• 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

  1. S

    Helping my two autistic sons

    Have you seen this site yet: http://www.gdx.net/core/interpretive-guides/Amino-Acids-Interp-Guide.pdf I have been studying our NutraEvals like crazy this year and did not even know they had this. I think everything on here lines up exactly with my son's treatments.
  2. S

    MTHFS defect (folinic acid intolerance) - request for genetic data

    Thanks, @Critterina I looked at the document, but I used MTHFRsupport.com and they only report on 1 MTHFS gene mutation. Do you get several more by using one of the other sites?
  3. S

    Helping my two autistic sons

    I was looking it over and was wondering if he had already been taking methylcobalamin form of B12 and methylfolate form of B9 before he went off supplements the week prior to test. Your son's B9 and B12 were low but not in the high need range as was some of the other supplements. This is good...
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    Helping my two autistic sons

    Hi, My first born has Asperger's form of autism and Sensory Processing Disorder. He's been getting the NutraEval every 4 months over this last year as we are monitoring whether the treatment protocol works and has been getting much, much better. I can definitely share with you what I know and...
  5. S

    Is ME due to Ehlers-Danlos Syndrome "stretchy veins"

    Interesting links and discussion. My son was seen by geneticist at Wash U and given dxnosis of EDS but her treatment was PT not IM b12. She also wanted to just watch him for a year. During that year we saw an Integrative Medicine dr who did the NutrEval which showed massive b vitamin...
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    MTHFS defect (folinic acid intolerance) - request for genetic data

    @Critterina that would be awesome. As I was reading thru posts I was thinking it would be great to have an updated summary. My brother also tested out with the MTHFS +/+. He's always hated green veg. My son doesn't seem to do too bad with green now that he's on methylfolate, but he's on...
  7. S

    MTHFS defect (folinic acid intolerance) - request for genetic data

    This is all very interesting. My son has the MTHFS +/+ still trying to understand it all.
  8. S

    One bug after another.

    Most plastic cookware made before 2000 was made with BPA. Most companies in the U.S. have started using other forms of plastic and will advertise as BPA free. Tupperware remains defiant and refuses to stop using BPA except in baby bottles. California, I believe, has banned it. I think your...
  9. S

    One bug after another.

    We had several years where the four of us just passed bugs back and forth, couldn't seem to get well. Finally I started gathering tips on helping cut back on flu and was able to break the cycle. We still get sick but we don't pass it as much and were not sick all winter. Mind you, we're still...
  10. S

    Carnitine = more fatigue

    That's a good point to watch out for the rebalancing. We got back the 3rd nutraEval since starting treatment and his folate and potassium were both still low even tho he's on so much folate, b12, and b6. Oh and potassium but apparently not enough. That could be a reason for the highs and lows...
  11. S

    A Year in the Life: From Vaccination Trigger to Diagnosis of ME (Part 2 of 2)

    Thanks for sharing! You have a great voice!
  12. S

    Carnitine = more fatigue

    Great points about insulin, @Leopardtail ! We're finally getting ready to start l-carnitine fumurate with my First Born. He's 15, tall, extremely skinny/muscle atrophic. He's been doing a lot better on the active b12s but still worried about the muscle wasting and he has periods during the...
  13. S

    B-12 - The Hidden Story

    Wow! Great article!
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    ‪Brain Allergy and ASD‬: B12/folate connection?

    Next they need to understand why this is happening. Makes me ask whether the missing link here might be the elements of the Deadlock Quartet? ahmo https://www.youtube.com/watch?feature=player_detailpage&v=9QbZp3WcC1Q His website: http://mastcellmaster.com/publications.php -------Thanks for...
  15. S

    NAC and feeling worse. Due to methylation or biofilm?

    My son was worse on NAC. He turned out to be worse on glutathione and any of the precursors to glutathione (including NAC) and had significant crashes. When we got the genetic methylation panel, he turned up with a few genes that indicate his liver cannot process glutathione very fast so large...
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    Resource for converting some gene formats

    Have you looked into this one: www.nutrahackerblog.com. ? They have a service similar to mthfrsupport where you can run raw data to get a report but nutrahacker produces a report that gives you recommendations for diet and supplements. I can't recommend since I haven't actually tried it...
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    Please help, I'm worse every day and don't know what to do.

