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Dr H Dapsone protocol

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Posted 9/6/2024 1:27 PM (GMT -5)
yep as above - only to be attempted with a Dr H trained provider due to the significant risks attached

from what i have read in his books - the degree of methemoglobinemia person gets is highly individual - varying from one person to the next and requiring the doses or the supporting meds like methyl folate etc to be adjusted to suit - the above doses are just a guideline - hence the need for weekly monitoring and a suitably trained provider
Posted 9/8/2024 2:45 PM (GMT -5)
Dear Lymie,

thank you very much for your kind concern. Its allways good to be reminded certain aspects of the protocol. What you are writing is sound, and sofar I have been on only 100mg of Dapsone and still I had a drop of hemoglobin (116), with pulse oxymeter showing 92, and still checking out for possible lab tests for tracking a methemoglobinemia (seems like un-available in my country in commercial labs), at the same trying to get Leucovorin and Pyrazimanide from India or places where it is somehow available. Besides that and higher doses of MB (I can afford 100mg per day) I guess I m more or less equiped to try 200mg Daps at first and see what it will. I m aware of weekly CBC etc testing. In any case I know symptoms of anemia and methemoglibenemia getting severe (blue lips, difficulties to breath/shortbreathsness, fatigue etc) so I hope I will not damage myself, even though here I do not hope for a qualified LLMD regarding Dr H double and high dose Daps protocol. Once again many thanks and best wishes, B
Posted 9/9/2024 2:00 PM (GMT -5)
Dear friends, probably due to lack of leucovorin, my hemoglobin dropped to 104 (I did a CBC today). Dr H is saying in his paper that for double dose and higher hemoglobin has to be no less than 120. I think I cannot continue with Dapsone (even 100mg daily), because of gradual decrease of hemoglobin, in spite of 60mg of L-methyl folate per day. Or perhaps due to not enough vitamin C (taking around 1g) or iron supplementation (30mg per day) or I dont know why there is a gradual decrease of hemoglobin, hematokrit and erytrocyts going down month by month...
Posted 9/9/2024 2:12 PM (GMT -5)
its tough to figure out the cause

if Dr H gives a guideline to stay above - then i would go with that

however - i do note that dapsone is still used for leprosy at 100mg a day standard dose long term ( 12 months or more) - and no mention of special measures in the drug dosing / precautions leaflet - other than G6PD test beforehand

did you do that test?
if no - dapsone will drive anaemia which could well show us as falling haemoglobin
Posted 9/9/2024 2:24 PM (GMT -5)
The bigger problem that I had with anti-folates was low folate and high homocysteine. Have you had your homocysteine checked?

The low hemoglobin and erythrocytes could also be bartonella attacking the red blood cells. Usually when bartonella would flare up, my blood tests would show high B6 and high bilirubin. Often I didn't need the blood test because I could tell it was bartonella just from the dark urine and the smell. If this is the case, it might be useful to focus on bartonella first, rather then trying to treat everything at once.

My difficulty tolerating anti-folates is why I'm using nucleoside analogues rather than dapsone. The downside of this alternative is it tends to be much more pro-inflammatory than dapsone, and you'll need something else for bartonella, since unlike borrelia, bartonella isn't particularly susceptible to nucleoside analogues.
Posted 9/10/2024 3:29 AM (GMT -5)
Dear Garzie, and Quinn, thanks for your answers.

Yes, you both might be right. It can be bartonella rising, because I dropped rifampicin for some weeks (due to having pain after taking it). Or it can eventually by G6PD deficit, but this anemia has developed slowly within almost 2 month. Good news that I have managed to communicate and clarify directly with Dr.H, who kindly confirmed that in his protocol both Leucovorin 100mg once a day and L-Methylofate 60 mg two times a day are to be taken - I only took L-methylofalate 60mg once a day - so no wonder that anemia has gradually set in. He further direct me to his paper (link posted in this thread too) for details. So I m happy that there is a possibility to communicate and clarify directly with Him, which makes the whole thing again different and more accessible (He also allowed my LLMD to contact him). So i d like say thank you very much also to Lymie. Now I need to to tackle and resolve anemia and increasing Hemoglobin perhaps I will be able to restart dapsone protocol in the future, but also with Leucovorin at recommended dosage. Best wishes, good luck to all, B
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