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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. M

    Just diagnosed with Lyme

    Hi Rossy. Sorry to hear your approach didn't work out for you. But everything i've been learning tells me that when people don't get better, it's because there's a co-infection they're missing and not treating. Have a look at this video, from Dr Richar Horowitz, a Lyme expert in the US...
  2. M

    Just diagnosed with Lyme

    and different combinations work for different people. I plan to experiment for a full year or more finding the right combo and doses. In fact I'm going to do whatever it takes to get my health back. Ridiculously expensive though. Prohibitive for most.
  3. M

    Just diagnosed with Lyme

    Part of my dismay with the mp is that many of the same people are still there, seemingly as unwell as they were when I left the forums several years ago. Perhaps I needed the higher doses of antibiotics and different kinds, especially doxy, but they withdrew their support for people still using...
  4. M

    Just diagnosed with Lyme

    I believe there's some sort of stealth pathogen at work in almost all chronic illnesses. Yes I'm aware the MP team no longer recommend antibiotics but the olmesartan alone does almost nothing for me any more. I started it again for a while recently and no difference, no obvious ip.
  5. M

    Just diagnosed with Lyme

    Australian Biologics test for it and a number of co-infections. I also have mycoplasma. It's really expensive for all the tests though so I started with urine for borrelia (Lyme) which came back positive, and bloods for mycoplasma. I'm not going to get any more tests as we all agree given my...
  6. M

    herbal protocols for Lyme -- effective?

    This s not at all what i've been learning. A lo of people do really well on herbs, as have I.
  7. M

    Just diagnosed with Lyme

    Hi all, Just a few days ago I found out I have Lyme disease. I'm an Australian who up until last year had never been out of the country. I grew up in South Australia and travelled to the ACT to see family semi-regularly, and to the South Coast of NSW. I spent two years in Darwin when I was...
  8. M

    One month into Valtrex, starting out on Valcyte

    It can be very confusing dealing with symptoms that doctors don't understand. I would suggest contacting Dr Martin Lerner himself and spending some time reading his protocol. He responded to me when I emailed him some time ago.
  9. M

    One month into Valtrex, starting out on Valcyte

    Hi, no I stopped the antiviral protocol some time ago now. I'm not sure what to make of your symptoms i'm afraid as I didn't have anything similar happen to me. Consider posting your experience with more detail in another thread and see what others say. What were your symptoms when you started...
  10. M

    Getting a lot of help with IBS symptoms with Toxaprevent

    Thanks for that, might be able to save some $$$ :)
  11. M

    Getting a lot of help with IBS symptoms with Toxaprevent

    Hi all, I'm well into my methylation protocol and recently started seeing a naturopath with experience in methylation. She recommended a product called Toxaprevent for my IBS/bowel issues and I have to say, it's a game changer. It completely resolved my issues and does so by binding to...
  12. M

    One month into Valtrex, starting out on Valcyte

    Hi all. Been a while. I stopped taking antivirals perhaps a year ago. I felt like I had come as far as it would take me and I was concerned about some of the impacts on my liver function, as well as the costs. I was also flying blind much of the time, it was an experiment for me. The early...
  13. M

    Methylcobalamin Inhalation Therapy

    Is anyone still inhaling B12? Just wondering about results, experiences etc. I realized recently that B12 might be damaged by the heat produced by the vape. B12 can break down at high enough temperatures although B12 is said to be stable when exposed to heat but there is a point at which it...
  14. M

    Acyclovir for EBV - Quit or Push Through?

    Hey. Thought i'd add a little about my experience with antivirals. You can search for posts from me here to see what I've written when I was taking them. Basically i'm under the impression that a herxheimer reaction (basically an increase in symptoms similar to what you described) should occur...
  15. M

    Swapped LCF for ALCAR...woah!

    Freddd has commented that in his trials/observations, about 10% of people need ALCAR rather than LCF. Not sure he offered a reason for it, perhaps something to do with genetics. I had to back off of it because it was interfering with my sleep. I'll try some super small doses or maybe just come...
  16. M

    Swapped LCF for ALCAR...woah!

