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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. L

    90% cured from bed bound with Histrelief / Histame / Daosin

    I have tried Histame without much response. I wonder if it is dose related. Do you take a high dose or just what is recommended on bottle? I have a very high histamine response and am also taking drops from an allergist who uses serial titration to determine the right dose for me. I believe it...
  2. L

    B-12 - The Hidden Story

    Has anyone tried the B12 or methylfolate from Ben Lynch's on-line store called Seeking Health. I have listened to his talk on MTHFR and looked at his website, He seems to really get it. Anyone have any experience with him? He is not taking new clients unfortunately. Lucy
  3. L

    B-12 - The Hidden Story

    EastWest, Thanks for the encouragement. I will give it another try. How high did you get your folate up? My initial response to Deplin was at 7 mg or it might have been 15mg, but then it stopped working after one week. My psychiatric prescriber thinks i need to get the folate way up, but I dont...
  4. L

    Active B12 Protocol Basics

    I think I would take breaks, then try it again. The effect was almost instantaneous, like w my food sensitivities so Iwonder if that would be methylation happening so quickly. I just tried it again today after a long break and had a similar response. BTW I love your quote. It is so necessary...
  5. L

    Active B12 Protocol Basics

    Hello I would like to join this conversation about B12. I have been dealing with so many symptoms over years, including fatigue, insomnia, memory loss, difficulty concentrating etc that I have not paid a lot of attention to this gradually growing and spreading pain that sounds like a B12...
  6. L

    B-12 - The Hidden Story

    Hi Cruz and others, I would like to join this conversation about B12 deficiency and neuropathies. I have been dealing with so many symptoms over years, including fatigue, insomnia, memory loss, difficulty concentrating etc that I have not paid a lot of attention to this gradually growing and...
  7. L

    Richvank not as active in forums for a few weeks

    Thank you for letting us know. I deeply appreciate your care and attention to detail with us. I Hope that your endeavors are fun and successful! Safe Travels. ON another note, I have had my results from the Genova Metabolic Analysis Profile for a week or so and want to post them for you and...
  8. L

    Simplified Methylation Protocol Revised as of Today

    I dissolve my folinic acid in water in a tiny glass bottle. Then i can easily titrate it. I hope that is OK, Rich what do you think? It feels potent when I take it. My body loves it. Lucy
  9. L

    Simplified Methylation Protocol Revised as of Today

    Rich and Fred Rich, I was interested that you said you suspected that Fred has the rare MTHFS variant. The only genetic testing I did was the 677t which showed I was homozygous for the MTHF gene. I have it double. Is that the same as MTHFS? If so, I wonder if you have considered getting tested...
  10. L

    B-12 - The Hidden Story

    Does anyone have a reliable compounding pharmacy that could supply me with B12 sublingual and injectable? I started the Jarrow lozenges and want to rule out the filler ingredients as the triggers for the weird feeling I get from the B12. On a related note it is hard to imagine that the slight...
  11. L

    B-12 - The Hidden Story

    DrD Thanks for the response about sorbitol etc. They tend to be hard on my stomach. What is the name of Freds compounding pharmacy? Lucy
  12. L

    B-12 - The Hidden Story

    Fredd, Can you refer me to a safe and reliable source of injectable B. I am going to try methyl first and would like to get it mail order? Lucy
  13. L

    B-12 - The Hidden Story

    Rich, Fredd, anyone, I accidentally order a DibencozideB12 that contains 400mcg of folic acid. Is this contraindicated if I am on the SMP? If so, darn it. It is hard to find that form without added Folic Acid. Lucy
  14. L

    Simplified Methylation Protocol Revised as of Today

    harrycat, I am on the protocol and not experiencing any changes in general. Have only been on a few weeks and think I need to fiddle with the B12 to get it right. . . .I hope that makes a difference eventually. It is so hard to differentiate detox from deficiency from sensitivity. I have many...
  15. L

    B-12 - The Hidden Story

    SAsha Are you taking the Mg oil topically because cannot tolerate it internally? What kind of oil do you use? Lucy
  16. L

