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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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. E

    Relation between B vitamins - what can be taken with what?

    @CFS_for_19_years Meant to reply earlier and say thanks for mentioning the PQQ. I’ll put this on my list to research and look at. I want to get everything back on track and under control before trying to add in something I’ve not had before. Thanks for the link to the Melatonin product. I’d...
  2. E

    Relation between B vitamins - what can be taken with what?

    Thanks @CFS_for_19_years. I was taking the B Complex with my breakfast and my other B's with my lunch; well before 2PM. I will try the Niacin at night. I am keen to include Niacin as it helps reduce Copper which I have too much off with the Pyroluria. What is considered a small dose?
  3. E

    Relation between B vitamins - what can be taken with what?

    Thanks @Martial. I am supposed to take B6 as part of the Pyroluria treatment but I only saw increasing levels in the blood and don't believe it was being absorbed. I was taking as both P-5-P and Pyridoxine Hydrochloride but have since read with the 23andme results I have, I shouldn't take...
  4. E

    Relation between B vitamins - what can be taken with what?

    Hopefully this is the correct spot to ask this question. I've searched and not found an answer to this question here already. I've been recommended to take a B Complex supplement but I find that I do not tolerate this well (Thorne B Complex). I'm OK for a day or two but then feel off and don't...
  5. E

    Anyone else with Crohn's or Ulcerative Colitis?

    @fibrodude84 I've been very fortunate to be off any and all antibiotics since Oct/Nov last year. Have done a lot of work on my diet and healed leaky gut.
  6. E

    Is the return of Ulcerative Colitis part of healing under Freddd's protocol?

    Well I've made a few changes since the last post. Don't normally like to do more than one at a time but I noticed an onset of symptoms after taking the Creons so I stopped those. I don't get the rush to the bathroom now that used to occur after taking them. I've also worked to increase my...
  7. E

    Help with B12 confusion

    Thanks @whodathunkit and @DeGenesis for the responses. I'm not sure that I've had any damage. My last "inspection" I was told everything was very healthy and the gastro was very interested in how I'd resolved everything given I'd stopped the medication he insisted I need to be on for life...
  8. E

    Anyone else with Crohn's or Ulcerative Colitis?

    Hi @DeGenesis, I've had a number of antibiotics over the years. I can't remember the name of them all but the side effects were generally as bad or worse than some of the symptoms I was experiencing. Prednisone was commonly prescribed and I ended up on very high doses of this with little...
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    Is the return of Ulcerative Colitis part of healing under Freddd's protocol?

    @Freddd Thanks again for taking the time to provide a detailed response. My dosing is as follows: Morning 1x Solgar, Folate As Metafolin, 800 mcg Between meals/away from Folate 0.5 tsp Now Foods, Potassium Gluconate 15ml Jarrow Formulas, Liquid Carnitine, Lemon-Lime Flavour Lunch 1x Solgar...
  10. E

    Is the return of Ulcerative Colitis part of healing under Freddd's protocol?

    I have a history with Ulcerative Colitis. It first appeared in the late 90's and was then dormant until 2011/2012 when I had a couple of attacks. It then went into remission. I've since had a lot of other health problems that resulted in me coming across this site and starting the @Freddd...
  11. E

    Anyone else with Crohn's or Ulcerative Colitis?

    I have Ulcerative Colitis. First visited me in the mid 90's then went away until 2011/2012 when I was hit again a few times in succession. Had been in remission for a couple of years now and made lots of changes in my diet and life that should have improved my chances of it not returning again...
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    Help with B12 confusion

    @Freddd Thanks again for the response. In the few weeks since I've posted that message, I've noticed a significant increase in my general well being following your core protocol. I stripped everything back to basics and have been slowly increasing my Liquid Carnitine dose and also my Methyl...
  13. E

    Help with B12 confusion

    @Freddd, my serum B12 was 468 pmol/L and climbed to 600 pmol/L; this was prior to starting any B12 supplementation. My ALT is now close to double what it was just a month ago at 46 U/L and is outside the upper limit of the range (5-40). My B6 is being supplemented for my Pyroluria but the...
  14. E

    Help with B12 confusion

    Thanks for replying @Freddd. I've ordered some but will hold off taking any. As per other topic you replied on, I will keep supplements to basics and treat with the quartet. I will wait until I'm firmly back on track before adding any changes in.
  15. E

    Overdone it or detox reaction?

