Charlie-It's a lot more than a few people have failed on Dapsone. At least a year ago there simply wasn't enough data for a lot of dr's to feel safe rx'ing it. It can be VERY dangerous.
jrspf - that's horrible. I read something about a Dapsone sensitivity syndrome. I wonder if that's what the danger is.
I don't think it's common though.
Do you know if the others' are as bad? Daraprim, Pyrazinamide...?
There's no safe drug treating chronic illness, whether you're talking about
Leprosy, Tuberculosis, AIDs, or Cancer... I wish everything was peaches and cream and you could just take a strawberry to cure Lyme Disease, but it isn't the case. It's the reason why Cancer patients still take chemotherapy and radiation.
There's an overwhelming amount of patients freaking out that a lot of patients are reaching remission with Dapsone in a matter months because they've had to take years of antbiotics, while others freaking out over the extreme side effects. Hello, Welcome to Life and Lyme Disease.
We've been here, done this a million times. You find a better treatment than IV antibiotics and these persister cell antibiotics, let me know, I'll give it a try. The consistency just isn't there with Rife and herbals, regardless of what anyone says.
I feel sad for those that can't tolerate antibiotics, but I sense a lot of resentment over this latest medical breakthrough. I had posted my progress on facebook and other forums, you get these people coming out with an immediate bias opininion saying I'm going to relapse and it's an unsafe drug. Ignoring the success Dr. Horrowitz and Dr. Jemsek has had with it.
What I've seen with this Disease over the years is, rife groups forming, herbal groups forming, conspiracy groups forming. They all thinking they have the answer and thinking what they say is gospel. Lapis_29 remarked about
this in another thread. What I've seen over the years is, some of the top Doctors from ILADs say things on IVs and other treatment, then it somehow gets twisted and manipulated by other people on the forums.
Dr. K spouts a lot of unscientific nonsense that gets repeated on these forums as if it were gospel and it drives me nuts. he advocates cilantro for mercury toxicity which has no scientific basis and will likely make thing worse. just not a fan.
Great point about syphilis and other spirochete infections! never heard of anyone saying they 'go dormant' or whatever. Herpes viruses can go dormant, been proven. Dont think its ever been shown that syphilis spirochetes go dormant and then are simply never a problem again. So why would that be true of Lyme? Syphilis and lyme are the only spirochete infections that can infect the human nervous system.
The amount of actual hard core scientific research on this disease is dreadful.
Did you hear what Dr. Horrowitz said? "getting to what I think's leading to a cure."
Why not be happy and consider the medical breakthrough this has had for some Lyme patients so far.
You realize that we're in an opioid crisis right now, you now how much safer Dapsone or Pyrazinamide is compared to opioids, yet people are still complicit with the millions of people that are currently taking and overdosing on opioids.
This is coming from a person that believes in taking herbs for pain, I'm just more of a realistic person. I take cannabis, CBD oil, turmeric and vitamins on a daily basis. I wouldn't touch pain pills, even advil with a 10 foot pole. I never used any in my 7 years of treatment of Lyme Disease.
Most the damage done through treatment with lyme disease is through pain pills, because people can't handle the pain. You stay on those drugs for months and years, they end up killing your organs. Now that C. Diff has been basically cured with fecal transplants, lyme patients have a lot less to worry about
with antibiotics. You take a probiotics pills, keffir, and yogurt. Up to 50 billion a day like Dr. Burrascano says, you shouldn't have a problem.
As always, I highly suggest taking long breaks between powerful antibiotics like IVs, Dapsone, and Pyrazinamide. Like a 1 month or 2, one year I took a 7 month break. Herbals like Cats Claw, Japanese Knotweed, Rick Simpson oil, and CBD oil can be a great alternative, while letting your body detox.
I'm just very skeptic of reaching remission with any of these herbs because of the science that's surfaced on persister cells. There's a reason why people relapse and the bacteria keeps coming back. These herbals can be good to somewhat hold of an infection back, but cure or remission, very doubtful. There has to be a specific antibiotic given for persister cells, which what we found out with Leprosy and Tuberculosis or it will keep coming back. Science FACT!
Post Edited (Charlie55) : 11/19/2017 6:36:23 PM (GMT-7)