    90% cured from bed bound with Histrelief / Histame / Daosin

    Sandra, Thank you. Yes it was a pleasure. Tomatoes are in season now and I am enjoying them as well. I bought a small package, not knowing of they wld work but I am going to reorder a big box. I think they make a difference. Yes to the small pleasures.
  17. L

    90% cured from bed bound with Histrelief / Histame / Daosin

    Histame works for foods that have naturally occuring histamine in them so I would not expect it to work with gluten. It says on the box that it does not work with immune based food allergies such as Igg or Ige. Who knows though, we have such complex responses to things. I had a bit of a beer...
  18. L

    90% cured from bed bound with Histrelief / Histame / Daosin

    Sanrda I believe it. I have had many paradoxical reactions to supplements and medications. We are so complex. I will be interested to hear from the experts. I did try Histame last night and I believe I had a slight reduction of pain, not sure. Lucy
  19. L

    Simplified Methylation Protocol Revised as of Today

    I have read these posts with interest. Since being on the SMP - about 2 weeks - with some extra c, d, magnesium, potassium and fish oil things are looking up. My neck (which has never improved in almost 20 years) is consistently the best it's ever been. I'm amazed each day I wake up that it's...
  20. L

    Methylation protocol and glutathione

    Yes I ordered P5P Not sure I understand the second part of answer . Maybe you could slow it down and dumb it down a little. You are saying that with a fast saturation the start up reaction drops off more quickly. And fast saturation means starting at a higher dosage? did I get that right?
  21. L

    Methylation protocol and glutathione

    No, fruit is OK So that unpleasant rev may be a start up sensation that will subside over time? How much time should i give it before deciding that it is not beneficial if I am not getting any other benefits? I have ordered the other forms recommended and will try them. You suggest taking...
  22. L

    Simplified Methylation Protocol Revised as of Today

    My experience w supplements is that i generrally respond in seconds, minutes, hours or days if i have a good response. Rarely has my initial response improved over weeks or months. When I tried Deplin a few months ago I had am immediate dramatic response that then waned. I am thinking that...
  23. L

    B-12 - The Hidden Story

    Fredd I so appreciate the time energy and effort you have put into experimenting with yourself and sharing your results with us. You have been very diligent in your research. I would like to benefit from all your care. I am a healthcare provider and have access through a distributor to the...
  24. L

    B-12 - The Hidden Story

    I need some help choosing a different form of B12. The Hydroxy tablets from Holistc health are not sitting well with me. I found Enzymatic Therapy B12 from my wholesale place but it is called Infusion Chew. Is that the one you are referring to? Ther directions are to chew it but it could go...
  25. L

    Methylation protocol and glutathione

    how to assess what kind of B12 will be best for me I have an immediate, mildly unpleasant response to the Hydroxy B12. I accidently ordered the sublingual lozenge rather than the drops from Holistic Health. So i am wondering if it might be the fillers or the sorbitol. So I could try the...
  26. L

    Kangen Water

    I am very intrigued with this idea. Anyone have some ideas of how to check out if alkalized or negatively charger water makes a difference for me w chronic inflammation? I have good well water and don't think I need filtration. I live in a semi rural area without a lot of stores that might offer...
  27. L

    Kangen Water

    Dufresne Can you tell us what machine you purchased
  28. L

    90% cured from bed bound with Histrelief / Histame / Daosin

    Does anyone know what test measures the diamon oxidase level? I may fit the bill for histamine intolerance which seems to be getting more intense on the SMP Protocol.
  29. L

    Do B12 and Folate increase Histamine?

    I have had a high histamine response all my life. Insect bites are especially painful and bothersome. I also have extremely high food sensitivities. Two doctors who treat many people with food sensitivity have been shocked at my levels. On both skin and RAST test. I am noticing that, on the...
  30. L

    Study: Pancreatin inhibits Folic Acid

    I am wondering about the pancreatic enzymes and folate supplementation issue. I don't see any further discussion of it on the forum. It seems important for all of us who are taking methylfolate and folinic acid as well as enzymes. I imagine many of us do. Any further information about this. Will...