    Thank you for replying @Freddd. I continue to come to the conclusion I've gone at it too hard, too soon. I've since noticed improvements as I've removed what I sussed out being "too much" and stripped back what I've been taking. As I'd already mentioned I first noticed issues and tracked this...
  16. E

    Help with B12 confusion

    Thankyou all for the responses @Valentijn, @xchocoholic, @caledonia, @Martial and @Coolie. Like I say, I was more confused about the recommendation to both avoid and take different forms. Thanks to these responses and stuff I since found I should be OK with taking all forms (confirmed by table...
  17. E

    Overdone it or detox reaction?

    @matters I was taking that Mercola Vitamin C product but have just finished it. I've switched to another product at the moment and that is a lower dose. Whilst Vitamin C is good, too much of it has been shown to reduce the amount of Ceruloplasmin in the body. As I understand it, Copper needs to...
  18. E

    Help with B12 confusion

    Hi, After getting genetic testing done and identifying several mutations I've started supplementing. I've started using @Freddd's protocol as my primary reference and have seen some results although overdid it a bit with 5-MTHF (see other post, lesson learnt). My confusion now comes from...
  19. E

    Overdone it or detox reaction?

    @matters I use this powder as it is easier to take dissolved in a drink; the last thing I need is more pills :-) http://www.iherb.com/Now-Foods-Potassium-Gluconate-100-Pure-Powder-1-lb-454-g/13939#p=1&oos=1&disc=0&lc=en-US&w=potassium&rc=6625&sr=null&ic=1 I'll give it a few more days and see...
  20. E

    Overdone it or detox reaction?

    Thanks for the response @matters. I've not done a Zinc test but it is on my to do list. I have been treating my Pyroluria with Thorne double strength Zinc Picolinate plus I take Thorne Pic-Mins so get extra Zinc from that too. I take B6 as both Coenzyme Pyridoxal-5-Phosphate and Pyridoxine...
  21. E

    Overdone it or detox reaction?

    @Critterina Thanks for the response. I've eased right off the MTHF and now only get a small amount in my B complex capsule. I still feel "off" but it isn't as bad as it was but still not quite right. It's odd that when I was just treating my Pyroluria and asked in another forum about how I...
  22. E

    Overdone it or detox reaction?

    Hi, I'm relatively new to @Freddd's protocol. I'm treating Pyroluria plus I am treating CFS/FMS. I experienced a good reaction to Methyl B12 and had initially started treatment with Thorne Stress B Complex along with some Thorne 5-MTHF. All supplements had been started before finding the...
  23. E

    Where/how can I get Potassium in Australia?

    Thanks for the replies @taniaaust1 and @alex3619. Agree cheaper and much easier to buy from the likes of iHerb even if I can get stuff via script. Waiting on iHerb to ship the order which is currently delayed by one item. No biggy.
  24. E

    Where/how can I get Potassium in Australia?

    Thanks again @heapsreal. I will look for that. I've started using a Sole each morning recently and that is made using Himalayan Red Salt and Celtic Sea Salt. I think it mainly gives Sodium but some Potassium too. Sole made using this article: wellnessmama.com/12158/make-sole/ Salt...
  25. E

    Where/how can I get Potassium in Australia?

    Thanks @heapsreal. I've ordered some of that Potassium Gluconate already and it is currently processing. iHerb have been good with orders in the past so hope it will be here soon although their holiday will impact processing. I've already got a lot of B6 and P-5-P as I'm treating Pyroluria as...
  26. E

    Where/how can I get Potassium in Australia?

    Hi, I've recently started treatment for my Chronic Fatigue. My specialist recommended some medications that are close to Freddd's protocol but hadn't mentioned Potassium as a supplement. I'd like to start taking this and have ordered from iHerb so waiting on delivery. Thought I'd be able to...
  27. E

    Confused with medications and need help please

    I recently got myself tested via 23andme and got the following results: MTHFR Mutations Heterozygous MTHFR 03 P39P MTHFR A1298C Other Mutations Homozygous VDR Taq MAO-A R297R MTRR A66G Heterozygous COMT V158M COMT H62H MTR A2756G MTRR A664A BHMT-02 BHMT-08 AHCY-01 AHCY-19 CBS A360A In...