My wife is currently on her third abx..started with Doxcy, then Zithro and now Flagyl...
Needless to say we are scared like hell to take this one! She is starting on a low dose 1/2 pill 2 times and then will gradually work up to 1 pill TID.
I have been told to watch out for the first sign of Herx and stop immediatlely. I would appreciate to hear some experineces? We are very new to the disease having recenlty been diagnosed. Thanks for any guidance you can provide.
Posted by canefan17 (Member # 22149) on :
I like the title of this thread.
: ) I feel the same way about it
Posted by tmcm (Member # 23249) on :
LOL..fixed the typo, but I did sound better the first way!
Posted by lymebytes (Member # 11830) on :
Had to stop this drug, caused too much pain and neuropathy almost immediately that was totally uncontrollable. But I have high pain levels to start.
Flagyl can be a good drug for some and not for others.
We are all different and she will likely have to experience it to see if it helps or not.
Best wishes.
Posted by canefan17 (Member # 22149) on :
Please don't worry to death about flagyl.
It is a crucial part of treatment.
The more worked up you get the worse it'll be.
PS: It wasn't that bad for me.
Posted by ping (Member # 6974) on :
tmcm - When you say 1/2 a pill, that doesn't tell us what dosage it is. What's the mgs. on 1 whole pill?
Posted by tmcm (Member # 23249) on :
250mg pills
Posted by tmcm (Member # 23249) on :
canefan17- thanks and we are definaltey trying to stay positive and we understand that even the bad days due to herx are acutally "good" days. Right now we are just a bit overwhelmed with information and trying to gauge just where we stand. One of our biggest fears is that things will become significanlty worse, right now I would consider her a "high' functioning patient, she still works full time and fights thru the tough times with limited disabilites.
Posted by canefan17 (Member # 22149) on :
Flagyl is a necessity though. You can't avoid it.
Sounds like you're doing the right thing. Slowly building up the dosage.
Just make sure you bust those cysts up or you'll be wasting your time in treatment.
Posted by randibear (Member # 11290) on :
you've got to tough it out. sorry bottom line.
flagyl and biaxin are the best.
but believe me, you'll go through hell but it's worth it.
Posted by jennie46 (Member # 20953) on :
quote:Originally posted by lymebytes: Had to stop this drug, caused too much pain and neuropathy almost immediately that was totally uncontrollable. But I have high pain levels to start.
Flagyl can be a good drug for some and not for others.
We are all different and she will likely have to experience it to see if it helps or not.
Best wishes.
If you can't take Flagyl, what do you take for cyst busters?
Posted by Karen Mc (Member # 23354) on :
I just started flagyl as well. My LLMD had me taking it 1 week on then 1 week off. I made it through the fist week---finished up last Friday. I did not like it at all, i think it seemed to make me itch terrible and have diarhea (sorry). I will better know when I start back up for my next week period on Saturday.
I had also started some new supplements at the same time so it may have perhaps been them but I'm pretty sure it is the Flagyl.
As important as it is I am going to try to stick it out but it has been one of the worse medicine I've tried so far.
One think I have learned is what is bad for one person isnt necessarily for another so perhaps your wife will do just fine.
I had to cut way back on my plaquenil when I first started it and build up...so that is good your Dr is doing that with her.
If you find she cant take it all the time you might check into the 1 week on 1 week off.
I am seeing a great LLMD and I trust his judgement so it must be ok to do that.
Godd luck and God Bless,
Karen (:
Posted by Karen Mc (Member # 23354) on :
Oh yeah, I might be missing something cause my lyme brain isnt working but isnt Plaquenil also a cyst buster?? Im on both plaq and flagyl. MY llmd wanted me to drop the plaquenil for mepron but I couldnt afford it??? Just wondering
Karen
Posted by asummers (Member # 18068) on :
I am in the minority here, but I love Flagyl. I take 3 full doses a day and I feel the best on this med. So you never know!
Posted by jennyflyer (Member # 12792) on :
I'm with asummers, I did great on Flagyl and had my best improvement with it. However, one tiny sip of alcohol and I was crying for my mother, so they mean what they say.
Posted by Elaine G (Member # 20735) on :
No problems with Flagyl.
It seems whenever I have a herx, I try to smile, I know something is dying off and it ain't me Posted by tmcm (Member # 23249) on :
Thanks for the encouragment and we are staying positive. Also experiencing a new issue with muscle spasms, mainly when she wakes up in the morning and lasts for 45-60 minutes...new symptom? Herx? Side effect? So hard to tell exaclty what it is and we are going to continue to move the dose up.
Posted by joalo (Member # 12752) on :
I just started flagyl yesterday. I'm taking 500mg three times a day for one week each month. So far I'm doing okay.
Your wife is lucky to have such a caring husband! Posted by Ariel1 (Member # 22227) on :
I had to stop Flagyl. I was constantly had nausea and diarrhea.
I was taking 1000mg per day. Even when I dropped down to 500mg, I was still haveing problems.
I could tell it was working for me though but my body just couldn't take it.
Everyone will react differently.
Posted by VB (Member # 16824) on :
in my experience... go slowly and don't think that just because you're OK after a week that you should rush to ramp the dose up to full level. It took me about 4 months to get up to where my LLMD wanted me (750mg/day, 3 days/wk). It still affects me and I've been on it for over a year. I too work full time so understand the need to be functional. When I ramped up to quickly I had to call in sick to work, which I never do. You can do it... I would just recommend going slowly.
Posted by tmcm (Member # 23249) on :
We are experiencing a new terrible symptom now, her head is full of "pressure" and feels like it is on fire?? Any suggestions? Herx?
Posted by randibear (Member # 11290) on :
when i first started, i had headaches so bad i had to stay in bed and i would just cry.
i really thought i was having a stroke or something because my veins would swell and i would have intense throbbing pressure at my temples.
it can cause scary herxes.
Posted by keltyl (Member # 14050) on :
The whole thing here is that everyone is different. I don't think you should be scared, that will make it worse.
I tested positive for c-diff but had no symptoms. Am doing IV rocephin. Was put on 500 mg flagyl 3x a day....no ramping up. Fatigue was overwhelming along with depression and a host of other things. I just stuck it out.
Posted by Florence1 (Member # 22960) on :
what is flagyl given for???.....is it typicaaly for Lyme......
Posted by Jason21 (Member # 16393) on :
Flagyl initially worked ok for me when paired with Biaxin, but I have seen a great improvement since I switched to the cyst-buster Tindamax, which also is an antiprotozoal and antibiotic. I take Tindamax with Cipro. 500mg Tind and 250mg Cipro twice daily.
Also, I am not having the yeast/thrush issues with Tindamax that I had with Flagyl.
Posted by WildCondor (Member # 434) on :
Flagyl rules, yeah you will herx and its hard to take but the benefits of blasting the Lyme are far worth it. Take it all!
Posted by keltyl (Member # 14050) on :
So what does it mean having the bone crushing fatigue, depression etc I had while on it. Could it be the high dosage? (500mg tid).
Posted by daniel (Member # 22201) on :
i didnt have fatigue.. but bad brain fog and depression.. flagyl is a drug from hell.. but it blew my headaches away.. i will pulse it now every 3 weeks for 10 days on 800mg a day
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