I'm feeling like Flagyl might kill my @ss...or if nothing else I might have a nervous breakdown.
I just don't think I can take this crap anymore - and I was only pulsing 1/8th a tablet.
Don't anyone tell me that feeling that awful on that small a dose is impossible...what I'm wondering is if others have felt semi-psycho while on it ??
In other words -- make me feel better because I think...well, atleast I never got as bad as...YOU.
What's your worst case scenario with this med?
Thank you for your kindness.
Waiitng for the men in white jackets,
-------------------- DR. Wiseass NOT a real doc - just a real wise Posts: 792 | From USA | Registered: Jan 2005
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lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
Hey DW!
Flagyl is a butt kicker, as you've already found out. It REALLY gets into your head, so don't be surprised at some really violent mood swings
(laughing at inappropriate times, crying for absolutely no reason). When I first started (and I was on a small dose - 375mg once a day), I would get instant brain buzzzzzzzzzzzzzzzzzzzzzzzz.
Then the overwhelming urge to lay down and sleep. Not to mention the gut ripping explosions (at first) in my stomach that would follow shortly thereafter, and every time I ate..
But, that said, it did get better over time. And to me, flagyl wasnt' such an 'F' word - it really helped me - especially my stomach.
I also started dreaming again for the first time in a decade not too long after I started it.
So, go slow with the doseage, and no, you are not alone in your misery. It kicks *** , it was meant to, but you will get through it.
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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posted
Wow...that sounds horrible. I am supposed to start it soon and now I am wondering if I should!! I couldn't take Ketek so wondering if Flagyl may kick my hiney too. Thanks for posting with your experiences!
Posts: 331 | From virginia | Registered: Nov 2005
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posted
It was the only thing I ever herxed on and I wish I could have tolerated it better but I stopped taking it after 1 1/2 weeks when I began to get peripheral neuopathy in my foot in the form of a hot sensation on the top of the foot that I still have!
I'm wondering if I dare to try tinidazole as I don't know of anything else that will effectively deal with the cysts.
Posts: 175 | From ma. | Registered: Aug 2005
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posted
You have to take SOMETHING to bust the cysts or you can't get well. Yes, it's not a user-friendly drug for most.
You could ask your dr to prescribe Tindamax and see if that's any better.
[or tinidazole]
Remember, slow and steady wins the race. So back off the meds when you need to.
For me, the worst was the horrible depression. I don't know how I made it through. Took the stuff for at least a year.
Hang in there.....one day at a time. ***ducking, as DR W throws things at me***
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
I was a total nut case on both flagel and tindamax(tinidazole). Although the tinda was easier to bear. Over time I wasn't so depressed and psycho. Although it still was hard in other ways.
If it where me I would back off till the herx clears. Step up some detox.
My friend is using questrian (sp?) with good results for less brain neurotoxin build up from the herxing.
hang in there
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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posted
I'm still trying to take Flagyl too. I am so sensitive to it I can only take a small pinch of it once, about every 3 days.
I get so tired from it I can't function. For some reason I get really stuffy in the nose and short of breath too.
Kathy
-------------------- You never know how strong you are until being strong is the only choice you have. Posts: 807 | From South Dakota | Registered: Jul 2005
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GiGi
Frequent Contributor (5K+ posts)
Member # 259
posted
If you are heavy metal toxic, flagyl is a killer. I took it exactly two days and quit. Then after I had done some more metal treatment, many months later, I took it again for a 2-3 weeks. Never longer, and I have absolutely no cyst problem. Flagyl/Tiny kills the fungi and the fungi hold heavy metals in their cell wall. That causes metals to circulate in the system causing all sorts of most unpleasant symptoms. Screaming symptoms - none of which I had after addressing metals for a while.
I know most of you think of Lyme - and nothing else. So be it.
Take care.
Posts: 9834 | From Washington State | Registered: Oct 2000
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posted
One eighth of a 250 mg pill twice a day almost did me in, inside of three days. End of Flagyl for me, forever.
Flagyl-caused problems have diminished with cessation of the drug, but have not subsided.
Yes, to craziness! Hyperaccusis and reactivity to sounds (caused by Flagyl)in combination with the sensation of the sounds inside me and inside my head made me nutso: I was mortally afraid because I could not determine what was happening around me when I drove my car (twice!) and outside of our house at night. I am home alone at night often. Our house is far from neighbors in a wild area and the phone went out the night the hyper-everything happened. Lucky I had cell phone phone-a-friend left!
From Flagyl my left ear started a humming and buzzing that has not left in 10 months. During the FF (Flagyl Freak) if people talked to me it sounded like they were in a tunnel, then it changed to sounding like they were underwater.
Crushing chest pain from extreme anxiety was also part of FF.
The FF lasted a few days after I stopped the drug, but I think the drug did something to my "filters"? Or tolerance level for stress? I'm much more reactionary to distressing events than I used to be and the events stay with me for days and weeks, churning in my mind. Amyone else with this?
Oddly, I am tolerating Tini just fine though I went slow as a turtle from 1/16th of a pill to 750 mg a day.
Good luck! Be wary careful.
Posts: 422 | From Luck home | Registered: Sep 2005
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liz28
Unregistered
posted
The first month on it, I was visiting support groups for the terminally ill, because there was no one else who could understand how a flagyl herx felt. It was like going through chemotherapy.
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posted
It was very interesting reading everyone's post. I am a newly diagnosed Lymie and take Flagyll for one week a month, along with Minocycline the remaining days. I am due for my second round of Flagyll and am worried about taking it. I am finally starting to feel decent and I know the Flagyll is going to knock me on my butt. Wish me luck!!
