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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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Hey Hey Hey, Freddd,
I know you split your B multi vit up in two does. I just have one during the middle of the day. And I did not start my B multi vit until 3-4 weeks into the protocol. I think that is why I got depleted and noticed a difference.
HI Place,
You know, I take extra b2 also. I hadn't mentioned it specifically since it is part of fine tuning and personally, I never noticed much difference based on how much b2 I was taking but rather focused on a good balance of B-vitamins. I'm glad to hear about it. Also, you have expanded my view of potassium and may have hit the reason I have been feeling worse while having more low potassium spasm episodes. You identified to me some other signals, again thyankyou.
Cure- There are two protocol's 1) Rich's 2) Freddd's. Both are similar but some people do better on one or the other. What is best for any given person? Genetics? Other factors otherwise unknown?. Either way you just have to be your own expert. It has taken me several months to learn.. well... not much... but enough to make progress.
Roxie- The potassium is Now brand.. I don't think it matters much as most brands are effective. The B2 is Country Life- I can't have any yeast in my B's or it will increase my symptoms (not in a herx or improving way) of Fibro. I get really sick.
Hi Guys,
Could you please advise which B2 you're taking? (Sounds like could help to straighten some of my annoying personality traits and make it easier on my hubby). Do you guys take manganese as well? There are posts on the "B2- I love" you saying that you should. I'm trying to figure out what to order for Fred's protocol and the more I read on the forum, the more confused I become. Makes a bad headache even worse. I don't mean to complain. I'm soooo thankful for all the info that everyone is sharing and Fred, you're amazing. Reading your story, made me feel rediculous feeling sorry for myself. Just really don't know where to start and I'd like to start fast, but afraid to deplete something by mistake or trigger too much of a detox which seems to be a normal thing. And I really would like to avoid making things unnecessarily worse.
fred (& Rich in case you're reading this): I was hoping to get my GP to agree to order some tests at the ELN in the Netherlands (since that's where I live) in order to figure out what it is that I would need to get started on. Could you please advise which tests to take? (And what rationale to give for having these tests for that mater?) I was thinking it was only the methylation tests at 1st, but saw Marlene's results and what she did seems to be a lot more extensive. Would you be willing to read those and clarify (interpret I mean)?
I started realizing just 5 weeks ago that what I'm experiencing is probably CSF. Haven't been able to find a doctor who understands much, did manage to find one who confirmed that it must be CFS since they couldn't find anything else. I was prescribed B12 (hydroxy) which seems to help a tiny bit and also l-carnitine (sigma tau) which made me hyperactive and restless like I'm on caffeine. So I lowered the dose for now. Does this mean that I probably needed it, do you think? Now I'm reading however that I could get more of a detox if I start the methyl and adenosyl B12. Does this mean that it's better to stop the hydroxy?
I'm convinced that my symptoms are caused by a latent EBV infection, so was planning to start antivirals initially and decided to prep with vitamins, etc. to support better immunity, then read Rich's intake and yours and decided to try the B12 protocol and see what happens. After I saw the bigger picture, I thought I might try without the antivirals at first, since there is probably a larger problem at the base of things. The more I'd like to start with something, the more I drown in this sea of information though. I know I'm not the only one and that I'm lucky with you guys already having gone through so much. Still frustrated though and would really appreciate some advice on the starting point.
Thanks!
Hi Cureminded,
The mb12 and adb12 with metafolin is the place to start, get those established and balanced with potassium, then a very caredful titration with the carnitine to control the strong reaction. The "detox" so-called is nothong of the sort. It is almost always plunging potassium becasue the supplemnts are working and then folate insufficiency. The bigger the reqaction a person has to these things the more deficient thay are.
I don't think the tests are very helpful becasue all a lot of them do is show you any of hundreds of problems caused by the deficiencies and lead to incorrect conclusion. Chasing transient effects of deficiency is like chasing fairies. better to just remove the deficiency and 90% corrects, then yuoiu chase down what doesn't respond. That works much better.
Hi Fred,
Sorry, just realized that the basics thread needs to stay short. Deleted my question from that thread and posted it below:
I am puzzled by the fact that no multivitamin is included in the protocol. My Solgar V2000 has just run out and I was planning on ordering most of the stuff for your protocol. (I already take zinc, selenium, vitamin C, etc.)
Is it not beneficial in your opinion to take a multi? One without folacin I guess. Or is it that there are other agents that you are trying to avoid?
With regards to the fishoils: wouldn't it be better to take 3-6-9 (from solgar e.g.) to make sure that there's enough of these omegas as well?
Also I was wondering if you have any advice on how to deal with taking so many tablets? I try to drink a lot to fight dehydration, since I have a feeling that a lot of water is needed to process all the supplements and I get really thirsty. But I still sometimes get quite nauseous after taking a lot of pills at once.
Thanks!
Hummm.... I was just looking potassium and saw the various versions. I almost think each supplement needs its own thread. I was taking citrate and I just started taking aspartate. As I looked on other forums they tend to favor the Gluconate. I will try that next!
I got this from Live strong website:
Potassium supplements come in several different salt forms, such as chloride, citrate, gluconate, bicarbonate, aspartate and orotate. The type in your supplement may vary, but they are all functional in your system. If you take potassium aspartate, ensure that you do not go over your recommended dietary allowance. As a healthy adult, you need 4,700 mg of potassium daily, according to the Linus Pauling Institute.
I bought two bottles of it, what a waste. Guess i should have looked at the ingredients but i assumed a supplement called potassium's main ingredient would be potassium.
Is it not beneficial in your opinion to take a multi? One without folacin I guess. Or is it that there are other agents that you are trying to avoid?
I take a b-complex and a Calcium, magnesium, zinc and trace mineral supplement plus a fee separates. I have never found a suitable multi vitamin as to types, spurces or whatever. I take fish oil A & D, not synthetics. I take an 8 factor E. Nobody puts that in a multi. If I took a multi with 30 IU of DL-alpha I would still need a good vitamin e - 8 favctor. if I took a multu I would need 10 b-vits separates. And often unwanted things like NAC are slipped into a lot of multi items. iron in a multi blocks the b12 and E from absorbtion. Etc. A decent multi requires often 6 large capsules twice a day to get the needed amounts and it would still need another 20 or so separates with each meal. The multi minerals for instance are 3 maximum size caplets plus I take an addtional magnesium plus selnium and chormium. To get that does will still require 3 large caplets. I talke 6 large fishoil capsules. I take 12 grams of C a day. I take 24 or so potassium tablets daily. Sure, if I could get all the stuff in the multis, it might require a 20 caplet dose twice a day for a full multi vitamin and mineral and oil supplements. I'm also always experiementing, adding, subtracting things to see waht the differences are. A multi makes that near impossible. In a multi I would never have found paradoxcical folate deficiency or the effects of potassium and so half the people here would be suffering "detox" for years and years instead of quickly correctable induced deficiencies or whatever.