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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. I

    Active B12 Protocol Basics

    Hi Tina——I have never heard that B12 injections could give you heart failure. Something is amiss. On another note, I found a whole thread started by Mary in 2011 (I believe) regarding the low blood pressure and a couple of people who had it. They also had low potassium with B12 deficiency...
  2. I

    Active B12 Protocol Basics

    NOW has a 10,000 mcg (10mg) sublingual. I have used that and it has been effective for me. The other brand is Nature’s Way B12 Infusion Methylcobalamin. I have only found that at iherb. It is 1,000 mcg or 1 mg sublingual.
  3. I

    Active B12 Protocol Basics

    thanks Freddd. I just got my copper tests back and I fall mid range. Do you think that is ok?
  4. I

    Active B12 Protocol Basics

    Sorry, I cannot get the link to work. It is the one that is about 51 minutes long.
  5. I

    Active B12 Protocol Basics

    Got that too. I was hoping that the big doses of folate and B12 would help that……so far it hasn’t but I’m hopeful.
  6. I

    Active B12 Protocol Basics

    Hi Tina So interesting. I too had very heavy periods and was also tested for cancer, etc. So many of B12/folate symptoms are explained away—-aging, menopause, anxiety, etc. Thinking back, my legs used to ache so bad at night that I lived on pain relievers. I asked several physicians about...
  7. I

    Active B12 Protocol Basics

    Tina—-you are all over this and that is good! I just wanted to mention that I was also going through menopause (first time) and a lot of my symptoms were being explained away that it was menopause related—-nope, it was low B12 (except the hot flashes). I inject everyday and I’m glad you...
  8. I

    Active B12 Protocol Basics

    @Freddd, I’ve been meaning to ask you about the lithium. Do you feel you have it optimized after this long? Also, when you titrated the lithium, I assume you were trying to find the lowest dose that worked OR were you titrating because of potassium demand? Finally, I noticed a few comments...
  9. I

    Active B12 Protocol Basics

    Yes, it was about every 11/2 hours. Today was better with potassium as I have been using tablets with every meal as my base amount. 3 -4 tablets. As to BP—-mine was high when I was low on potassium.
  10. I

    Active B12 Protocol Basics

    I see that you are having some improvements which is so great. Sounds like acidreflux is better, and the addition of more folate is helping. I had a tough low potassium moment yesterday. All of a sudden intense weakness that almost brought me to my knees. It took at least 30-40 minutes after...
  11. I

    Active B12 Protocol Basics

    Hi Tina——folate does not seem to affect my sleep (when i get some). The thing that does really affect the “lack” of sleep is low B12. Even when I was doing well last time, if I was having a hard time going to sleep, I would put a few sublingual under my tongue and it worked every time. B12 for...
  12. I

    Active B12 Protocol Basics

    Hello Jes, I am so sorry that you have been unable to find something that has worked for you. You are right not everyone has found a solution BUT many have, You are also right that there is a list of B12 deficiency symptoms that get published—-however, I can personally attest to having way...
  13. I

    Active B12 Protocol Basics

    Hi Tina, Every single symptom you listed above is all tied to B12 deficiency (my opinion). I say that because I had ALL those same symptoms. I thought my life was over——-you have to know it isn’t. If you stay the course and aggressively take care of your B12, your life will come back and...
  14. I

    Active B12 Protocol Basics

    I need much more than the what the society promotes. When I try the low doses, my symptoms continue to plague me. Also, Methylcobalamin goes in and out of your system fairly rapidly. Here is what works for me (It is different for everybody). I will also say larger doses penetrate deeper...
  15. I

    Active B12 Protocol Basics

    I take 7.5 mg of folate 4 times a day. The brand I use if Methyl Pro. Yes, it is quite a bit, much more than I originally used. Folate is a big player in all of this,
  16. I

    Active B12 Protocol Basics

    Hi Tina—-is your heart rate still elevated. Mine has been all along—-it is getting a little better. How I calculate mcg to mg is 1,000 mcg is 1 mg. So your Solar is 1.3 mg. The other brands that I mention below are already calculated into mg. I personally take Methyl Pro and bought it in...
  17. I

