Hi guys! just wanted to drop in, give a little update. Been way too long. I hope you are all hanging in there!
I was able to restart abx treatments last June with Dr H (this was after a devastating death spiral herx that lasted a a year, was unable to treat that whole time, neuropathy drove me to the brink of suicide but finally connected with Dr H who first off helped stabilize my body). In these last 6 months I've continued abx treatments, and added in dapsone in September. Honestly it seems like it has been a very good drug for me. Is anyone else here on dapsone? if so how are you or did you do with it?
Doc keeps close monitoring via labwork as dapsone is a pretty serious med, also on several supplements to counteract potential med side effects, it really made me herx hard in the beginning, like getting hit with a freight train! I think it is still working quite effectively. He seems to say that large reactions indicate I had a high intracellular load. I have both lyme and likely bartonella, maybe it hits both, don't know how hard it hits bart though, I think the bartonella is really the main driver behind many of my symptoms. And prob have some type of protozoal infections in the mix but I'm not sure (as with most things hard to be sure on anything with this stuff!). As I understand it dapsone hits persisters, which is key, but you need to combo it with the other proper antimicrobials for solid effectiveness (there is a great Zhang lecture on youtube on this, comparing lyme to the TB treatment model https://www.youtube.com/watch?v=YsitQjnJ6I8).
So I think the plan is to continue dapsone for 1+ year, I'm also pulsing rifampin, cefdnir, and taking doxy daily. Also on a few herbals as well. Treatments do leave me a bit tired but I have been improving for sure, my mental clarity and cognitive functioning are much much better which is such a great feeling. Been able to read real books for first time in 10 years. And neuropathy improved a lot, finally felt well enough that I was able to get off those brain meds (gabapentin and lexapro), they really helped me with the neuropathy and coping with the pain that was driving me to the brink. LDN also helped, still on that. But absolutely relieved to be off the brain meds, really hated being on those, I'm quite leery of what kind of repercussions can happen with these products. But hey, you gotta do what you gotta do to cope with symptoms. Getting off them also probably plays a role in helping my mental clarity, but I think the more fundamental aspect is lowering pathogen load.
I feel like the pathogen load has been slowly getting knocked back over time, but still a little ways to go. But am way stronger than before. I do think that the dapsone messes up my stamina a bit and makes me really tired after exercise, and my methemoglobin is a bit elevated (this is a side effect of dapsone, I dunno maybe this plays a role in fatigue?), so I still haven't been able to do much cardio exercise yet.
Eventually I wouldn't mind exploring rifing, especially when I get to the point where I taper off abx. Have any of you done this? maybe the gb4000 or something but it is a big investment. Heard a large amount of interesting anecdotal accounts of rife helping patients, enough to make me very intrigued (originally I thought rife was pure bs but as with most things lyme really makes you go through the looking glass on a lot of previously held notions!). I have also heard good things and recommendations on rife from experts, researchers, and medical practitioners whom I trust which heightens my curiosity. Firebombing with antimicrobials is ok but certainly not ideal, I mean it has proven very helpful for me (and many others), but eventually might be good to transition.
As it turns out I pushed my mom to get tested for lyme as she has had a variety of multisystemic symptoms for years, and my intuition was infections might be playing a role, especially given everything I've learned about
lyme/coinfections. Well we find out she is pcr positive for lyme and also has positive lyme specific bands on the western blot. The good news is that hopefully with treatments she will gain improvement in all these symptoms that have plagued her for years that she attributed to age and things of that nature. She has expressed interest in rifing as well, but we are going to pursue abx treatments as well. I just don't know yet about
investing in a rife machine.
But frankly given how much of a hell this experience has been I'd like to take every precaution to hedge against the resurgence of these pathogens... my mom has certainly become a very strong lyme advocate, even my dad, who originally viewed all this stuff quite skeptically. I think originally he thought I was exaggerating and being way off base in how furious and apoplectic I would get when I talked about
these diseases and how terrible and conspiratiorial the situation is with these diseases, their definitions, their treatments, etc. He gets it now and I appreciate that (he has worked in the healthcare field so initially was hard for him to wrap his mind around the controversy, disaster, and bad faith that has taken place with these diseases, just struck him as unbelievable).
I had to take such a long break from work. I'm slowly getting back into drawing, trying to build up consistency of working every day, can't quite work full day but it is nice to be a little productive. Plus drawing is good therapy for me
Much love to all of you, sending healing thoughts, my fellow lyme warriors!
Post Edited (sebreg) : 2/27/2017 4:58:54 PM (GMT-7)