Full remission after 7 years of ME/CFS - What worked for me

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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.
 

lenora

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Hello @nolongerdiseased......I'm impressed with your fortitude (and that of anyone who may have helped you).

I found that the younger you are, the better chances for recovery...this is somehow an important clue. What are you doing with your restored life? I'm sure its difficult at first. Continued good health. Yours, Lenora.
 
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Thank you for the kind replies! I definitely agree @lenora , my age certainly would've helped in allowing a full recovery. The initial deconditioning post-illness was very tough, and I can only imagine how that would've been amplified had I been older and had the illness for longer. I feel very grateful to have found something that worked for me, especially as I'd been ill longer than the supposed 5 year threshold for recovery and my illness certainly did not show any signs of improving on its own.

I am currently in my second year of university, studying fine arts with a minor in Japanese. I can spend hours painting, I go out with friends, I'm back to exercising regularly, I have a relationship, and I'm learning how to drive. I am incredibly grateful to be able to live a full life!! If I have one positive take away from being so ill for so long, it is the gratitude I have for any good moment I experience. I hope there many bright moments for you all in future, whether in illness or revovery.
 

hmnr asg

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Congratulations!
To be honest I'm very skeptical of remission stories but this is the first time I believe the story and that the patient actually had cfs.
Well written story with sufficient context and details.

Can you tell us how long you have been on abilify now ? Are you concerned that abilify might poop out ? Many people (including myself) who have gotten benefits from abilify ended up going back to baseline after a few months.

Also I'm seriously considering trying your diet, even though it sounds awful 😞

Edit: can you share more information about this diet? I went to her website and it looks pretty sketch lol. If there is a pdf or a link you can share it would be great ! I'm just confused because you said cruciferous veggies but then you mentioned fruits also.
 
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@hmnr asg Can't blame you haha. I feel like I've seen so many recovery stories where its pretty clear the poster was suffering from idiopathic chronic fatigue or some other condition and not ME/CFS.

Apologies for not being more specific on my current abilify usage, it was difficult to boil 7 years of illness + 5 months of recovery into a single post. I am actually completely off abilify and have been since around April? No symptoms returned after stopping my dose. The possible pooping-out of abilify was something I was worried about, and planned to combat with LDN or maybe a second whirl at the diet. I am very lucky a random cold pushed me over the finish line for full remission.

I totally agree, a lot of her marketing/how she presents herself seems straight up gimmicky and is a bit hard to navigate. Took me a while of researching and snooping about facebook groups to be convinced it was something with some legitimacy. I'm not 100% sure on PR's rules around posting promotions/links with things like these, but I would be more than happy to provide the resources I used and more specifics of what I did via DM or something!
 

Judee

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Good story. So, for us in UK then, is it easy/straight forward for any of us to simply go to our GP and to request may we try Abilify. Would they happily let us give it a go.?
You might want to post your question in this thread specifically on Abilify as there a many members in discussion there and you might get a response sooner: https://forums.phoenixrising.me/threads/abilify-tolerance.82726/

Sorry I don't think I read that thoroughly enough. I'm tired
Perfectly understandable. :)
I just posted something similar on another thread because I'm kinda blurry eyed right now.

Edit: And that other Abilify thread is looooooooooong so I don't think anyone will mind if you can't read through that either.
 
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Thanks for sharing your story. You are not the first one I hear about achieving remission in a similar fashion.
I do have a question though. You mentioned you have dysautonomia. I am assuming you have blood pooling and orthostatic intolerance.
How did you deal with the dehydration of being in extreme ketosis while "starving your body"? This is always the roadblock for me. And no matter how much water or electrolytes I drink, nothing really makes up for the lack of glucose. Fasting does not seem to agree very well with blood pooling and low blood volume.
 
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How did you deal with the dehydration of being in extreme ketosis while "starving your body"
I have just realised 650g of raw leafy greens and 1/2 cup of chia contains very few carbs so if one starts dieting like this they will enter ketosis. I wonder if that made the trick.
You are not the first one I hear about achieving remission in a similar fashion.
Do you mean scarce diet + Abilify? keto + Abilify? Or just Abilify alone?
 
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Do you mean scarce diet + Abilify? keto + Abilify? Or just Abilify alone?
I meant the scarce diet alone, but that involves ketosis as well. Look up "Mary Ruddick" online. People on heer antiviral diet stay on a high-fat, but low calorie, broth diet for a month. I know long-term (2+ year) Covid long-haulers that attribute their recovery to the diet, when nothing else worked. It is not a diet for the faint of heart, for sure. But it is not permanent.

