How I got in remission/cured my ME/CFS

[Ali_Mardiyev]

Hello everyone, I hope you're managing your disease well. Haven't posted in here for a while, mainly because I got in remission May/June 2024 and just started living life again, got a job etc. But I feel, that I owe this community a lot, mainly for emotional support during my hardest days. I always planned to make an extensive recovery post and now that I'm on a 2 week vacation, I'm doing this and will answer as much of your questions as I can.

I won't go in depth about my disease onset and previous treatment strategies (you can view my introduction post for that.) I was 19 years old, when I got ill, so almost exactly 3 years ago. I am a male, feel like this is important to say, because treatment strategy may have some minor differences depending on sex.

In December 2023 I got an SGB (stellate ganglion block) done on both sides of my neck, with a 14 day difference between treatments. That partially helped with some symptoms, like light/sound sensitivity, akathisia, constant internal tension/uneasiness, brain fog and had a minor effect on sleep quality (I still couldn't fall asleep before 2-3 A.M, but the sleep itself was more restoring). Didn't affect POTS/dysautonomia (blood pressure was 130-140 over 85-90, and resting heart rate 84-86) and fatigue.

Then in late February I went to a cardiologist, who actually took my disease seriously, and most importantly was non-judgemental/open-minded and wanted to hear my opinion, when it came to treatment strategies/suggestions. She prescribed me 2.5mg of bisoprolol (first generation selective beta-blocker, which primarily affects cardiac symptoms, without a direct effect on the nervous system). Plus, she advised me to start taking 15-20 minute low paced walks 2-3 times a week, IF I felt comfortable (it's important to note, that my fatigue did improve by ~20% at this time). I immediately starting taking bisoprolol, but was skeptical about walking till April. In April I decided to start walking, and to increase my limited recovery capabilities, I started injecting 0.5ml (125mg) of omnadren (testosterone) twice a week. Additionaly, I decided to start taking low-dose Paxil/Paroxetine (a relatively mild and low side effect profile SSRI), 25mg Quetiapine (antipsychotic), and 1 mg of Klonopin twice a day. All this, with the goal to restore/improve my neurotransmitter balance, nervous system, sleep etc.
The exact protocol was as follows:
1. 0.5ml (125mg) omnadren Mondays and Thursdays. Stopped this April, did a PCT with tamoxifen for 6 weeks, and restored my natural testosterone production.
2. Paxil - 20mg every morning after breakfast (I started with 1/4 (5mg) of a pill and increased by 5mg every 5-7 days, depending on how comfortable I felt. Luckily didn't have any issues with side effects.) Slowly weaned off this May.
3. Quetiapine - 1/4 (25mg) pill every night at 9-10 P.M. This was done purely to restore/improve my sleep timing and quality. Did it's job, I would fall asleep 1-2 hours after taking it, and slept for 8-9 hours every night. Still take it to this day.
4. Klonopin - 1mg twice a day (12 and 8 P.M.) mainly to ease the possible startup side effects of Paxil. Did it's job. Slowly weaned off in August 2024.
5. Bisoprolol - 1 pill (2.5mg) once a day. Timing is not, that important. I took it every evening, usually after my walks. Currently take 1/2 pill (1.25mg) every evening.
I also started intermittent fasting 16/8 in order to improve my metabolism/insulin sensitivity and lose the excess weight, that I gained in 1.5 years of being stuck at home. My weight at the time was ~220 lbs ~28% body fat at 6" ft. Before getting ME/CFS, I was 190 lbs ~15% body fat, so pretty muscular. This is the exact meal protocol:
Breakfast (12-1 P.M.):
70 grams of oatmeal
1 medium apple/banana
200 grams of cottage cheese
Lunch (4 P.M.):
75 grams of buckwheat
350 grams of chicken breast
Tomato and cucumber salad
Dinner (7-8 P.M):
75 grams of buckwheat
150 grams of chicken breast
2-3 boiled eggs
Tomato and cucumber salad

The improvements came in pretty fast. By end of April I was able to easily do 20 minute walks 3 times a week without getting fatigue/PEM.
In May I starting walking for 40 minutes 3x a week. Still 0 fatigue/PEM. Mid May I was able to freely do homechores (cooking, some cleaning etc.).
In June I decided to try going to the gym for the first time in almost 2 years and do light-moderate exercises. Managed to squat 150 lbs for 8 and bench 140 for 7 without any discomfort/pain. So I started going to the gym twice a week and do full body workouts. This further improved my strength, conditioning, and cardiovascular symptoms. Late June my resting heart rate dropped to 65 bpm, and blood pressure was 115-120 over 80. POTS almost dissapeared and fatigue/PEM was gone.
Almost seemed to good to be true, and I was very cautious/afraid of a relapse, but luckily everything was stable.
Starting from late July I was training 3 times a week in the gym, and doing 60-80 minute walks on rest days (other 4 days). In august I lost all the excess weight and weighed 180 lbs.
As everything was going perfect I decided to apply for a few jobs, and landed a job as a PHE teacher at a private school, where I continue working to this day.


