• Welcome to Phoenix Rising!

    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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Search results

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    Fixing Leaky Gut Helps ME/CFS, and Sometimes Achieves Full Remission

    I was taking a teaspon of powder for about 6 months last year L-glutamine was first calming me down but then at some point it flipped and before I realized I was in the biggest episode of anxiety ever. Exhausted, lightheaded and totally down. It helped me realize how big impact anxiety has on my...
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    Homozygous Mutations in NDUFS7: What Does This Mean?

    I got three NDUFS7 +/+ mutations (rs2332496, rs1142530, rs7258846) and also the NDUF3 +/+ (rs4147730), I’m also +/- on three off the NDUFS8. Also some of the of the COMT and MTHFR ones. I also found out that I'm deficient in some B vitamins: especially B1, B7, B3 and B5
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    Homozygous Mutations in NDUFS7: What Does This Mean?

    Been there so many times :)
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    diagnosed by exclusion at beth israel/boston, scared with no direction..what now?

    I had to go back for that extra test too. I would go see that functional md if you have a good feel abouth him, they are more educated in the alternative approaches and testing and the traditional medicine does not have much to offer us anyway. Try also doing some small dietary changes, like...
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    Fixing Leaky Gut Helps ME/CFS, and Sometimes Achieves Full Remission

    Pumpkins: butternut squash roasted, spaghetti squash, cabbage, beets, carrots, cauliflower, broccoli, greens like spinach. Pick up a good paleo cookbook and go exploring or like ThePaleoMom on Facebook to get a steady stream of paleo recipes :) Paleo does not have to be low in carbs, but it has...
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    How big of a role does diet play?

    I'm on Paleo since last September and have seen significant improvement after 3 years of misery. No headaches, significantly less fatigue and better mental health. Im Currently exploring some stricter paleo variations like the Autoimmune protocol per the new The Autoimmune Protocol book to get...
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    diagnosed by exclusion at beth israel/boston, scared with no direction..what now?

    Hi, Good luck with Enlander, I was there last year, unfortunately it did not work form me.. Please go prepared, check their website and know what they offer, he was very brief with me and it felt like he is giving a standard protocol to anybody who qualifies. They did a lot of testing, most of...
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    Diet and improvement

    Sound like paleo is helping a lot of people here :) I feel soo blessed that I tried that this summer I wonder if maybe I just have celiac, but then I was tested with an upper endoscopy before.... I have some of the best days in 4 years lately :) I still get sick sometimes, i'm trying to figure...
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    Paleo Diet? Has anyone tried it?

    I started paleo two months ago and found it heped me a lot. It took away the headaches and dizzines that started earlier this year, my moods are better. It did not help yet with the muscle aches though... I found the "Practical Paleo" book very helpfull, it has both the why and how in quite...
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    Diet and improvement

    I started Paleo two months ago and I see significant improvement too. I tried just gluten free and low sugar before and it is significantly better. They recomend doing strict paleo for 30 days to see improvement, and then you can relax it a little bit. I follow the guidelines from the "Practical...
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    Dr Blum and the Immune System Recovery book

    Hi Sasha, are you still implementing? My headaches cleared after 2 months gluten/corn free :) And the l-glutamine for leaky gut seems to be a magic ingredient for my energy levels...
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    Dr Blum and the Immune System Recovery book

    she was on dr Oz recently her visits are expensive ($750) and the supplements on her website also quite pricy but the book is just $18.99
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    Good Relaxation Techniques

    I use the StressEraser biofeedback device http://stresseraser.com/ you just coordinate breathing with your heart, totally silent or with a lith ticking puts me to sleep in 15 min, you should do three sesions a day for optimal effects
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    Dr Blum and the Immune System Recovery book

    Did anybody else read The Immune System Recovery Plan book by dr Susan Blum or visit her in Rye, NY. She is an autoimmune disease doctor with functional medicine approach (food, stress mgmt and supplements) The book is very interesting and easy to read and explains well what can affect your...
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    Dizzy, without even moving

    Just to add, I'm currently on hepapressin shots with b12, but had that symptoms before starting, I have elevated EBV,
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    Dizzy, without even moving

    I do have these weird dizzy spells and was wondering if any body else has this or could explain. I get dizzy, without even moving, it comes a few times a week, not related to eating, not relieved with food It comes with first a hot sensation and really bad weakness and then chills, I drink a...
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    Headache on hepapressin shots?

    Hi, I have been sick for about two years now with elevated EBV. Tried Valtrex 500day for 8 monhs last year with no change in markers and symptoms and four months ago switched to Hepapressin protocol under Enlander. A month ago, thee months into the protocol, headaches started: almost constant...
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    Doctor in NY who does comprehensive testing

    I have seen dr Levine and Dr EnlanderI have seen dr Levine in November 2011 ,she looked at all my past bloodwork, did more viral bloodwork and offered Valtrex 500 mg for EBV also suplementing D3 and something else. The office is small and old, she often picks up the phone herself, medical...