posted
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.
Posts: 52 | From Illinois | Registered: Nov 2009
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canefan17
Frequent Contributor (5K+ posts)
Member # 22149
posted
I like the title of this thread.
: ) I feel the same way about it
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
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posted
LOL..fixed the typo, but I did sound better the first way!
Posts: 52 | From Illinois | Registered: Nov 2009
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
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.
posted
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.
Posts: 52 | From Illinois | Registered: Nov 2009
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canefan17
Frequent Contributor (5K+ posts)
Member # 22149
posted
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.
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
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.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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RZR
Frequent Contributor (1K+ posts)
Member # 20953
posted
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?
-------------------- Tick bite May 2009 Diagnosed June 2009 Posts: 2329 | From SouthEast | Registered: Jun 2009
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posted
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 (:
Posts: 423 | From Virginia | Registered: Nov 2009
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posted
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
Posts: 423 | From Virginia | Registered: Nov 2009
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posted
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!
Posts: 379 | From Sydney, Australia | Registered: Nov 2008
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posted
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.
-------------------- Jennifer Posts: 266 | From Ocean County, NJ | Registered: Aug 2007
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It seems whenever I have a herx, I try to smile, I know something is dying off and it ain't me Posts: 671 | From Fort Myers, Florida | Registered: Jun 2009
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posted
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.
Posts: 52 | From Illinois | Registered: Nov 2009
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joalo
Frequent Contributor (1K+ posts)
Member # 12752
posted
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!
-------------------- Sick since January 1985. Misdiagnosed for 20 years. Tested CDC positive October 2005. Treating since April 2006. Posts: 3228 | From Somewhere west of the Mississippi | Registered: Aug 2007
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posted
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.
Posts: 453 | From TX | Registered: Aug 2008
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posted
We are experiencing a new terrible symptom now, her head is full of "pressure" and feels like it is on fire?? Any suggestions? Herx?
Posts: 52 | From Illinois | Registered: Nov 2009
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
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.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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posted
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.
Posts: 847 | From upstateNY | Registered: Dec 2007
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posted
what is flagyl given for???.....is it typicaaly for Lyme......
-------------------- Oct 09 Positive CDC Western Blot Jan 10 Positive Babesia Duncani Jan 10 Cd57 28 Mar 10 EBV, IgM, IgG HHV-6 IgG Posts: 739 | From NC | Registered: Oct 2009
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posted
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
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).
Posts: 847 | From upstateNY | Registered: Dec 2007
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posted
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
Posts: 371 | From velocity of light | Registered: Sep 2009
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