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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. BFG

    hypokalemia (low plasma potassium) induced hyponatremia (low sodium)

    my potassium has always been low since becoming ill with cfs and now after 5 years with cfs, my Potassium levels usually ranges from 3.1-3.5, standard range (3.5- 5.1) my sodium is usually borderline low at 136-138 (136-145). My chloride is borderline low at 100 (98-107). I cant tolerate too...
  2. BFG

    Glutamate in food

    Yes I am very sensitive to many things in foods especially the aspartic acid, cysteine, GLUTAMIC ACID, salicylates. I can no longer tolerate any meats or foods with protein content, even vegetable sources like peas(but not as bad as the meat sources). If I eat foods high in protein It will...
  3. BFG

    Methyl B12, Vit D increases excitotoxicity, what to do??

    hi all, I appreciate all the suggestions, especially when energy is so scarce with us. Thank You. Im of the belief that methyl b12 is the form best used by the body. When I first came down with cfs/me I was taking 20 mg jarrows no problem and it healed a lot of my nerve and sensory issues. Now...
  4. BFG

    Methyl B12, Vit D increases excitotoxicity, what to do??

    Hi guys, I recently tested some of my nutrient status' due to my deteriorating condition and here are the results: serum b12: 215pg/mL (193-982) serum MMA: 149nmol/L (87-318) serum folate: 28.2 ng/mL (3.1-17.5) H RBC folate: 545ng/mL (>280) H homocysteine: 13.1 umol/L (3.2-10.7) H Vitamin B1...
  5. BFG

    is it cfs or lyme disease?

    Hey guys, Im trying to find out if you guys with diagnosed lyme disease have the same lab markers as a lot of the cfs patients. Im trying to figure out if my problem is viral or lyme bacterial or both. Have you guys with diagnosed lyme had these markers tested and if so do you mind sharing...
  6. BFG

    Does this sound like lyme?

    I have most of the symptoms you describe. I have run many tests and still have not found the root cause of my issues. But what i have found is impaired methylation, heavy metal burden, impaired immune system, peripheral neuropathy. Its funny that every specialist i see will tell me what they...
  7. BFG

    Low CD4 and Low NK

    @Sinclair Hi, i have also tested low for cd4 cells and slightly elevated cd8 and cd4/ cd8 ratio similar to yours at 0.53 I also have low nk cell function, not count if that was what you were referring to. Im not sure if we're the minority with low cd4, because ive asked many of the best cfs...
  8. BFG

    Best tolerated - Kefir? Yogurt? Lacto/Bifido Probiotics? Soil based? RS?

    I have not taken antibiotics, but have bad inflammation in my small intestine, really bad intolerances to everything, anf alternating constipation and undigested excess fermented stools. I have tried many probiotic pills that really didnt help much. They either caused severe herx with increased...
  9. BFG

    Methylation tests??

    I am interested in the hdri methylation panel. Is this covered by insurance and do I need a doctor to Oder this test? Anyone know how much this test is? Thanks.
  10. BFG

    Keep Dr. Chia appointment or cancel??

    Hi Emilo, I saw Dr. Chia last year around the same time. He is really a nice and thorough doctor. He found semi highnviral titers and subclass 3 def and low cd4 count. Even though i was negative for entervirus via titers he still believed i had an enteroviral infection from my symptoms and...
  11. BFG

    enteragam for gut issues

    Justa follow up on how i did with enteragam. I only took it for one day and Took about one tenth of the recomennded dose. It sememed to give me a bit of energy for a little while and then it greatly increased my pins and needle and neuropathy feeling all over my body. This lasted for 4 days...
  12. BFG

    HSV 1/2 IgG and IgM results - labcorp

    I dont know if that number is considered high, but i am also going to see montoyas physicians assistant in a month and hope he will also test my hsv titers. Are you going to see his physician assistant or are you seeing him? Her coordinator told me that hes not seeing new patients anymore.
  13. BFG

    Can I get other places to interpret my 23andme results?

    http://geneticgenie.org Most people are running their 23andme raw data through this website for their methylation and detox status. http://www.mthfrsupport.com This is a more thorough analysis of detox, methlation, mitochondrial,immune etc.this one costs $20, but supports the website. And...
  14. BFG

    enteragam for gut issues

    @minkeygirl never heard of acacia. Did it work well for you? @Ema I've always wanted to try s bouliardi. But I'm sort of cautious because I've read studies saying immunocompromised patients have had fungemia infection from s boulardii. And I think I count as immunocompromised. @Aileen thanks...
  15. BFG

    enteragam for gut issues

    Its expensive ifinsurance wont cover it, 375 for month supply. Im gonna try it anyway because i really need to stop my diarrhea. Let you guys know how it goes.
  16. BFG

    enteragam for gut issues

    Hey guys, Have any of you tried this new prescription medical grade food? Its called enteragam and it is made from bovine serum immunogobulins to treat hiv enteropathy and ibs d. It was a former xymogen product called igg2000 df and a product called immunolin(which is discontinud), but i think...
  17. BFG

