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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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What has helped

I plan to expand on this list in future posts, but for now I wanted to list what I have found so far that has helped me in case it can be of assistance to others. I am still only at 50%, but I consider if a big improvement over a year of being at 20%.

Gut:
No Wheat- no more bloating or acid reflux
Following general paleo/WAPF principles (no seed oils, no processed foods, low grains and sugars, high fat)- more strength, much less burping
Align Probiotics- no more constipation! have tried other probiotics and supplements to no avail
Magnesium (natural calm)- This helped me go more than 1x a week, but have stopped it now that I've discovered Align.

Exercise:
Body-weight strength training- am stronger and can walk further without getting exhausted
NO Aerobic exercise- if I even walk too fast I am liable to crash for days or longer
Light Walking- I try to walk somewhere every day I have some energy

Sleep:
No Wheat (again)- stopped waking up with night sweats
Attempt to sleep before 11- Not always successful, but I wake up a tiny bit better if I do this
Listen to Meditation MP3s- this is new for me, but seems to be helping me get to sleep
White noise- A air filter helps me get to sleep (I live in a place with a lot of street noise)

Energy:
Methyl B12-- this was the first supplement that moved from a 1/2 in energy up to a 3/4. I am not sure if it is still helping, but I keep taking it daily because of the amazing first reaction. I am unsure if the other methylation supplements have helped at all.
Adderall- it scares me for long-term use, but on days I really need to get something done it can be invaluable. Only works if I am not feeling nauseous or too exhausted beforehand.
9+ hours sleep- Even one night w/ too little sleep will cause problems for days.

-Anne

Comments

Hi,

Do you take an active folate such as Metafolin with the Mb12? The threads about folic acid vs. folate are interesintg, if you haven't seen them. (They are in the methylation area of the forum)
 
Hi l'engle-
I have been taking Metafolin, and find the methylation threads very interesting. I recently stopped taking a broad-spectrum B vitamin, since it contains folic acid, and now take methyl-B12 and metafolin instead. I know have the undermethylator form of the MTHFR gene, so am guessing that it is helpful for me to take the methyl forms of the vitamins. I think the supplements have helped me a bit, but don't seem to be the whole answer for me.
How about you? Are you having luck with the methylation protocol?
--Anne
 
Hi Anne,

I started a week ago taking Metafolin and Mb12. I'm also taking fish oil and now potassium as I was getting leg cramps. This seems to be helping. I'm only been on it for a while but I notice I've been able to stop salt loading, which is a big deal for me. I'm not sure yet about overall energy improvement. How much Mb12 do you usually take? did you also have the increased need for potassium? Take care.
 
Hi l'engle-
Sorry for the slow response. I typically take 10-15 mg of mb12 a day. I don't get leg cramps unless I walk too much, but have been taking potassium per Freddd's recommendations. I still seem to need to salt load to reduce the POTS symptoms, but I may just need to increase my potassium intake.
Let me know how your progress is going if you get a chance.
Cheers,
Anne
 

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