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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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  1. C

    Nicotine protects against neurodegeneration (activated microglia)

    I just ordered a sublingual form of nicotine called Nicofi...I've been socially smoking when I go out for a year or so, about a pack every 2 weeks maybe, but it aggravates my sinuses and makes me short of breath (I know, duh), but I like the little energy boost it gives me. Well, nicotine gum...
  2. C

    Active B12 Protocol Basics

    Thank you for the updated info. Sadly, since I did the protocol 2 years ago, I cannot remember details of what I took and when and how much. I know I tried to follow the protocol pretty close with the recommended brands, etc, and not leaving anything important out.
  3. C

    Active B12 Protocol Basics

    Sorry about that :(
  4. C

    Active B12 Protocol Basics

    I'm sorry I don't know if there were revisions as I haven't been following it :( That was the latest as of 2011.
  5. C

    Active B12 Protocol Basics

    I'm sorry I don't know why. Try a different web browser. The link is public and it is set to automatically download. It is a Word document.
  6. C

    Active B12 Protocol Basics

    I stopped because I didn't find any improvement...but I wouldn't discourage anyone from giving it a shot either.
  7. C

    Active B12 Protocol Basics

    I'm not on the protocol myself right now (or any particular regimen for that matter). I tried it in 2011 and didn't see results after a few months so I gave up. Hopefully the doc is helpful once you are able to absorb it or maybe a family member could help? Good luck roxie60.
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    Active B12 Protocol Basics

    Looking for Answers, Here is a document I made up for myself a while back when I was trying to consolidate the information and understand it better. I hope this is helpful to you or anyone else. https://dl.dropboxusercontent.com/u/38325428/Freddd Protocol.doc?dl=1 Holly
  9. C

    B-12 - The Hidden Story

    My sleep hasn't seemed to changed. It's still hard for me to go to bed at a normal time and I take sleep aids (see sig). Bed at 2am and up at 11am is typical for me.
  10. C

    B-12 - The Hidden Story

    Not getting any further improvement after 4 months I've been on the protocol since early July. I've gotten maybe 20% improvement and seem to have reached a plateau. If anyone has any suggestions regarding my regimen, it would be greatly appreciated. I have been taking the following...
  11. C

    B-12 - The Hidden Story

    Thank you very much! All the best to you, Freddd for helping everyone.
  12. C

    B-12 - The Hidden Story

    Hi Rich, I forgot and left that out by accident...yes I am taking 1 Folate (Metafolin) 800 mcg with the morning supplement group.
  13. C

    B-12 - The Hidden Story

    Hello everyone, It's been 10 days for me on the protocol, and was wondering if anyone could "critique" my routine. I started off quickly (patience is not one of my virtues). The 1st week the B12 Infusion was left out (just took 1 Jarrow MB12). Also, I just got the Pure Encapsulations...
  14. C

    B-12 - The Hidden Story

    So sorry... I can only re-iterate what illsince1977 said. I'm so sorry for your loss and grateful for your continued help.
  15. C

    B-12 - The Hidden Story

    Thank you for replying Freddd, I appreciate the input. I'm going to give this a shot, fingers crossed!
  16. C

    Is Medicare Part D (RX plan) worth it for PWC?

    I ended up just going with A&B for cost reasons and "not wanting to deal with it" reasons, lol. I can get my most expensive medicine (Pristiq) for free thru Pfizer, and my others are generic so shouldn't be too bad. I really don't want to take any more RX drugs anyways, I've tried a lot, and...
  17. C

    B-12 - The Hidden Story

    Hi everyone, I'm getting ready to place my order for the protocol, including the co-factors (thank you Freddd for putting this all together and helping people!). My question is, are there any antioxidants or supplements to help with potential detox/die-off that you would recommend as well? I'm...
  18. C

    vasoconstriction/vasodilation

    I would like to know the answers to these as well, if anyone out there knows. Otherwise, I may start a regimen of low-dose caffeine because I am now having constant "pre-headache" feelings all the time that are really bothering me. It's like I always have pressure in my head and taking...
  19. C

    xmrv+ and just got back "mini-cytokine" panel fr VIP: need help interpreting results

    Sorry to interrupt, but can regular doctors RX these tests thru Labcorp or whatnot?
  20. C

    Is Medicare Part D (RX plan) worth it for PWC?

    I still have to decide too! I have one month left, argh. The company that represented me for my disability claim, Allsup, will advise me for a fee of $200. I don't know if it's worth that or not. I really need to get on this ASAP....
  21. C

    Low blood volume "attacks"

    Thank you I will Hope. I am waiting for my Nutrigenomics test...prob 2 more weeks there, then I will know better which way to proceed in my next plan of attack. I guess I'm just sick of fighting, ya know?
  22. C

    Dating/relationship advice?

    I hate to say this, but the last 3 relationships I've had have taken soooooo much out of me, mentally, physically, and emotionally. Being this ill, you really have to protect yourself from letting the wrong people into your life, and unfortunately you don't always know they're wrong until it is...
  23. C

    Low blood volume "attacks"

    Thanks for the tips. I guess I feel like if I had hope of a partial recovery that maybe I'd take better care of myself and make sure I got enough water/salt, but I am falling into a mode of self-neglect because I have lost hope. It's been 18 years, I'm over it :( Sorry for the downer post.
  24. C

    Low blood volume "attacks"

    Yeah, I guess you're right. I have just always had a hard time drinking enough water. I just forget or don't think I need to and sometimes don't care to be honest. It's a full time job trying to just deal with this illness and I'm beyond the point where I even care to be honest. I guess...
  25. C

    Low blood volume "attacks"

    Lately I've had 2 episodes (1 coming out of now) where I guess my blood volume becomes too low and I become extremely weak (even more than "normal"), dehydrated, my blood pressure goes down to around 95/60 and my heart starts feeling like it's pounding in my chest. It has been scaring my Mom...
  26. C

    Is Medicare Part D (RX plan) worth it for PWC?

    I did go online and look and tried to compare but got overwhelmed. I'm going to have to look again. Thanks for the tips.
  27. C

    Migraine medicine made me feel slightly better next day

    Hmm, interesting. Do you know if there are any generic/non-expensive ones out there? I also wonder if it there would be unintended side-effects by taking them daily.
  28. C

    Is Medicare Part D (RX plan) worth it for PWC?

    I didn't realize there would be penalties for adding Part D later. I thought that was only Part A&B. Will have to re-read my stuff. I'm not eligible for SSI. I get SSDI and for 1 person I am considered over-income for any other type of assistance. Thank you.
  29. C

    Is Medicare Part D (RX plan) worth it for PWC?

    Thanks for giving me your personal experience...
  30. C

    vasoconstriction/vasodilation

    I just posted a thread about migraine medicine making me feel better in another thread: http://forums.phoenixrising.me/showthread.php?11384-Migraine-medicine-made-me-feel-slightly-better-next-day I wonder if this is related...