    Active B12 Protocol Basics

    Hi Tina I have had a pretty good turn the last three days. Let me tell you what has happened to me. I have been at this a month. The turn for the better went something this. Titrating folate higher and higher all the while keeping my B12 high. On Wednesday, I upped my morning dose of folate...
  18. I

    Active B12 Protocol Basics

    Hi Fredd——I wanted to provide you with this information as I think it validates what you have been saying re: Lithium. I heeded your advice and had my doctor order a mineral panel. I don’t have all the results back yet but my Lithium came back at 0. I ordered the Lithium a few weeks ago but...
  19. I

    Active B12 Protocol Basics

    The “D”. Mostly my gut gurgles, and makes snapping sounds pretty much non stop. THAT is new for me. So many weird things crop us when you go through this—-lots of underlying repairing going on I suspect.
  20. I

    Active B12 Protocol Basics

    I read last night on one of these threads of someone who had that. She said it went entirely away when she got her folate high enough. There are a number of people including Freddd who found that folate reduced bloating, edema, etc. It is on Freddd’s list of paradoxical folate symptoms.
  21. I

    Active B12 Protocol Basics

    Hi Tina. I just googled vagus nerve begin affected by B12 deficiency and a ton of information came up. Dr. Jamie appears to be spot on with what I read. I had such bad reflux (or so I thought) the first I’ve and once I got my B12 levels up…it all went away and never came back, even now. I...
  22. I

    Active B12 Protocol Basics

    Hello Freddd, Thank you for responding. I’m having a bit of a problem with “following the symptoms”. I don’t have much in the way of obvious folate deficiency symptoms. I do understand that folate works in all cells. So, I have a dry spot on my lip that I have had for years and that...
  23. I

    Active B12 Protocol Basics

    Hey Tina I was just at my doctor and we talked about all the potassium and peeing all the time. I was worried about salt and a whole host of things. She said, my blood panel isn’t picking up anything. I am having a blood draw tomorrow to check potassium again. We agreed that we will check my...
  24. I

    Active B12 Protocol Basics

    Freddd will likely jump in here Tina. But I too have been reading lots of posts because they can give me some guidance and importantly reassurance. What I found (and read many times on this forum) that trying to address potassium when refeeding is happening is challenging at best. I found an...
  25. I

    Active B12 Protocol Basics

    Hi Tina. I’m glad you are getting more comfortable with potassium. I am currently using about 2,500 mg over the day. I have had a few things improve. I am taking larger doses of folate and seem to be tolerating it better. Yesterday I took 20 mg and today I am at 27 mg and plan to take one...
  26. I

    Managing Potassium Deficiency - Share your experience

    Well, what needs to happen is that he needs to give you reassurance. To tell you that this is psychosomatic, tells me that he doesn’t get it. I just had a discussion with a physician who told me that the doctors are getting a lot of criticism for being “box checkers”——in other words, checking a...
  27. I

    Managing Potassium Deficiency - Share your experience

    Cry a lot——-you need to. This is tough. I cried everyday for 6 weeks the first time and I also cry now. I still get scared by some of the symptoms. My husband remembers some of the first time and he is confident it will turn around BUT when you are the one going through it, it is hard to see...
  28. I

    Managing Potassium Deficiency - Share your experience

    I have tried two different ways. I bury 4 tablets of potassium gluconate in food and eat that just as I crawl into bed. The other way is one teaspoon of potassium gluconate powder which is equal to 350 mg in 8 ounces water, I also try to have a little something in my stomach when I drink that...
  29. I

    Managing Potassium Deficiency - Share your experience

    Hi Tina—- As to my frequency of shots, I did a 10 mg. Methylcobalmin shot everyday. Over time I was able to do every other day BUT it always caught up to me over the long haul. This darn B12 thing is so sneaky. I think I read something from Harvard about how B12 deficiency sneaks up on you...