    Hi, EMilo, I'm sorry tohear things are getting worse. How have your sleep muscle cramp issues been? Also, do you have someone at home helping you research or organize? Last year, I was so foggy headed there were big instructions I overlooked in the notes from my doc. I also found some of the...
  18. S

    Gluten sensitivity and the Central Nervous System

    My son had severe sensory processing disorder and autistic-like symptoms, the worst of which cleared up on the gf/cf diet. He never had an MRI to compare white lesions. I think this is an area that deserves more research money.
  19. S

    Out of Darkness Comes Light - mysteriously beautiful photographs from a bedbound sufferer

    Beautiful and essential.
  20. S

    Need large amounts of Mfolate throughout day AND potassium--but potassium opposes MF--help?!

    Hmmm, connections bells dinging in my head over how this fits snuggly with some of the other issues, but will have to mull and research after the holidays. We'll be off everything between Christmas and New Year in order to have follow up NutrEval. Will be adding l carnitine officially then and...
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    My son has just been diagnosed with Autism

    Hi @allyann , I'm so sorry to hear that you and your son are going through this. My oldest has Asperger's form of Autism with definite Sensory Processing Disorder. Sensory Processing Disorder has exactly the same symptoms of B12 deficiency and as he grew up he exhibited more and more symptoms...
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    Need large amounts of Mfolate throughout day AND potassium--but potassium opposes MF--help?!

    Just wondering if this plays out with people with the COMT gene variant since people with it exhibit extreme anxiety and/or anger when methylation begins to increase. I had heard that TMG helped.
  23. S

    Andrew Wakefield links autism to CFS

    My son has a diagnosis of Asperger's along with Sensory Processing Disorder. It's true the classic signs of autism are not bed-ridden fatigue and the classic signs of Me/CFS are not hand flapping and tantrums nor the high intelligence of Asperger's, but my son has had persistent fatigue to the...
  24. S

    Andrew Wakefield links autism to CFS

    Hi @Madison! I actually just introduced myself this morning via thread labeled Mama bear and her cubs. My oldest has Apergers and my youngest had case of PANDAS.
  25. S

    Tired beyond belief B12 and Folate deficiency

    There are several genes that can affect your B-12 levels as well as several medications and disorders. The MTHFR gene is one, so are the MTR and MTRR genes. There is a list of meds that also block the body from absorbing B-12 and folate. Here's a link...
  26. S

    Long time lurker coming out to thank Freddd

    I'm not a long time lurker, just half a year, but the info @Freddd posted has saved my (age 15) son's life literally. And I'm finally putting the pieces together of both of our lives. I haven't actually posted my introduction yet because it's such a complicated story, but I hope to soon. I just...
  27. S

    Please help with nighttime full-body muscle spams/cramps/fits?!

    More links http://ghr.nlm.nih.gov/condition/autosomal-dominant-nocturnal-frontal-lobe-epilepsy The below link is a really good forum tho posts a little old. Many relate having clusters of seizures, then periods without seizures. And one explained a genetic form of it...
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    Please help with nighttime full-body muscle spams/cramps/fits?!

    Here's a few links. http://www.epilepsy.org.au/about-epilepsy/understanding-epilepsy/nocturnal-seizures-during-sleep?noredirect=true www.youtube.com/watch?v=RxvKldtkoPY www.youtube.com/watch?v=3KtSHN4CbSk http://www.epilepsysociety.org.uk/epileptic-seizures#.UqJvrajnaAg I can definitely...
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    Please help with nighttime full-body muscle spams/cramps/fits?!

    Have you ever heard of nocturnal epilepsy or sleep siezures? You should google it. I couldn't find it right off hand but (I think) Ohio University sleep studies department used to have video of people having mild to severe sleep seizures. I used to have a milder form and when my doctor first...
  30. S

    Lyme on my mind

    Thank you for sharing your courage and determination!