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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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Search results

  1. M

    What kitchen appliances are on your countertop?

    I'm with Sushi. My InstantPot gets daily use. Sometimes multiple times a day. I love the pressure cooker feature.
  2. M

    MTHFR homozygous but can't take B supplement - help needed

    I split my own dose into morning and afternoon. My girls respond better to all in the AM. But try it and see. It is a game of trial and error. My start up symptoms were horrible anxiety, insomnia, and restless muscles. I had hair loss as well. But like I said I did everything wrong and had...
  3. M

    Just finished an "intelligent" program of cardiac rehab and doubled my exercise capacity

    Keep us posted on this @Sushi I am interested to see if anything changes long term. Very curious to see if you can continue increasing the endurance. Fingers crossed for you.
  4. M

    Amino Acids for Hyperammonemia, Candida, And Nerve Repair?

    Regarding the SIBO, I'm sure you know it produces gross amounts of ammonia as well. I took one course of Rifaximin for my SIBO. Worked wonders. It lowered my ammonia drastically. Then I started on a probiotic regime known to lower ammonia production in the gut. The yeast overgrowth could very...
  5. M

    MTHFR homozygous but can't take B supplement - help needed

    A quick mention about start up symptoms... I think it all depends on the person and possibly the situation. I did everything out of order when I was starting. I took folate before the b12, I was on the wrong type of b12 for my body, I had years of anemia to correct the list of mistakes goes on...
  6. M

    MTHFR homozygous but can't take B supplement - help needed

    So for my girls I had them start on just the hydroxy. Ben Lynch recommends building up your supply of b12 before you even introduce the folate. I kept them on strictly b12 for a full month. They take an insane amount. But they seem to need it. They take two capsules of 2,000 mcgs a day. If they...
  7. M

    MTHFR homozygous but can't take B supplement - help needed

    What alele are you? If it is the c677t, then you may want to avoid methylcobalamin for good. My girls are homozygous for that and do NOT tolerate that or any type of b complex. They take strictly hydroxy and the methylfolate. If their b12 isn't considerably higher than their folate they get...
  8. M

    MTHFR homozygous but can't take B supplement - help needed

    Yes methylfolate. But I didn't start it until quite a while after I had been taking the b12.
  9. M

    MTHFR homozygous but can't take B supplement - help needed

    Try taking hydroxycobalamin instead of methylcobalamin. Also take it by itself, not in a complex. I don't tolerate complexes, but can take hydroxycobalamin separately.
  10. M

    Help! Neurologist thinks probable MND/ALS

    I'm sorry I can't help you at all, but hang in there. I hope you find some answers and some strength for whatever lies ahead.
  11. M

    Supplement with B12 even with normal/high serum levels?

    The methylation rapidly decreases the b12. Butyou might start on smaller doses b12 to begin with and see if you might need more.
  12. M

    Help! Restless legs!

    Try taking some sodium. If your potassium gets to high it can cause the same symptoms as low potassium. I sometimes have luck with a swig of sea salt water before bed. Remember, with the electrolytes it's a constant balancing act.
  13. M

    They found something growing in the lungs

    Sorry I'm foggy, but are you talking about researching autoimmunity? I haven't searched the topic in general. I do know that when I finally got diagnosed with celiac disease and started learning about the chain reactions that occur in my body once my immune system goes off I was shocked. One of...
  14. M

    High ASOT titre that antibiotics can’t touch.

    I have heard that a lot of kids who have PANDAS or chronic strep infections have success treating with Monolaurin which is known as a biofilm buster. As for the SIBO that is a long uphill battle, but you can win if you are diligent. Start with a diet overhaul. No sugar, no empty calories...
  15. M

    What company would you seriously recommend?

    I'm agree with @Moof. We did genetic testing for the entire family due to some other issues that came up that were hereditary. My husband has the very same MTHFR SNPs as I do and he is healthy as a horse. My kids had some worse genetic profiles than I and they have boundless energy. Until they...
  16. M

    They found something growing in the lungs

    Your issue with your lungs would have weakened you to the point where you may be more susceptible to things like mold or dust mites or allergies. Also autoimmune disease messes things up pretty bad.Once your immune system is on high alert it can do all kinds of strange things.
  17. M

    Ativan, l-theanine, serotonin, gelatin, glycine, glutamate, etc.!

    Did you take tuarine supplements to raise your levels?
  18. M

    Curious if you have been helped by coq10/pqq combo or ubiqunol/pqq?

    100 mg once in the AM. For several months I was taking it once in the AM and once at noon, so 200 mg. But eventually it started causing a sort of adrenaline rush, I backed it down to once a day and I've been fine. I've tried dropping it altogether and it was a major detriment. So I just stick...
  19. M

    Curious if you have been helped by coq10/pqq combo or ubiqunol/pqq?

    I am severe and I take ubiquinol every day. It helps quite a bit with my air hunger, anemic type of feeling.
  20. M

    They found something growing in the lungs

    Hang in there. I am sure going without optimal oxygen for so long has done a number on multiple systems so give your body time to heal before you decide how far your recovery has taken you. Also know that high doses of prednisone will also have multiple effects that your body will need to fix...
  21. M

    Mitochondra in ME/CFS

    Thanks for sharing this.
  22. M

    Lauricidin insomnia cold sore

    Try drinking some electrolytes or taking some potassium. For whatever reason the body seems to burn through the potassium when it is healing.
  23. M

    Watch out for 'feather duvet lung' caution doctors

    A common misconception is that celiac has to cause diarrhea. That is very false. You need to look into finding a different Dr. and getting your antibody test done.
  24. M

    DOES THIS SEEM LIKE IBS?

    Have you tried any supplements to help the constipation? I take magnesium citrate and potassium glucanate and it really helps. Also you may want to be tested for celiac disease. A common misconception is that celiac only causes diarrhea but it can be the opposite or even a combo. With the pain...
  25. M

    Speaking of the desert...who here has went there and how long did you stay for before improving?

    I'm in Navajo County area. Not as high as Flagstaff. But I grew up in Graham County only two hours away from the border. Fire season tends to be rough, but it clears up fast.
  26. M

    Speaking of the desert...who here has went there and how long did you stay for before improving?

    Same. High desert in AZ. I've lived in the desert all my life. Didn't keep me from getting ME, but I love that it is easy to avoid mold here. I need the dry heat.
  27. M

    LICORICE - ANYONE WITH FEEDBACK?

    It gives me insomnia. Real bad.
  28. M

    Why SEIDs patients should avoid cats

    I thought that toxoplasmosis was one of those things that everyone carried and no one has symptoms except a lucky few. Am I wrong?