90%. I could do 11-12 hour days with a little struggle, absolutely needing a 1.5 hour lie down in the afternoon to continue. Very easy to take.
Cons: I experienced a lot of very negative mood swings and menstrual irregularities, especially at a 1.0mg dose which I had to stop.
-Getting my first cold in 7 years. In late March my body was now functioning normally enough to allow me to get sick. I developed a rather nasty cold. From the 1st day of symptom onset I noticed complete dissipation of my cfs symptoms, despite feeling very flu-ish. Exercise no longer made me feel drugged. I could continue going all day with no need for rest.
I am now 20 and have been in full remission for over 6 months. I did have to get over a lot of deconditioning post-cfs, and deal with problems I believe to be linked to impacts of cfs (skin disorders, hormone imbalances, possible endometriosis, etc.) In order to keep my health up I eat a low-inflammation, whole food plant based diet with no meat, oil, or processed food other than the occasional treat meal. I live a normal life with no restraints placed by my body. I can exercise again. It is both incredibly surreal and incredibly normal.
Best wishes to everyone in battling this disease.
Full disclosure the doctor who's autoimmune protocol I followed does absolutely make money from books and very expensive consults, but I gained all information through free online resources + facebook groups. I'll try keep this brief. Happy to answer any questions. Hope this is the right place to post...
I developed ME/CFS when I was 12 after a series of repeat viral infections. This took me from doing 16 hours of competitive gymnastics a week + school to being completely bedridden. I was unable to stand, walk, shower, or go to school. Over 3 years, I slowly improved to a plateu of "mild" function. I was at around 50% of normal function, with a 6 hour energy envelope per day. In November 2021, I decided to try some specific treatments and by March 2022 I reached full remission. I am 100% sure this was not spontaneous remission falsely accredited to something new. I've since had covid and had no relapse.
My symptoms: Post-exertional malaise (I would experience a crash after every single day at school) complete exercise intolerance, cravings for salt, sensitivity to smells, sore throat, nasal congestion, muscle pain, joint pain, nerve pain, headaches, immense brain fog, inability to speak, breathing difficulties, heart palpitations, dysautonomia, paralysis in severe crashes, bad reactions to vaccines, inability to get colds/flus.
What didn't help: GET (shocker!), a naturopath, supplements (vitamin d, iron, b-12, b1, co-q10, omega 3), general diet improvements (less junk, more veg, adding chia pudding + green smoothies to normal diet), pacing (helped me crash less by staying within energy envelope, but did not increase energy envelope at all)
What did help:
-Strictly following the Golder autoimmune protocol for 3 months, from November stopping start of February. It consists solely of 3L of water, 650g of raw cruciferous veg/leafy greens, 1/2 cup of chia or flax seed a day + iodine and b-12 supplement. All raw, absolutely no foods other than raw fruit/veg/chia. This is supposed to be done for 6-8 weeks, but I went longer as symptoms were still improving.
Pros: It was the first thing to work in 7 years for me and I saw results within 2 weeks. It took me from around 50% function to 75% function. By the start of January my PEM was gone, I could stay out for 8-9 hours with no crash.
Cons: This protocol is incredibly extreme and unfortunately resulted in unhealthy weight loss from bmi 18 to 15 for me. Very hard to stick to and not at all pleasant. I dont think those beyond moderate level would have the energy to digest or prepare this amount of food. Need to ease into and out of diet.
-Low-dose Abilify from late Jan onwards(I was at 0.75mg daily for ~2 months)
Pros: This helped get me from 75% to around 90%. I could do 11-12 hour days with a little struggle, absolutely needing a 1.5 hour lie down in the afternoon to continue. Very easy to take.
Cons: I experienced a lot of very negative mood swings and menstrual irregularities, especially at a 1.0mg dose which I had to stop.
-Getting my first cold in 7 years. In late March my body was now functioning normally enough to allow me to get sick. I developed a rather nasty cold. From the 1st day of symptom onset I noticed complete dissipation of my cfs symptoms, despite feeling very flu-ish. Exercise no longer made me feel drugged. I could continue going all day with no need for rest.
I am now 20 and have been in full remission for over 6 months. I did have to get over a lot of deconditioning post-cfs, and deal with problems I believe to be linked to impacts of cfs (skin disorders, hormone imbalances, possible endometriosis, etc.) In order to keep my health up I eat a low-inflammation, whole food plant based diet with no meat, oil, or processed food other than the occasional treat meal. I live a normal life with no restraints placed by my body. I can exercise again. It is both incredibly surreal and incredibly normal.
Best wishes to everyone in battling this disease.
maybe because you are a new user?