Two weeks ago i took my last tablet of tinidazol. not much, about 500-750mg/day for a few days, two courses. but i still feel like I am wearing a helmet of fog around my head. Confused, dizzy, cant think straight, I even cant walk and use my arms proper. I have stopped all meds. I had similar, not so strong symptoms from flagyl years ago and it stayed for half a year and came back on some occasions. I really regret to have taken this med again and am so frightened these symptoms wont go away again.
In the last 8 years I have taken about a dozen courses of flagyl or tini. With the first ones I didn't feel any difference, but when I look back now since the end of 2007 everytime I took flagyl or tini I got new neuro symptoms although I didn't see then that it was because of this med.
My llmd always told me it must be herx, how important metro/tini is in the battle against lyme and that I should take it again, which I did. Generelly I trust him, he knows so much about this disease and is nice. But I think he focuses on the theoretical side, I have to live with the practical consequences that some meds have for my live.
Now I read that the higher flagyl/tini is dosed and the more often it is used the more dangerous it is for the cns. Unfortunately I didn't know that before. I think it has affected my my cns by now. I got a lot more new cns symptoms on flagyl or tini, some of them never really went away: neuromuscular cramps, tremor, chronic insomnia, problems with coordination and moving. it has really changed my daily life for the bad.
Strangely sometimes a new neuro symptom started not while on flagyl/tini but days after I stopped it. Sometimes it started when I took another med (macrolide or tetra) after the flagyl/tini then and I thought it was this wasn't the flagyl/tini but the macrolide/tetra causing this. Now I am sure: it was the flagyl/tini.
When I see how many people take this med on this board without problems and some even with success I am really surprised (and even wonder if I have the same disease they have). I just want to warn everybody to be extremely careful with flagyl and tini. I wont touch it again in my life and wish I had never done so.
I am looking forward to hear your opions on this topic.
[ 07-29-2010, 03:50 PM: Message edited by: steven ]
Posted by NMN (Member # 11007) on :
Have you tried plaquinel? I felt like I was stoned out of my brains on my first course of flagyl 2 years ago. I had to stop after 5 days on 750mg with doxy.
I had to build up from a third of a pill second time around which is not like me, I will usually go gungho on meds and bite the bullet.
The more courses I do the less it effects me. I still don't feel good on it or anything but I don't herx anymore.
It still might be a herx from a very high cyst load. You also just might not do well on this drug. Sorry to hear. Hope you feel better soon Steven.
Posted by nefferdun (Member # 20157) on :
These drugs affect us differently and you need to pay attention to what you are experiencing because like you found out, it is not always a herx. There are some drugs I can't take either. I don't have any trouble with tindamax (yet) but I only take it twice a week. Maybe you would have done better pulsing it.
Try grapefruit seed extract instead. I hope you find something that helps you recover. It is so frustrating and disheartening to go through years of treatment and get worse!
Posted by lou (Member # 81) on :
Tini causes me problems when I haven't taken it for a while, then it gives me a monster headache. This gradually goes away.
I interpret this to be attacks on cysts that have been building up from abx treatment. So, that if there are no more cysts, then no headache.
This might not be your situation, but it does seem to be mine.
Posted by WildCondor (Member # 434) on :
The herxing is almost always strong on Flagyl, and that is a good thing! It means the drug is working and hitting the target. It can cause depression and feelings of doom, but in my experience all well worth the end result of being symptom free. I would never have gotten better without my beloved Flagyl. Yes, you do need to watch out for peripheral neuropathy as a drug side effect and your liver, but for Lyme treatment, it is the bomb! Another thing, slivers of pills makes no logical sense. Flagyl, when used properly will both open the cysts up AND kill them. Usually Flagyl works best when taken for 2 months straight at doses of 1,500 mg day or so and then when you switch to the pulse it is usually 500-750 mg 4x per day for 4 days on 3 days off 2 weeks in a row then 2 full weeks off. All of that is usually combined with other antibiotics to make it a more powerful drug cocktail. Love Flagyl! )
Posted by Haley (Member # 22008) on :
When my doctor finally let me take Flagyl, He said 2 weeks on and 3 months off. Obviously he is not an LLMD. He told me that close to 70% of people get permanent neuropathy when taking this for a long time.
I then saw all of the people on this board that have taken it for several months. I was shocked. I have tindi sitting on my shelf waiting for me to try but I have not tried it yet.
I have heard many Lyme patients say that Flagyl was the turning point in their treatment as Wild Condor says.
Many of these medicines can cause harm to our bodies. It sometimes comes down to: do you want to live with Lyme or take the risk with this medicine?
I usually take the risk and I listen to my body. I think I can tell when something is not a herx.
Wild condor - What did you take with Flagyl?
Posted by onbam (Member # 23758) on :
If you google "nitroimidazole neurotoxicity," you'll see that these drugs can in fact cause neuro problems on their own. Most people who are prescribed them only take one or two pills...it seems like we're the only ones who take high doses chronically.