Now I even wonder if it matters if this scarce diet is meat-based or plant-based. One issue I see with these plant-based alternatives is that plants are not as nutrient-rich as they are painted to be. We are not ruminants, and cannot extract them that easy, compared to meat. Then you have to resort to supplements, and I already see B12 being mentioned. I do worry about other factors too.
 
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@hmnr asg Apologies for that! I've made an email you can reach me on instead, nolongerdiseased@gmail.com.

@ruben I'm lucky to have a GP who treated me from childhood and so believed the validity of my disease and had an extensive background with me. I basically brought a printout of the Stanford study and we agreed on a possible dosage plan. I did this mid-2021 and her only requirement was I wait until I was on my end of year break from uni in case it didnt agree with me. Downside is its off-label use wasnt covered by health insurance and a bottle cost over $100 AUD.


@marcjf I'm not really sure if this induces ketosis, Dr Goldner claims it alters metabolism, which I can vouch for. I was eating 1500 calories a day, and closely tracked this the first month. In this first month, my weight went from 48kg down to 42, then back up to 46 within the space of 3? weeks. From the calories I was consuming, I should have roughly maintained my original weight.

I luckily didn't have issue with this. In the past fasting while outside the house would actually help maintain whatever adrenaline was helping me feel normal. This protocol does provide a lot of water, 3-4 litres depending on your size. The volume of content you have to consume also meant that I was very regularly getting food and sugar into my system via smoothies which contained 75% veg, 25% fruit + avocado and water. It does seem our bodies had different reactions to fasting however.
 
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of 3L of water, 650g of raw cruciferous veg/leafy greens, 1/2 cup of chia or flax seed a day
Hmm, I took this one literally. 700 kcal including about 50g of carbs which is little enough to induce ketosis.
Now it turns out there were 1500 kcal (not too scarce for 48kg body weight) including smoothies not too calorie-rich but enough to keep glycolysis up?
Sorry I am gettin puzzled with that.o_O
 

Viala

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Hi @nolongerdiseased, congratulations! It is always encouraging to read a recovery story.

I've tried raw vegetables and fruit some time ago but I felt worse, cooked veggies work much better for me. I also did 'mostly a lot of veggies' diet for a couple of months, some raw and some cooked, there were so many veggies that I could barely eat it, and then I felt better, but I cannot say that it was thanks to that diet only. Might want to try it again.

I wonder, how much B12, iron and vitamin D did you take and for how long?
 
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@Andryr Don't worry, that's probably on me! It's been a bit of a struggle between keeping things detailed and informative enough to provide understanding without churning out 3 page essays haha. The above information is the base level of food intake required by Goldner to see results, which you can add any amount of additional raw veg, chia/flax and avocados to.

Goldner seems to simply describe the protocols effects on metabolism as "fastening" or "heightening". This does seem to play some kind of major step in facilitating symptom improvement, as the protocol is a much refined and edited version of her personal trainer husband's metabolism boosting diet. Goldner originally saw unexpected improvements in her Lupus after being on his diet to lose weight, which was high in omega 3 acids.

Goldner moreso talks about the role of the omega 6 and omega 3 pathways in facilitating symptom improvement. Her protol cuts omega 6 acids which feed inflammatory immune responses and replaces them with high amounts of omega 3 acids which are used by the body to create anti-inflammatory responses. Her resources directly reference the production of PGE2 and LTB4 vs PGE3 and LTB5, though I lack the scientific knowledge to understand the specific effects those have on the body.

@Viala Thank you for the kind words.
I took these supplements in varying amounts for the duration of my illness, and nothing seemed to make much difference. I was deficient in iron and vitamin D for pretty much the full 7 years, and even 4000-5000iu of vitamin D did not do much to raise my levels. Post-illness my levels have become higher but still a bit low. My B-12 has always been within normal levels.


Prior to full uptake of the Goldner protocol, diet changes did nothing to help my symptoms at all. Even the higher levels of chia and raw veg which I was consuming before going 'all in' made absolutely no difference. I had to follow the exact requirements of this very intense and very specific protocol in order to see any change in symptoms. I did not have any digestive issues or food sensitivities during my ME however, which I imagine would make something like this much harder to implement.
 

keepontruckin

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After reading this article my daughter tried it this week and is very pleased with reduced pain. Those of you with severe pain as she had should be able to see if it helps or not pretty quickly. I wonder if it is the amino acids in the kale, swiss chard and spinach which makes up 75% of the smoothies that make the difference. You can see samples of the smoothies online without buying the booklet. There may have been other foods causing her pain she was unaware of.
There are youtubes you can watch. Dr. Goldner says she has has success with long covid and autoimmune disease in general. She says it is not alway clear what autoimmune people have. Dont mix cooked foods in Follow it exactly.
I should mention she took the first batch with b12 shot
 
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