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bobby pellegrini
ParticipantThanks Mike for prompt response. Congratulations on NOT needing a transfusion for past 3 months!! Looking up Dexamethasone, see it is a corticosteroid that prevents the release of substances in the body that cause inflammation. So this helps to enhance or trigger a Luspatercept positive result. Does you Dr. definitely believe that the steroid is the key for Luspatercept working? I would think that the Dr. you changed to had had success using the steroid. Wished there was a writeup about this somewhere for can show my Dr. Was this new Dr. at your Center of Excellence or a different CoE?
Your info is so useful for me!
ParticipantI have couple questions: (1) what steroid did your doctor use; (2) are you still taking it; and (3) how have your counts done since beginning taking the steroid. Your responses would be greatly appreciated. The best to you!
ParticipantHi Amy. What medications if any Vidaza are your husband taking. You had mentioned his increasing hemoglobin counts since spring and that he started taking Tumeric then. What do you attribute the increase of his hemoglobin to? Thank you!
October 16, 2019 at 8:03 pm in reply to: Low risk MDS patients who opt for no medical/drug treatments #49180ParticipantMargaret what tumeric/curcumin daily total dose mgs & frequency is he taking? Consider supplementing quercetin to work with curcumin to help it absorb and also extracts iron.
October 10, 2019 at 5:32 pm in reply to: Low risk MDS patients who opt for no medical/drug treatments #49167ParticipantSomenath – Can you post more details on those 2 cases particularly protocols used to maintain BTF.
ParticipantAsalin what supplement changes did you make and the protocol you used? Thank you!
ParticipantWhat were the cases to be BTF? What did you do?
October 8, 2019 at 6:24 am in reply to: Anyone experience drastic number increases like these?? #49149ParticipantThat is astonishing that in short time with nutrition numbers would increase that much.What consisted of your diet and can you provide links to couple sites you used? Are you taking any natural supplements?
ParticipantKathy that is very good news that papaya leaf extract and not needing blood. How much did your hemoglobin increase? How did you hear of PLE? What dosage & frequency are you taking it. Have you considered taking Tumeric vs the creme form. I posted earlier some info on Tumeric with couple links. Hope it will help you.
ParticipantAmy other supps …. https://hemochromatosishelp.com/hemochromatosis-supplements/. Also Quercetin will pull iron from tissues.
ParticipantKathy you may want to read my reply to Amy on tumeric and products.
ParticipantThank you Amy for your response. I will reply / ask question as follows:
1. Now brand was recommended by Hotze or did you recommend another brand? What I noticed with Now is there is NO Piperine/Biopene (black pepper) or BCM-95 included which increase bioavailability for absorption since Tumeric w/o id poorly absorbed. Also NOW is not 95% standardized curcuminoids which is you want the highest amount in Tumeric. You cannot determine how much is in the NOW product. Look at these 2 sites for information:Best Turmeric / Curcumin-Bioperine Supplements (2019 Update)
My brother is taking Terry Naturally Curamed BCM-95 for now see how it does.
2. I would want to know how much of the 2g he takes/day is curcuminoid? (see 1 above)
3. Since he has not had a transfusion I gather his Hemoglobin has been 8+? How have you been able to keep it up so not to have to get transfusions?
4. Did you take any other supplements to block iron absorption from food as there are some. Transfusion by far provides the most iron. Could you check that article is see if dosages were mentioned as that’s what I cannot find information on right dosage amount that will effective remove iron stores in tissues. That would help. Did you Dr. say how much Tumeric can be taken that is safe, I think its up to 8 grams.Look forward to hearing back.
ParticipantHi Lynne. How much have your levels dropped? How about side effects? Thank you!
ParticipantI am so sorry as I intended my numeric question to Amy. Amy we look forward to your response. Thank you.
ParticipantThanks Michael for responding. Did you consider / or take Tumeric which can naturally decrease iron. Thank you.
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