Posted by Dawn in VA (Member # 9693) on :
Ditto for me to what Lou said. I am usually OK with tinni, but once got a horrible, horrible headache that only went away when I stopped it. I went back on it, and pulsed it instead of continual, a month later with no problem.
Posted by steven (Member # 13101) on :
Thanks for all of your kind words.
Haley, after my bad experience with tini I am shocked as well that all of the people on this board have taken it for several months :-)
you wrote: "Do you want to live with Lyme or take the risk with this medicine?" Good point.
I sometimes ask myself if I dont risk too much. I only got so terribly ill cos I took the risk of steroids, when I didnt know i have lyme. and now most antibiotics dont help me and some like tini even make my unbearable state worse. then why do i take meds?
then there is the point that you can never be completely sure if it is really lyme you have. and even if it is you cant be sure if abx help.
On my research about tini side effects on the internet i found some similar cases of people who got new neuro symptoms or extrem dizziness from flagyl and some didnt get rid of it afterwards.
Also this study doesnt sound like it is a harmless med:
It says: "We conclude that Tinidazol is genotoxic, cytotoxic and is able to modulate cell death through apoptotic mechanisms".
Posted by CD57 (Member # 11749) on :
it's not harmless. But again -- which is the worst of the evils?
Posted by WildCondor (Member # 434) on :
Flagyl can be used with many things, I used Bicillin LA 4x per week, IV Zithromax 1,000 mg, Ceftin 3,000 mg. Also mixed with 2,000 mg Biaxin and 4 teaspoons of Mepron plus artemesia.
Posted by seekhelp (Member # 15067) on :
WC, no bacteria could survive that nuclear onslaught!! Posted by steven (Member # 13101) on :
Agree to seekhelp: Thats what I'd call a hardcore-combo! Im glad it helped you, WC.
Posted by Marrit (Member # 25454) on :
WildCondor, no offense, but you must have a body like a rock. I could not take Flagyl. Three days and the third day at 500mg 2X daily, that was it for me. I had a lot of paresthesias and then symptoms of peripheral neuropathy started. I stopped. At my doctor's suggestion, after 2 weeks I started again at 1/4 the dose (250 mg 1X daily). After a total of 1000mg I was back where I started and getting worse. I stopped immediately, but it took one whole month to get rid of the picking feet. I would think anyone with nerve problems would find them exacerbated on Flagyl. The way I feel about it, why not just inhale Sarin (nerve gas)?
And thanks Steven for your post because I was seriously thinking of trying 250 mg Flagyl again. I had already forgotten ... !!!
Posted by steven (Member # 13101) on :
Marrit, Im glad my post played a part in your decision.
(MR Imaging of Metronidazole-Induced Encephalopathy: Lesion Distribution and Diffusion-Weighted Imaging Findings)
Posted by Marrit (Member # 25454) on :
steven, thank you for posting this link. So, how many Lymies do you think have had MRI's, which showed lesions, AFTER they had been on a course of Flagyl? And, who's to know what caused what?
Thanks again for the reminder!
Posted by karenl (Member # 17753) on :
Interesting. My tingling and vibrations in the legs are almost gone since on doxy and flagyl. Take it about 3-4 weeks now. Especially doxy helped with tingling a lot.
Posted by chaps (Member # 25286) on :
quote:WildCondor, no offense, but you must have a body like a rock.
That's the understatement of the year. People reading these posts should remember that everyone speaks from their own frame of reference. I've known of people who were hopeless alcholics and drank enough on a regular basis to kill 3 people, and never had a problem. That certainly doesn't mean that everyone should go off and drink 3 quarts of bourbon a day and not expect to have liver problems.
Some Americans survived the invasion of Normandy. But many died on the beach, drowned or were killed by sharks before even reaching the beach. But you don't see the survivors posting on the internet how wonderful the experience was, what an invigorating swim it was and what a glorifying feeling the victory was and telling everyone else, you should try doing something like that if you ever get the chance!
When I look at the kinds of abx and the amounts that physicians are prescribing for Lyme I think these people are either out of their cotton-pickin' minds to be taking this stuff, or just really, really desperate.
I guess it's up to each individual to decide how dire their situation is and whether their willing to kill themselves (or seriously damage their bodies) trying to kill the bugs.
I wish that LLMDs were forced to provide statistics that show how many of their patients treated with abx got well, how many were not helped, and how many got worse. I'll bet the success rate is somewhere around 35 percent - if that.
Posted by lymewarrior03 (Member # 3891) on :
I had a terrible experience with Tinidizole. After 3 days of it at a high dose with Amoxicillin, I developed severe light sensitivity that never went away.
![[Smile]](smile.gif)
Another thing, slivers of pills makes no logical sense. Flagyl, when used properly will both open the cysts up AND kill them. Usually Flagyl works best when taken for 2 months straight at doses of 1,500 mg day or so and then when you switch to the pulse it is usually 500-750 mg 4x per day for 4 days on 3 days off 2 weeks in a row then 2 full weeks off. All of that is usually combined with other antibiotics to make it a more powerful drug cocktail. Love Flagyl!