Summarizing, I think the treatment strategy, should focus on:
1. Exogenously optimizing/restoring hormones, as most people with ME/CFS have hormone deficiencies/abnormalities, due to appetite and food intolerance/absorption issues.
For men: testosterone, thyroid hormones (T3, T4), adrenal hormones (DHEA, cortisol, progesterone), plus growth hormone (somatotropin) if you can afford it. Also to increase insulin sensitivity you can use metformin or high quality berberine.
For women: estradiol, progesterone, thyroid hormones (T3, T4), adrenal hormones (DHEA, cortisol), plus growth hormone (somatotropin) if you can afford it. Also to increase insulin sensitivity you can use metformin or high quality berberine.
2. Restoring neurotransmitter balance, which will reduce neuroinflammation. A mild SSRI, like Paroxetine or even better Fluvoxamine will help with this. An antipsychotic or an antihistamine may be helpful if sleep issues are present.
3. Restoring vitamin and mineral balance. This is something, that didn't directly take part in my treatment, but to this day I take 2 week cycles of Vitamin B shots every 2-3 month, plus I inject 300k i.u. of Vitamin D every 30-40 days. And I feel this helps my recovery from training.
4. Improving cardiovascular symptoms (POTS, dysautonomia etc.). This is gonna change depending on the person, but just try to find a good cardiologist, who will be eager to listen and consult with you.
5. Mild exercise - whatever works for you. Even a 10 minute walk twice a week will do for the beginning. Mind you I was a young semi-pro powerlifter before getting ill, and even in my case I started walking 2-3 times a week for 20 minutes.


My life is going pretty well right now, ME/CFS seems long gone and just like an awful fever dream. I want to thank everyone on here and I hope all of you will get in remission one way or another.

If you have any questions/opinions feel free to ask and comment. I will try to answer as much as I can in this 2 week period!

 

[Wayne]

If you have any questions/opinions feel free to ask and comment.

Hi @Ali_Mardiyev -- Thanks much for taking the time to describe in detail the path you took to remission. I actually have a lot of questions. I'll just start jotting them (in no particular order)?

1) What triggered your ME/CFS to begin with?
2) What are the things that you believe helped you most in your recovery?
3) Do you think intermittent fasting and strict diet was key? What do you think was MOST important?
4) How much do you credit the benzodiazapines for your improvement, and are you still taking them?
5) What made you decide to do the stellate ganglion block?
6) I'm especially interested in your experience with akathisia. Do you know what caused it? Is it completely resolved? It's probably my most difficult thing to deal with, and I'm wondering whether an SGB might be appropriate for me.

That seems like a pretty good start. Thanks again for taking the time to share your story. I'll be interested to see how this thread progresses over the next couple of weeks!

 

[hapl808]

Glad to hear. I think early on (after three years it doesn't feel early, but compared to 30 years), and also being under 40 years old really increases the possibility of responding positively to treatment.

Also curious about what @Wayne asked in what do you think helped the most. Interesting that you have a number of things that affect the nervous system - from klonipin, to Paxil, to beta blockers. When you say 'I decided', were you working with your cardiologist or another doctor on the rather complex combo of things, or most experimenting on your own?

I also think your care in not trying to push through is very important. In my early days, ALL doctors encouraged me to push through fatigue, and since that aligned with my inclination - I did it often, despite years of declining function and daily or weekly crashes.

 

[Ali_Mardiyev]

Hi @Ali_Mardiyev -- Thanks much for taking the time to describe in detail the path you took to remission. I actually have a lot of questions. I'll just start jotting them (in no particular order)?

1) What triggered your ME/CFS to begin with?
2) What are the things that you believe helped you most in your recovery?
3) Do you think intermittent fasting and strict diet was key? What do you think was MOST important?
4) How much do you credit the benzodiazapines for your improvement, and are you still taking them?
5) What made you decide to do the stellate ganglion block?
6) I'm especially interested in your experience with akathisia. Do you know what caused it? Is it completely resolved? It's probably my most difficult thing to deal with, and I'm wondering whether an SGB might be appropriate for me.

That seems like a pretty good start. Thanks again for taking the time to share your story. I'll be interested to see how this thread progresses over the next couple of weeks!