    Looks like im one of the 10% that needs ALCAR as opposed to LCF. Took my first dose of 500mg yesterday about 1pm and felt wired, sweaty and had trouble sleeping. Took two doses today with my last at 11. Feeling much more alert, a little jittery and anxious but good. LCF did nothing for me at 1000mg.
  17. M

    Methylcobalamin Inhalation Therapy

    Yeah I kind-of impulse bought my vape and now I'm hoping I'll use it! I think i will but need to experiment. Otherwise I'll sell it on eBay or something. Did you know you can hire nebulisers from pharmacies for a small fee? Google it or ring some pharmacies near you.
  18. M

    Methylcobalamin Inhalation Therapy

    Oh yeah, the olfactory nerve. I read that as well.
  19. M

    Methylcobalamin Inhalation Therapy

    Hi @ahmo, yes I'm aware and i'm part of the group buy. Looking forward to getting the gear! Have you tried vaping? From your posts it looks like you weren't able to go ahead with it. I'm not sure if a nasal spray will be much more effective than sublingual though, it's all mucosa right? I guess...
  20. M

    Methylcobalamin Inhalation Therapy

    I bought a vape and some juice and some of the b12 from Bio Alternatives pure water linked in this thread. It's 1mg per ml or thereabouts. I'm not convinced from my first attempt. @AlmostEasy noted too that this brand of liquid mb12 isn't strong enough to get much of an effect. I noticed an...
  21. M

    Progress report

    Thought i'd post a quick update report. I'm about three months into methylation and i'm starting to feel really good. I worked my first full week last week in about 7/8 years and still had energy for the weekend. I still get tired mind-you but it's manageable and not debilitating. Socially I...
  22. M

    Pyroluria treatment with methylation

    Thanks @ahmo. I've seen you reference your self-testing method several times. Do you have a resource where I can learn more about how to do it? I have searched on google and what I've found i'm not sure would be very effective. I once had a GP who decided to do what he called a "quack test" on...
  23. M

    Pyroluria treatment with methylation

    Hi all, I was diagnosed with pyroluria last week and so have commenced supplementing with zinc and B6. My doctor recommended I get a "primer pyrrole" capsule for treatment, but as I have the supplements individually i'm going to use those. I have a couple of questions I hope someone with...
  24. M

    Cannabis and tobacco use with MTHFR

    I don't think this research was government funded, it was conducted at the Icahn School of Medicine. I also feel better when using it, and i've used so much for so long that it's probably too late to worry about. It was a major crutch for me during the peak of my CFS/ME. However, i'm also...
  25. M

    Cannabis and tobacco use with MTHFR

    Here's some more research relating to cannabis use and methylation. This is new research that shows deleterious generational changes in methylation patterns in the offspring of parents who used cannabis. Third and fourth generation offspring also show some changes...
  26. M

    Feeling stuck, sick and need some help please

    Wow...five weeks only off work? I've taken about 8 weeks since I returned to work in May last year, but I have poor sleep and daily fatigue. I guess i'm worse off than I thought. But then I didn't work for two years due to struggling to manage going in to work every day, in the hope I would...
  27. M

    Feeling stuck, sick and need some help please

    Thank you for your input. I guess that was my feeling too, that I need more methylfolate, but my first experiment made me very uncomfortable and I find a lot of the information posted around here, and also my reaction to methylfolate, to be somewhat contradictory and confusing. Gee it would be...
  28. M

    Feeling stuck, sick and need some help please

    Thanks ahmo. I forgot to tag @whodathunk it, but very keen to hear any ideas you may have.
  29. M

    Feeling stuck, sick and need some help please

    I found this post relating to acne and the response is by Freddd: Inester7: Hey how did you resolve the acne just by increasing ab12???? and how much are you taking of all the supplements. Pls help!! I am doing great but I am struggling with very painful cyst acne big red and painful, that I...