This is topic i feel like im dying... in forum Medical Questions at LymeNet Flash.

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Posted by laurisabelle222 (Member # 16591) on :
I posted yesterday about my recent experience on Rifampin and Im loosing it.

Last week, I began the Rifampin (been on zithromax for 3 wks plus plaq) and I had flu like symptoms that lasted for a day.

besides that symptom, I've been terribly dizzy to the point that I really haven't gotten up. I go from the couch to the bed and thats it all day and all night.

I was so happy with the flu like symptoms last week bec i thought I was herxing... now im not so sure.

I spent the whole entire weekend in bed, feeling horrible. I still have all the symptoms I've been having before the rifampin but with the addition of the dizzyness and flu like symptoms that only happened once or twice. So maybe its not a herx afterall.

I know its only been a week on the rifampin, but i've also been on zithro for a few weeks. I guess I figured id see some difference, even a small one.

Today I got on the treadmill, thinking that i need to fight my way through this.. After I went to bed with chest pain and woke with it, i figured i'd get the blood pumping. I walkly SO slow but had to stop bec i thought i was going to faint.

so now its back to the couch. I took a salt bath and it jsut made me more dizzy.

I just cant live one more day like this. I havent had one good day... not one. Its maybe a decent 20 mins here and there, but its like i have NO quality of life.

I spoke to my husband today about it and he tells me, it will get better.. takes time...u are being treated... soon u will start the malarone...

But it doesnt help. I've been hearing this for 2 years now and im sick of it. I hoenstly dont belive i will ever get better.

The worst part is, I dont know whether these symptoms are a herx or babesia coming out or just getting worse.

If I knew it was a herx and that its temporary i could do it. Not knowing is killing me. the disease is killing me. Mentally and physically.

I just really feel like the medication isnt working... i feel like i am just laying here letting something eat me alive...

Im frustrated and really have no quality of life anymore. I dont even have my one cup of decaf coffee...
Posted by springshowers (Member # 19863) on :
Hello. I am so sorry your feeling so horrible. I think we all can relate and know what your feeling.

I would recommend going with you gut and maybe stopping meds and taking some time to clear it out and figure out if it is a herx or not.

I know rifampin for me was one of those meds that I could not take. It is not worth the extra suffering if it is making someone feel like not living and suffering even more for extended periods.

I think you said it yourself. If it was a herx that you knew had an end you could get through it but if it goes on and on and on its too upsetting and painful.

Think it over and maybe take a break from it. I have never regretted a break. WHen you hit the right med or combo of things you will know it.

Keep up the detox baths and any other detox modalities you do and keep the hope.

Its rough I know... It have been struggling for so many years and though I have learned that when I push myself through what the doctors think is a herx Its not worth it. Some of us are not built or able to push through it as others are and sometimes we have to slow stuff way down.

My recent therapy has been piling up junk and die off and I can not do it the 1x a week I even though I could. Its ok. Take the time you need and figure out what you can handle and talk to your doctor about it.

I hope you do feel better soon no matter what you end up choosing to do..
Posted by maureen2174 (Member # 11471) on :
awww... i am sorry you are having such a hard time.

just wondering, what is your blood pressure? what is your glucose level? i am wondering if either low blood pressure or glucose is causing the dizziness.

it definitely can be a herx though. for me, herxes always lasted a week or longer. when did these all start- how many days now?

seems like with rifampin, you wou. ld be hitting the bart. much more than babesia. is dizziness a side effect listed on rifampin? i never took it, but my LLMD did want to put me on it awhile back, said she was having great luck with it.

maybe you could cut back down on it- are you up to the full dosage now? if so, maybe you could ask your LLMD if you could build up at a slower pace? hmmmmm....
Posted by laurisabelle222 (Member # 16591) on :
Hey there [Smile] thanks for the kind words. I was jsut reading my symptom chart from the past few weeks and it seems like my worst days are sundays and tuesdays especially with the depression.

Im hoping it passes tonight like it did last week.

As far as not taking my meds, i dont want to do that without talking to my doctor. if i still feel this horrible tomorow i will give him a call.
Posted by maureen2174 (Member # 11471) on :
yes, i meant talk to your doctor about maybe lowering the dosage if it stays bad for you. i wouldn't do it without talking to him either.

maybe it is really hitting something hard and you have to work up slowly? i would give it a little more time though... feel better
Posted by CherylSue (Member # 13077) on :
I can't tolerate either rifampin or zithromax at all. I felt flulike and depressed.

I did get better on my favorite medications - doxycycline, ceftin, and malarone. Now, I can even tolerate Flagyl which I couldn't in the beginning. I work full time, BTW, although at one time I was on this board moaning with the rest of you.

Sounds like you have a lot of infections to clear. It takes time. Just back down a bit or more. OTC activated charcoal works wonders for herxes. It's cheap, too.

The people on this board are very supportive and will get you through the rough patches. Hang in there.

Posted by Jane2904 (Member # 15917) on :
Rifampin is tough. Did you start off slow?

Some people start with 150mg, we started our daughter with 300mg, then two months later the other 300mg for a total of 600mg.

Hope it passes soon, best of luck, Jane
Posted by jennie46 (Member # 20953) on :
I took Rifampin, off and on, for 5 weeks and felt just like you the entire time. I couldn't handle it anymore.
Posted by kellephant (Member # 24885) on :
i'm sorry you are having so many problems [Frown] we all feel for you... just try to hang in there, as hard as it seems. losing hope only makes your symptoms worse [Frown]
Posted by karenl (Member # 17753) on :
I always have to start my meds on extreme low dose and since I accepted that I am doing well.
If you are killing off too many bugs, your liver might be in trouble. My biotensor helps me a lot with these decisions.
Posted by Pinelady (Member # 18524) on :
You may be hitting something you did not know you had.

I might try lowering dose to start and do loads more detox before giving up.
Posted by lyme in Putnam (Member # 11561) on :
I felt that way the beginning on bactrim. One minute at a time. Not better, but just acceptable till some improvement happens. My husband says the same thing. It's tricky becuase you might get one good few minutes and then its gone for amonth. I know, I live it. minute at a time.
Posted by laurisabelle222 (Member # 16591) on :
Hi guys- Thanks for all the support. Its tough to get through something when you don't know for a fact that its actually working, vs just getting worse or anoother infection coming out- thats my big issue.

I called my doc and he wants me to keep at it for another 2 weeks before we make a change. Im assuming he thinks its a herx. he also doesnt want me to start malarone yet.

As far as ramping up slowly, Im only taking 150 mgs of the rifampin and 500 of zith, so I think i started off slow with the rifampin. So at least I did that- its always easier to work up to something rather than begin taking less. i always feel like failure when i need to do that.

So i guess I have no choice but to endure this for another two weeks. I hope hope hope something good starts to happen after that.

thank you all [Smile]
Posted by laurisabelle222 (Member # 16591) on :
Maureen- hey! My response earlier wasn't actually to you- it was to sourthgrl. I actually didnt see your message until just now. Im going to pm u.
Posted by lymebytes (Member # 11830) on :
Rif is tough and sometimes impossible that goes for Zith as well. The combo would make me feel like death too.

Talk to your LLMd asap ask about stopping and/or detoxing. For now, I'd detox, detox, detox. Activated Charcoal has been a miracle for me and my family. Take 2 hours from medications.

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