Within a year, my symptoms started to return, especially fatigue, and internally knew I was still sick... instead of facing it, I ran off to Europe to see all the places I regretted not seeing before 2014 when I was bedridden. *I had a great time. ;) Since then, I have been living in denial that I have a disease that is insidious and debilitating.
It sucks, I mean there's points where you want to start enjoying life again, you try and put this disease on hold, in your mind it works, but your body isn't willing to accept it in the long run.
It's very easy to dismiss this disease and put family, job, and friends in front because they depend on you. Then before you know it, you let yourself go and crash again. Sucks, been through this a few times!
TODAY - I woke up and felt different. I felt alive, pain-free, not even a back-ache, and my feet did not hurt when I stepped out of bed. You see, I have been living with this type of morning pain for so many years I had come to expect it and rarely complain about it. So this morning - I decided to hop on the Internet and learn about PZA and this Lyme Treatment. I found this forum. And I am wondering if others are having moments of pain free clarity like this.
It's a great feeling isn't it, I felt what you're describing when I went on dapsone for the first time, but eventually the good feelings wore off and so did the effectiveness of dapsone.
I am curious to know what your dosage of Dapsone was? I think they are doing larger dosages for a shorter amount of time now.
I started off with 25mg for the first month, made a lot of progressed it seemed. Eventually made my way up to 100mg a day. Then after doing it for about
a few times for about
a year, a few long breaks here and there, I tried increasing the dosage to 200mg and even 300mg a day with no effect.
I suspect my problem is Babesia and because this coinfection is so hard to eradicate and becomes resistant to drugs like malaria, I eventually plateaued with dapsone.
Then got on drugs like primaquine, coartem, and artesunate where I started making progress again. But had to quit these because the severe psychiatric effects and herxing.
@Girly and @Charlie,
I completed IV Treatment with Dr. H & Team in 2014. I was at 90% and ever so grateful. I shed my "I am a Lyme Patient" skin and jumped back into life with both feet.
I really think that Doctors and scientists have made some huge breakthroughs with these persister cell drugs and biofilm busters like stevia. But what I think is lacking is IV form for penetration. I suspect Dr. H now wants to try saturating the tissue with 200-300mg of Dapsone. Some of these drugs have very long half lives, which is great. But I think what makes drugs like doxy and flagyl in IV form so effective is because of the penetration.
Other than those that I've heard reached remission on drugs like Dapsone through Dr. H and Dr. J's practice, the only other patients I've heard reaching remission indefinitely are those that went on IVs. And even then, you hear about
these stories of other patients talking to Mandy Hughes on Facebook saying how she now is vegan or on some strict no sugar diet. I just get the vibe that everyone is still relapsing.
But hey, we've made some big steps treating this disease and I've very hopeful!
The scary thought is that many say when they relapse after being in remission for a year or two, that this disease becomes harder to treat because of drug resistance and persister cells. Possibly biofilms too...
We still may be only scraping the surface with supplements like stevia, xylitol, and lactoferrin. Our stomach acid probably eradicates most of the supplements before they reach the blood supply, but I know for a fact how well stevia works, because anytime I paired it up with an antibiotic like dapsone, it made the drug so much more effective because I herx more and have so much more energy while being on stevia.
Just grateful to see you reporting your results on the forum to share with others... Keep at it!
Post Edited (Charlie55) : 5/13/2019 8:19:17 PM (GMT-6)