    Story of hope...but still broke

    @karlish hey I don't know if your still visiting this site, but can you tell me how you were diagnosed with CIDP? I am in a similar situation with similar symptoms.
  18. BFG

    Treatment Suggestions for my worsening condition

    Thanks for the suggestion have some on the way. Thank you for the primer, and i do agree i need to find the cause, but its usually tough geting docs to give you a full workup even with serious symptoms.
  19. BFG

    Treatment Suggestions for my worsening condition

    Hello guys, Since my move out of my moldy house 3 weeks ago my condition has become worse. I am bedbound again since becoming ill almost two years ago. My symptoms that I had when I first became ill such as severe fatigue(can barely stand up), bad peripheral neuropathy, abnormal gait...
  20. BFG

    Gut microbes-pathogenesis of CFS

    Yes i took 5000 iu for 2 months before i became sick and my level rose to 52 from 30.
  21. BFG

    Gut microbes-pathogenesis of CFS

    I have the VDR +/+ mutation. I tested my 25 hydroxy levels and it was 32 in april 2013. I did not take any vitamin d supplements and sunbathed on my whole body for about 10-25 min, 4-5 days per week at noon from may-aug. I tested my levels again and my vitamin d was 32 after all that sun. The...
  22. BFG

    alpha-lipoic acid & shortness of breath

    I get the exact same thing and whenever i bend over. My cardiologist explained to me that people with mitral valve prolapse tend to have this problem. He said mine was very mild. You might want to be carefulwith the ala which will chelate heavy metals. Andy cutler warns of improper use of ala...
  23. BFG

    Carnitine = more fatigue

    I bought doctors best acetyl l carnitine a year ago and have tried to add it to my daily regimen about 6 times throughout the year and all six times it gave me symptoms to waht you describe, kind of dazed and increased fatigue for a couple days.
  24. BFG

    anxiety, food intolerances, cbs and sulfation

    @Violeta thanks I did read it and learned a lot, but am a little more confused. @Star-Anise thank you for sharing your experience and encouraging to hear of your sucess. I think I will try the charcoal flushes and I have some molybdenum on the way, but I cannot tolerate magnesium because it...
  25. BFG

    anxiety, food intolerances, cbs and sulfation

    Taniaaust1 did you find molybdenum helpful for any symptoms?my molybdenum looks to be in the normal range, but i think i read somewhere that hair was not a good indicator for moly in tissues. I have had many tests done, but cant seem to find a doctor who knows how to treat. If anyone wants to...
  26. BFG

    anxiety, food intolerances, cbs and sulfation

    Hi guys, Lately I have been having pretty bad panic attacks and anxiety with increasing food intolerances to sulfury foods such as cruciferous veggies and eggs, and foods with high salicylate/phenol content. So I read around on the forums and on fdc/cutler book and forums and think this my be...
  27. BFG

    ERMI test results

    I appreciate your reply slayadragon. I am looking to move, but I don't know if it will be for nothing if the next home has a mold problem or not. I think most houses have mold. WOuld you recommend any good places to move to around the sacramento area?
  28. BFG

    ERMI test results

    Hello I am working with my doctor to try and work toward recovery, but it is slow going. I have a lot of things going for me, mercury/arsenic, infections, immune problems, methylation blocks, etc. And now Mold problems. My doc tells me to get out of my house as fast as possible. And he has...
  29. BFG

    Simpliefied and Active Protocols, Paradoxical Folate Deficiency, Metafolin and Balanc

    I am taking a low dose b complex transdermal with the active bs (no folate/b12), 2000mcg mb12 sublingual, and sublingual 200mcg methylfolate/250mcg adeno/mb12 , I do okay with the b complex and b12, but when I take the methylfolate/adeno sublingual I feel good at first, but hours to days later...
  30. BFG

    Other ways of taking b complex and minerals

    The b12 spray only lasted for 8 sprays or did you put on five sprays a day? Lol:eek: If it only lsated for 8 days the company really should refund you or give you a replacement. How is it working for you zo far @maryb?