Was on IV rocephin + IV zithromax for one month, no improvement; switched to IV rocephin + IV levaquin for three weeks, night sweats came back, stopped.
Got off IV totally for a week, and now on oral amoxillin for maitenance, bam, began to have tingling in hands and skull. Haven't felt this kind of tingling for almost a year, I'm feeling discouraged and scared.
Will call my doctor to put me back on IV next week before I can see Dr. J in SC April 11. Hopefully it's a new start there.
Sorry for venting, and thanks for hearing...
Posted by Fordace (Member # 14874) on :
Hang in there....I feel like you most of the time. It's very frustrating, feel like life has just stopped completely for this wretched disease.
It is scary, no doubt......hang tough though, what else are you going to do. I found out on Easter Sunday by Laughing very hard (something I hadn't done in about a year)...some of my symptoms diminished for about 5 hours.....OH how I miss Bugs Bunny and "killer".....the buzzard.... Posted by TerryK (Member # 8552) on :
Vent away. That's part of why we are here, so we can vent when we need to. If anyone understands, it's your fellow lyme pals.
I've been told that if one relapses soon after going off abx, that would indicate a co-infection. Perhaps bart coming back? I think bart has to be treated for more than one month but I don't know a lot about IV, I've only been on orals at this point and I'm not a doctor.
Hope your doctor can fix this quickly. Hang in there. Seems like we all have to go through this type of thing a few times.
Please let us know how it works out for you.
Terry
Posted by justag (Member # 11145) on :
Thanks pals!
One more thing, spend the money NOW to find a good LLMD, don't wait until this disease is getting more power and control of our body, brain, heart, and spirit.
I wanted to save some money by going to my current doctor who's covered by insurance, but now I look back, should have spent $ on a real LLMD this time last year when I first started treatment.
The torture, the humiliation (neuro lyme can't function at work), and the struggle...How much money can you put on it for solving all these caused by this disease? More than what we pay LLMDs not covered by insurance, I believe...
Posted by Fordace (Member # 14874) on :
yeah, I came to the realization that I had to spend the money instead of waiting and waiting......I'd rather be poor and healthy than sick and rich......
Posted by justag (Member # 11145) on :
quite a few lyme email pals suggested seeing LLMDs who are not covered by insurance, but I kept ignoring until a year later...I didn't save any money, maybe if luck had it, I could have saved a few thousand bucks, but luck, can't we call ourselves lucky by contracting this disease? So don't rely on luck, go search for expertise and experience.
I'm saying the above to myself, but hopefully it can also help warn a few others to reach out to real LLMDs NOW than later... Posted by trish4 (Member # 14156) on :
2 months is defenitely not enough. you most likely flared your symptoms rather than getting rid of them.
Posted by justag (Member # 11145) on :
I agree it's too short...Before that I was on oral for two months, and before that I was feeling well for almost half a year...Miss those days!
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