1) Dexamethasone injections. In particular, I did 15 shots of 10mg (which is a lot, for reference it equals to 60mg prednisone) each in a span of 56 days. Corticosteroids are know to cause ME/CFS in certain individuals. I researched this topic a lot, and found several people on different forums in whom corticosteroids caused the onset of the disease. Here is a link to my introduction post: https://forums.phoenixrising.me/threads/introduction-theory.89177/#post-2422489

2) I think CFS is a multifactorial disease, and should be treated as such. There three maim systems, that it affects: Nervous, Immune and Hormonal. All these systems are intertwined, i.e they heavily influence eachother. I will try to expand on this topic:
1. The first step was getting the SGB, which allegedly blocks the sympathetic nerves, which in turn help with oversensitivity, internal tension/akathisia and could also help with cardiovascular symptoms.
2. After that, the goal was to improve recovery capabilities by taking exogenous testosterone, while simultaneously improving insulin sensitivity and metabolism by following an intermittent fasting protocol, which consisted of whole foods. All of this was supposed to help with fatigue and PEM by improving mitochondrial function. Luckily it did exactly that.
P.S. there is a relatively new drug on the market, called "slu pp 332," which improving mitochondrial function. Something interesting to look into.
3. Incorporating mild physical activity, to further restore metabolic function, increase ATP synthesis and accomodate the ANS to "stress."

3) Like I said everything was important, but a whole food diet undeniably played a huge role. Later in my journey, I actually switched to a 18/6 protocol, before stopping to intermitten fast in November 2024. Currently I'm eating 4 times a day, and I plan to start bulking (gaining muscle mass) in September.

4) I only took benzodiazepines for 3 months, mostly as a band aid to possible startup side effects from Paxil. I took 2mg a day for a month, after which I started to drop by 0.25mg every week, until fully going off in August of 2024. I still have ~20 pills of klonopin at home, which I may use if needed.

5) Reddit success stories ME/CFS and covidlonghaulers community. People stated, that it particularly helped with hyperPOTS symptoms, which is exactly what I had. In my case it didn't really affect those symptoms, but helped with reducing sensitivity, akathisia and internal tension/restlessness.

6) I think a combination of things caused it, particularly sympathetic overdrive, which led to unrestorative sleep (I would see dreams the whole night every time I slept, which indicates lack of deep sleep). From what I've heard it's a 50/50 with getting an SGB. Like, I said in my case it didn't helped the symptoms I was hoping for, but did help the other symptoms. So overall, it was 100% worth getting it for me. Just make sure to find a credible specialist, who has tons of experience with giving SGBs.


I hope my answers helped you. Feel free to ask more!

 

[Ali_Mardiyev]

Glad to hear. I think early on (after three years it doesn't feel early, but compared to 30 years), and also being under 40 years old really increases the possibility of responding positively to treatment.

Also curious about what @Wayne asked in what do you think helped the most. Interesting that you have a number of things that affect the nervous system - from klonipin, to Paxil, to beta blockers. When you say 'I decided', were you working with your cardiologist or another doctor on the rather complex combo of things, or most experimenting on your own?

I also think your care in not trying to push through is very important. In my early days, ALL doctors encouraged me to push through fatigue, and since that aligned with my inclination - I did it often, despite years of declining function and daily or weekly crashes.

I just answered everything Wayne asked, you can see above, if interested.

No I agree, I was lucky to get away and improve early on. I got ill in August 2022, and got in full remission by July/August 2024.

The beta blockers were prescribed by a cardiologist, everything else was an idea of my own. But I did a TON of research, in those 18-20 months, to design a protocol, that would help me improve by tackling the disease from all possible angles. The only reason for me not doing anything earlier, was the fear/risk of going from moderate to severe by following the protocol. But after getting the SGB, I felt good enough to give it a go.

Yes, not pushing myself early on was extremely important, as I said that my fatigue had improved by itself to a certain point, when I started the treatment. I don't think I would manage to recover as fast, If I had listened to all the doctors (3 psychiatrists, 2 neurologists, 2 endocrinologists, a gastroentrologist, a psychologist) and my parents, who all dismissed the possibility, that I have ME/CFS, and almost forced me to do physical activity. Luckily, I am stubborn lol!
In the end my parents believed me, payed for my SGB and further treatment, and fully supported me, till I recovered and got a job.

 

[ryanc97]

I suspect you probably didn't have CFS in the first place. What you described does not sound like CFS. Do you have unrefreshing sleep?

You probably had some adverse reaction to all the bodybuilding drugs you were taking and it went away.