Posts: 73 | From just outside of Lansing, MI | Registered: Jun 2006
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Dr. W -
if it is so bad that you don't think you can handle the Flagyl, then you should talk to your doctor about other options. You won't get healthy if you overstress your body and mind.
Other option is to reduce the amount of time you are on it. My LLMD starting me one week on, two weeks off. I was in so much pain, that she switched me to three days on, two weeks off. Worst pain I've had, and I've had pain for 17 years.
That made a difference, and I even increased my dose. Which was all fine and dandy until last night. I couldn't sleep and there is pain everywhere. Vicodin didn't help it, but some sublingual B-12 and folic acid seemed to. Or I just got tired enough to fall asleep.
Waiting to hit the hour post synthroid so I can take something else...
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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I know I'm just a bit of a smart alec ((*cough cough*)) sometimes, and it sounds kind of mean for me to have asked you all to tell me you felt worse so I would feel better mentally..know I don't wish this crap on anyone - just very (temporarily?) nuts for awhile.
I thank you all for sharing your personal experiences and your opninons. I DO think there are some 'biological terrain' issues that I certainly must address, such as my heavy metal/dental issues; fungus; mold toxicities, neurotoxins, etc. that probably just muddy this whole crazy Lyme picture.
I don't underestimate the power of Mr. Borrelia and his friends Babs & Bart - but I also think that in order for some of us to get well, we really have to look at EVERYTHING. This is a slow motion kind of lesson for me as for some reason I have a hard time learning new material. Hmmm. Wonder what could cause that?
I also learn so much from others here on this board - and am eager to learn from any more experiences if more of you want to share; and certainly am open to hearing some of your theories as to just WHY flagyl can cause the big "Flagyl freak" as MJO so eloquently put.
For those of you that have yet to try it -- just be careful -- please go slowly at first. People react differently to things based on their individual situations.
And a special note to Ms. Tu-Tu, matter of fact I did throw something at you -- my bottle of Flagyl -- did it hit you square on your noggin? I'm just gonna use that bottle of pills as a weapon to aim & throw at people who bring me difficult news (shoot the messenger!) cuz I ain't taking that crap for a long @#$% time...if EVER AGAIN!!! And no one can make me...so THERE!
Thanks again.
Hugs & Kisses,
-------------------- DR. Wiseass NOT a real doc - just a real wise Posts: 792 | From USA | Registered: Jan 2005
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posted
Gigi, is there any way I can ask you about the fungi , heavy metals and detox during Flagyl/Tini? Please PM me. Thanks.
Posts: 175 | From ma. | Registered: Aug 2005
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It's that one sliver a week that was trying to kill me! NO kidding!
I think I'm going to wait and do some personal 'clean up' work and do some other things first...you know, nothing like procrastinating with good intentions.
When I do try it again (if EVER) it will not be a sliver, but the tiniest speck -- kinda like the size of a tick nymph!
Hugs & Sloppy Kisses,
-------------------- DR. Wiseass NOT a real doc - just a real wise Posts: 792 | From USA | Registered: Jan 2005
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Dr. W,
If your body is overloaded, then you won't get better. I've just discovered that my body is always running in stress mode, so the normal functions aren't taking care of themselves. Medical term being autonomic neuropathy.
I've been feeling like my body was overloaded. And now I know it really, truly was. I just started working with a doctor who specializes in environmental medicine and the autonomic nervous system. Hopefully he can get my system healthy enough tht it can fight the Lyme.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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posted
I'm afraid of Flagyl because I have absolutely no reaction whatsoever. It scares me that it's supposed to do so much, but my body doesn't seem to react.
On the other hand... IV Zith did it for me. I went deaf in one ear and slept over 20 hours a day.
-------------------- Sometimes when I say �Oh, I�m fine� I want someone to look me in the eyes & say �tell the truth�
posted
Worse case senario is that it left me with peripheral neuropathy in my feet (I was taking 1500 mg daily for almost 4 months). And almost 4 months later it hasn't gone away. I have no idea if it ever will, and either does my neuro. My LLMD doesn't seem to want much to do with me. Now I know why these treatment methods are so controversial, although I feel like I was one of the lucky ones.
Otherwise, while on it, I was very week, incredibly depressed, never had a major herx, just felt continually sick (was also on IV Rocephin at the same time.)
Best of luck, Jill
Posts: 203 | From Jacksonville, FLorida | Registered: Oct 2005
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posted
Most of my early problems were neurological, and it wasn't until a course of flagyl that most of them fell away.
I was on it for 7 months, along with zith.
But it was hell. The whole time. I was dark and depressed, and feeling sick and toxic. For two weeks I had sweats that drenched the bed. They were slimy sweats, and they were cold sweats, and they soaked through sheets, the mattress, and the comforter. I would have to shower and change the sheets in the middle of the night. Sometimes several times.
I NEVER felt good on the stuff. Ever. But all the weird dissconnection-type sensations, terror, and panic, have been gone for years now. (Except for occasional short triggers).
Posts: 845 | From Eastern USA | Registered: Jul 2006
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Monica
Frequent Contributor (1K+ posts)
Member # 224
posted
I took Flagyl (however much I could up to a max of 750mg daily) for four months. It damn near killed me.
I am off all abx now and trying to detox. New LLMD I am seeing wants me to approach holistically.
Posts: 1757 | From Somerset County, NJ | Registered: Oct 2000
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quote:Originally posted by lucy: Gigi, is there any way I can ask you about the fungi , heavy metals and detox during Flagyl/Tini? Please PM me. Thanks.
Please PM me to Gigi. Thanks, Kathy
-------------------- You never know how strong you are until being strong is the only choice you have. Posts: 807 | From South Dakota | Registered: Jul 2005
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