ummm...changing my mind again about the Dapsone.
I googled it - ie deaths...etc. It's bad. Not a lot of reported deaths but still some ...and some ugly/scarey photos of bad reactions.
Skin lesions...similar to what you see for SJS.
Darparim doesn't have the same risks...so maybe just no dapsone.
I just showed my husband some pictures on Dapsone sites and he told me not to take it.
Then he said "I don't want to see those pictures" lol.
You start mixing and matching Dapsone with other drugs and antibiotics, most likely increases your chances to hypersensitivity syndrome. But from my understanding and reading some of the studies, it's still rare and mostly likely from being on Dapsone a long time, as well as like I said, mixing it with multiple drugs.
Even if Dapsone doesn't put you in remission Girlie, look at it as an important stepping stone in your treatment. Dapsone helped me tremendously, both with neuro lyme and getting deep into the tissue to target spirochetes other drugs didn't do much for me. I saw both my spine and sciatica symptoms disappear after being on Dapsone. As well as taking Disulfiram solo down the line... These persister drugs have helped a lot of patients from what I've read, me being one of them...
I just worry about
when Dr. J and Dr. H start mixing and matching them with other drugs, especially when a drug like Dapsone has severe side effects. Personally, I wouldn't be on Dapsone no longer than month, but that's just me. Very toxic drug, at least it makes me feel that way.
But hey, I would listen to Dr. J and Dr. H, they're the leading LLMDs.
10 days of bactrim messed me up for my whole life ! I think u thank the stars for your hubby....its not worth it ...my friend still hasnt recovered from her dapsone incident
I'm curious bluelyme, what do you mean by that? I know some of the fluoroquinolone antibiotics can put damage to your tendons and nerves, but with time, I'm sure your body could repair itself.
I know when I take Bactrim, it made my arthritis worse, brought out sore back pain in some areas. It's a very high potent sulfamethoxazol drug, aka sulfur. My understanding is that sulfur is a drying agent, if you ever smelt the stuff, it just smells like it would dry a damp cave out, lol... Most likely why it causes pain for me in my joints, because it removes the lubrication... I'm wondering if that did that for you???
When I take Bactrim now, after taking many of the persister cell drugs, which I suspect dug deep and killed off a lot of the deep spirochetes hiding, especially disulfiram after looking at the half life of that drug... I no longer get joint pain taking this drug, however, my back still gets sore.
I also think certain antibiotics and drugs, especially something like disulfiram wakes up dormant cells... What I mean is, it may seem like an antibiotic did permanent damage to your body, but it may have woken up dormant cells and you may feel worse, because it reactivates your immune system which starts targeting the active spirochetes again, in result inflammation may flare up again, as well as fatigue and other symptoms...
As the old saying with lyme patients, you'll feel worse before you get better. This may also relate to these new persister cell drugs like disulfiram, maybe even dapsone too, which may wake up dormant cells and make you feel worse. As time progresses with treatment you should feel better. Doing detox methods to flush out the herx toxins and antibiotics that build up over time in your body is a must.
By the way, Bactrim was also labeled a persister cell drug on the John Hopkins list. Not surprising, since there was a lot of talk over in Europe about
the Gasser protocol helped some patients reach remission. It consisted of Bactrim paired up with Roxithromycin in super high dosages, almost intolerable. I tried it once and I've tolerated a lot of drugs, I have no clue how anyone could function in their life doing roxithromycin 300 mg and trimethoprim/sulphamethoxazole 320 mg/1600 mg twice daily... I guess if you have someone to cook your food, lay on the couch all day like a vegetable.
Anyways, I could see the roxy and bactrim even working at low dosage considering roxy crosse the blood brain barrier, I'm sure this combo could still help some, but the protocol is pretty much dead in the states since they don't make roxithromycin here in the states...
I really hope this dapsone/daraprim protocol helps you Girlie... I would definitely add in some Stevia liquid from a Stevia tincture in collaboration with the xylitol/lactoferrin.
Post Edited (Charlie55) : 10/17/2018 6:05:38 AM (GMT-6)