• 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. L

    B-12 - The Hidden Story

    @drmullin30 , I have my raw data from 23andme. Is there a privacy safe way of checking on these particular genes, that you know of?
  2. L

    B-12 - The Hidden Story

    Thanks, @drmullin30. I have had kidney stones before, which I know are calcium oxalate. Oddly, my 1,25 vitamin D has been elevated even when the 25-OH is low.
  3. L

    B-12 - The Hidden Story

    @drmullin30 , Thank you for the pointers. I am taking magnesium threonate now, particularly to get some magnesium into my brain, and I do believe it is making me feel better. I always take vitamin c, but I will look at the b6 as well. Historically, B6 makes me feel bad, but I am getting a bit...
  4. L

    B-12 - The Hidden Story

    @Freddd, 10 years ago or probably more, your writings about folate, B12 and potassium were the first descriptions of cause and effect that actually fit with my symptoms. It gave a little order to the chaos and methylfolate was one of the first things that ever made me feel any better. Then I...
  5. L

    Autism, Hypermobility Type EDS and ME/CFS

    Hello, I wrote an article about how autism, joint hypermobility, ME/CFS and mast cells could be related. TL;DR: People with hypermobility type EDS have 7.4 times the risk of autism, according to a large Swedish and American study. Researchers have found increased amounts of a cell called a...
  6. L

    Meals when cooking is out of the question

    Nut butters will put weight on and satisfy hunger with no prep. Almond butter & cashew is good.
  7. L

    "Property Brothers" J.D. Scott battling "debilitating illness" for a year - People Magazine

    He says he had a severe infection. Wonder what it was? This sounds like MCAS: "After a round of antibiotics and cutting out wheat, dairy, soy, gluten and sugar from his diet about a month ago, Scott says his condition has improved."
  8. L

    Iron supplements

    Heme iron is well-absorbed. It is the kind found in meat and liver. A brand name of heme iron is Proferrin. Here is an article about Proferrin/heme iron: https://badgut.org/information-centre/product-reviews/proferrin-heme-iron-polypeptide/ I believe Easy Iron may be the same thing as iron...
  9. L

    successful CFS treatment - occult strep infection, my story

    Have you all heard of PANS/PANDAS? PANDAS stands for pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections. PANS stands for pediatric acute neuropsychiatric syndrome. PANDAS is a complication of strep infection. Kids get sick with a range of symptoms...
  10. L

    Odd new symptom freaking me out

    Some people with ME/CFS seem to have an unusual and bad reaction to Vitamin D. I do. I don't get symptoms like yours exactly, but my ME/CFS is much worse overall. There are a number of studies pointing out links to oxidative stress with ME/CFS. Here is one...
  11. L

    How is the video conference with Dr Bolognese structured?

    Following...
  12. L

    My ME is in remission

    @jeff_w and others, I have gotten a clunking sensation right at the base of my skull if I jump up and down, like if I were to do a couple of jumping jacks, for years now. This is not normal, correct? Might this sort of sensation be consistent with CCI and/or AAI?
  13. L

    Blood Flow & ME/CFS

    Hi Hip, Livideo reticularis is found in sepsis. I don't think the mechanism has been determined for certain, but seems to have to do with the general problems with blood flow through the smallest vessels (microcirculation) found in the illness. It is also found in POTS and in fibromyalgia and...
  14. L

    Blood Flow & ME/CFS

    Hi there, I wanted to share a couple of blog posts I wrote about ME/CFS, blood flow and how this might relate to the similarities between sepsis and ME/CFS. The first one is about the type of blood flow you find in capillaries in sepsis. In sepsis, you have some capillaries with normal blood...
  15. L

    Naviaux, the ME/CFS Autism Connection and a Treatment Success - A New Website Opens

    Hello, This is my article. Let me know if you would like me to answer any questions. Thanks :-)
  16. L

    Following Freddd's Protocol. Am I missing anything? Check out SNPs.

    Hi guys, I am doing 855mg l-carnitine Fumarate, 1000mcg MeB12, 1000mcg AdenoB12, and 200mcg MeFolate, and 2x99mg potassium. In the past, both folate and folic have made me very tired. I think the adenoB12 makes me irritable. The very first day I took the whole Freddd combo, I slept like a...
  17. L

    Help with SNPS, +/+ for MAOA, VDR TAQ, BHMT-08

    Sulfur could be a problem. NAC, lipoic acid, and sulfur dioxide make me feel bad. Sulfur dioxide gives me asthma.
  18. L

    Help with SNPS, +/+ for MAOA, VDR TAQ, BHMT-08

    I was diagnosed with CFS at age 16, 18 years ago. Gotten myself a lot better, but far from well. I revisited methylation after reading Amy Yasko's information. I have always had macrocytic anemia. So has my father. We both have food allergies, fatigue, and insomnia, but I am worse. I have...
  19. L

    High MCV, MeFolate makes me depressed, probably not homocysteine

    When I started reading this forum today, I decided that the 23andme is an excellent idea.
  20. L

    High MCV, MeFolate makes me depressed, probably not homocysteine

    Sorry (brain fog). I blood pressure is ranges from 80/50 to 100/60. I'm always cold, but heat makes me feel like passing out. Many foods give me a rapid strong heart beat. Got Raynaud's and I bruise easily.
  21. L

    High MCV, MeFolate makes me depressed, probably not homocysteine

    Also, NAC and s-acetylglutathione make me feel bad. Sulfites cause an asthmatic response.
  22. L

    High MCV, MeFolate makes me depressed, probably not homocysteine

    Hi, New here. One side of my family has fatigue and chronically high MCV. I do, too. MCV will get more normal with a lot of methyl folate and methyl B12. No one has heart disease or stroke, so I'm thinking no elevated homocysteine. However, methylfolate makes me sleepy and depressed, so I...