I am not sure why I am so hesitant about all this medication that I'm being given. For some reason I'm worried about all of this medication causing more harm than good. I don't think long term antibiotics are a good idea, and it seems like no one ever improves with oral antibiotics anyhow.
Well, just thinking ahead... After years of various antibiotic use, how does any of it remain effective. I'd imagine that any bacterial infection would be tougher to eradicate as per resistance and such... I just can not see anything positive coming out of this.
Does anyone ever get better at all with long term antibiotics?
I realize it is only anecdotal, but I consider myself in remission after long-term treatment with oral antibiotics. At my worst I was mostly bedridden with exhaustion; while I maintained light part-time work I was just propping myself up at a desk for a few hours a day. I had brain lesions on MRI, mitral valve prolapse of the heart and palpitations, and joint damage. I treated for almost 4 years, orals only.
I've been off treatment for well over a year now, I work full time in a challenging career (often 60 hours/week, sometimes more), get great reviews at work and my life has moved on from being sick all of the time. I never re-did the brain MRI, but my dr. did re-check my heart by ultrasound and I no longer have palpitations or evidence of prolapse. The ganglion cysts that had developed on my hands/wrists also went away.
I had a lot of doubts along the way, but I always came back to the fact that other than my LLMD and the long term abx treatment, I had no other workable diagnosis or treatment plan. All any other doctors wanted to do was "wait and see" and treat symptoms. To me, the risk of long term abx was low relative to the potential benefit of being cured.
oral doxy and IV did absolutely nothing for me except end in stroke during the IV..Even though the hospital completed my IV while I lay in the hospital for over a month, it did NOT work. Lyme titers still high. I went to a very good herbalist in my town, the brother of my pcp actually and after 8 months I finally hit remission. I have been reinfected several times since then but can get back on track in 2 to 4 weeks.
Thanks for the excellent responses everyone! And thanks wonko, that's great. That gives me some hope.. I'm always hearing so many negative things and rarely hear of anyone getting better with orals. The thing would be staying on track, thinking positive, and keeping my head straight for so many years...
So it sounds like herbs work better for some.. I have considered that approach and/or a combination approach. My LLMD is being less than helpful, unfortunately. And being in my part of the country, I have few options.
I think one reason why you hear so much about negative outcomes and so few positive stories of treatment is because lots of folks, once well, stop hanging out in forums and stop updating folks on their progress.
I use this website for more than just the Lyme forum, I track my exercise and other medical details here and read/post to other communities. So, since I'm around on the site, I still pop in on the Lyme community. I've long since abandoned my accounts on dedicated Lyme sites.
I entered my 3 year in March. I really believe that for those of us that have been infected for 10 years or more are going to have a harder road in getting cured.
I use to be a strong believer in abx only treatment. After joining the extra large FB Lyme community and becoming active in International Lyme, I have seen many different type of success stories and have opened my mind
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