Posted 10/23/2024 3:59 AM (GMT -5)
Dear friends, thanks for your answers.
Garzie, yes you are right, your points are helpful indeed.
Yes, I wrote to all kinds of labs to check for G6PD testing and the only one that actually provided this test asked for 800 euro for it. Also my LLMD doctor told me that he met only one person who really had it and that person good blue, in his/her lips, fingers etc, it was very obvious. So I have tested myself for a possible G6PD def with taking larger amount of fava bean, broad bean and I did not have anything particular like symptoms etc. So a bit DIY approach but then when I started dapsone, I did not any severe reaction due to G6PD deficiency.
My fault or shortcoming was that I did not take all full Dr H protocol, when Is started with his DDDCT. I actually had to work, did not have all abx and supplements like folinic acid - 5MTHF 15mg, and Leucovorin 25mg - actually I developed anemia taking 100mg Dapsone with taking only 1,3 MG of Folinic acid, and after say 2-3 weeks (starting with 50mg that I could tolerate well) I ended with anemia. I even had shortbreatsness and really my Hemoglobin dropped to 104 from original 130, so I stopped for a month or so. Meanwhile taking 5THMF, iron rich supplemenets and food, I have managed to come back to 130 in about a month.
Now, with almost all abx and quite many supplements (that are available here in the EU), acquiring it with difficulties and larg help of friends, who were very kind to me, I m now on 200mg Dapsone and taking around 200mg of folinic acid (Leuocovorin 50mg, 5 MTHF 150mg) plus Methylene blue around 100-150 mg per day - which are doses slightly below Dr H's recommended dosages, I m doing well in terms of both anemia and methemoglibnemia (still I have to go for proper blood tests in upcoming days), but taking into account only how I feel in terms of fatigue, shortbreathsness, sever tiredness etc - I already now the symptoms - this time it is much better, almost normal. Even Oxygene Meter measruing blood saturation says 86-88, which indicates there is some anemia, and possibly some methemolgibinemia, nothing horrible, compared to before.
Now regarding the effects of double dose Daps, I m having severe herxes, quite strong and tough ones, but actually it does have different dynamic to my previous ways of taking abx. Since abx are taken only twice a day, with breakfast and dinner (Plaq 200mg, Rifa 300mg, Claritro 250mg, Dapsone 100mg, Nystatin 500 000 UI) (I dont have Pyrazinamide, so for the 1st week I took Cefixime 300mg instead) it typically does hit around 4-6 hours and gives herx for few hours, then it gets better. The same in the night, actually it gives pain that occasionaly wakes me up from sleep. But I can see it does hit quite strongly. I have asked Dr H, if it can actually treat persisters (L-forms, round body forms, biofilm clothed etc) and he said that it is does.
I will try to go to High dose, If all my CBC, anemia etc blood test will go well, to see the truth, and if it actually will be of help or will bring me to remission. Dr H also said for bartonella coing. doses of Rifa are to be doubled the last week (High dose.) He also says many useful things in youtube videos.
My experience is that it is best to take it completely and thoroughly as he recommends it. My problem is that I hardly afforded all essential abx and supplements, and still I will not have everything perfectly, but still I can see that it does have powerful effect. Yet I m not sure of remission - I will see. Also it can be pretty tough, so I dont think one can really work or function normally with high dapsone. With doouble dose after some time its a kind of so so possible, depending on duties, but things can go unexpectdly up and down quite strongly. I m trying not to take painkillers, only if its absolutely unbearable. Better i take CBD if really needed.
What Garzie says its true - if its possible you better take it under someone trained under Dr H. That course he provides lasts only 16 hours, but I believe being under a doc who have that trainining and experience - is lessening chances for possible ways of going wrong way.
Also to mention, Dr MR on treatlyme says that since it is a hars protocol, he recommends it to those for whom IV abx has failed. Dapsone itself has several side effects that are similiar to herx, so sometimes its not clear and easy to distinguish whether its herx or daps side effect. I did not fing any endotoxin/neurotoxin tests to check it out. Also it typically goes after few hours, so its not a big deal.
I have been struggling for some years, and I have a hope of remission with it, but who knows, I will see. It has helped to some, but to others not. Also it depends which Co-infectiotns you have. I believe for borrelia only there are more easier and more mild ways to go. For me, having neuro lyme and 3-4 coinfections, it can be the right way, but lets see.
I think if you are doing well perhaps there is no need to take this complex and harsh protocol.
Hopefully this long story is of some help. Good luck and best wishes, B