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For those who have used tinidazole or are currently using it

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Posted 1/18/2015 1:00 AM (GMT 0)
I got a symptom that I believe is related to the tinidazole but I just don't know for sure. The only times I got the symptom was upon using the tini back in April I got it. And I am getting it a little bit again.

It is like a kind of tingling feeling that sometimes goes steady in my brain. In particular I feel it most in the top areas of my brain close to the scalp.

Has anyone else experienced this? Is it related to the tini or something else?
Posted 1/18/2015 6:30 AM (GMT 0)
I've had that before but I think it was before I started treatment. I'm on Tindamax now. Started back on it 8 days ago.

I was on it before and if my memory serves ( we know that's iffy but I think this is right) my LLMD said when he first put me on it "let's work on your brain now". If that's correct than it's possible what you are feeling is a die off.

I do know that it definitely helps with my head. The difference in the last 8 days has been very obvious to me.

Call your Dr to double check on Tues.
Posted 1/18/2015 7:24 AM (GMT 0)
LP - Im starting Tini in a week or so - two days a week - added to Ceftin and Biaxin.

I get tinglies on my scalp - dont know what its from. And last nite when I was in bed I woke up and moved my head on the pillow and my scalp hurt.

Lyme has got to be the freakiest disease - how do we stay sane with these bizarre symptoms? and we just live with them day after day.
Posted 1/18/2015 10:28 AM (GMT 0)
Y'all are sane? I'm jealous. :s

Kidding of course. Good luck with all that.
Posted 1/18/2015 4:09 PM (GMT 0)
It really is the freakiest disease. I'm taking Ceftin and Flagyl, but want to switch from Flagyl to Tinidizole. Nerve pain through the roof with Flagyl and depression is scaring me - suicidal thoughts fly uninvited into my brain. Have any of you been on Flagyl? Is Tinidizole easier?
Posted 1/18/2015 6:06 PM (GMT 0)
I was on Flagyl prior to being diagnosed with Lyme disease - for another 'issue'.
I didn't have any side effects.

My Dr. thinks Tinidazole works better than Flagyl...I'm hoping I see some improvement once I start it in a few days.
Posted 1/18/2015 9:22 PM (GMT 0)
Girlie... If you got the tingles and didn't take tini yet. Then it's probably related to the infections.

My guess at this point is bart. Well I guess I need to prep my body for a 12 month course of rifampin! Lol. If it's not bart, then it's mycoplasma and in that case ... That really sucks because how the heck am I going to get rid of that! Lol. No seriously I think mycoplasma is probably the hardest one of all to get rid of. I'm hoping it's bart as that one is easier to treat.
Posted 1/18/2015 9:25 PM (GMT 0)
Arkansas... Tinidazole has proven to be hands down the better drug for lyme. Flagyl just has a longer history and doctors started using that one for lyme first. Flagyl is also more readily available.

Tinidazole is the better lyme drug though between the two. Many doctors agree with the response in patients, and the research also shows it to be more effective.
Posted 1/19/2015 7:38 AM (GMT 0)
I currently pulse with my Tini two consecutive days a week, twice a day. I haven't had the tingling in my scalp but I have had it on my arms and legs on the days that I take that medication. I'm guessing it's just another fun symptom of herxing that we have to deal with, unfortunately. When i feel the tingle I just picture the antibiotics in there kicking ass and that's what making me tingly! haha That visual helps sometimes :) The days i take Tini are always my worst days and for about 4 days after. I usually get one day of my symptoms being tolerable and then it's time for my Tini again.
Posted 1/19/2015 1:12 PM (GMT 0)
I took tinidazole before christmas for 3 months, pulsed with amoxicillin and clarithromycin. Of all my treatment protocols, I feel that this one had the most effect. I got headaches and felt groggy while taking the tinidazole, but my head - which is permanently fuzzy/dizzy/tingly - felt a little clearer afterwards. I felt that the headaches may have been herxes? I felt that the tinidazole may have actually been hitting something. I'd quite like to go back on it again, but don't know if that's advisable or not?
Posted 1/20/2015 1:46 PM (GMT 0)
I've been on Tinidazole since January 12 (along w/200 mg of Minocin) and haven't noticed any new side effects or issues. My pain has definitely diminished. Biggest issue for me is extreme fatigue/exhaustion. Has anyone else experienced this? Thoughts?! I'm taking Gingseng along with a few other supplements as well.

Have a great day!

:-)
Posted 1/20/2015 2:24 PM (GMT 0)
I'm so stressed about this. Andrew is planning to go back to school next Wed. after quarterlies. As you all know, he's been through a lot. He has not gotten the cyst buster yet, and this was a bad week for him - as was the time around Thanksgiving - fits the 6 week cycle. His sleep is flipped again and he may miss home instructions today which will mean he is behind. He is so depressed and lonely, most things have gone away. Tics, raging, ocd, odd, etc. But this week the tics were back a bit and something in his head that he won't tell me what it is. He holds his head and ears for a while. Not sure what that is.

But the Tinidazole I'm not sure when the dr. is going to give him that and I'm panicked he'll be right back out of school. I'd rather he just stay out and not have his hopes up.

His computer addiction is so bad. I was planning to take it all away today and hide it so he starts SAT study, his eagle project, actual study for quarterlies.... oh my.

He said yesterday he was getting better, so the next 6 weeks should be ok, but then crash - and I'm sure his brain needs the cyst buster to finally clean it all up.

LP, you are kind of freaking me out - I thought you were well!!!!!!!!!!!!! Now it's hitting you again? Oh my. I"m sorry for you and nervous for Andrew!
Posted 1/20/2015 3:19 PM (GMT 0)
Lovemychildren - I am well!!! lol , no really I am. I'm about 95% how I felt before but I'm just simply not 100% recovered. There are still some minor symptoms and issues that come and go. My cognition is 100% normal though. And I can function like I did before my illness. Again I think it's bartonella that is causing my lingering issues. I'm nowhere nearly as sick as I was in December-March of last year. Maybe I'm just too nitpicky about symptoms.  I'm willing to bet if some people were in my state of health they would consider themselves recovered. 

I think adults can report their symptoms better than younger people can. I'm not going to say I'm a 100% well until I really am. It might still be another 6-12 months to get that last 5% of recovery.

Post Edited (LymePickle) : 1/20/2015 8:24:59 AM (GMT-7)

Posted 1/20/2015 4:58 PM (GMT 0)
Ok, whew! Had me a little on edge there! But thank you for this. When he starts on it, I will know to tell him not to worry if he has sensations like that. He really doesn't need more to freak him out too - he's already got enough of that!

I think you are right about reporting symptoms. I guess young people have it hard enough with hormones let alone all this on top of it.

I don't think you are nitpicky, I would be the same way. My hand nerves are still not good from my surgery in April and it's really bugging me. I thought I'd be ok by now. The dr. said I could have him take out the plate and screws "later" and I'm wondering if I should or if the nerve pain is just something I'll always have to live with. So, I get it, we all want to be 100%1

Hang in , I know you will get there.
Posted 1/21/2015 3:36 AM (GMT 0)
LymePickle. the sensation in the head I had it pretty much before abx....first set of abx, it got worse, then went away...then every time abx got changed or herbal got added / removed, the pain in the head will come back....now it's very minimal. I think in the beginning, it's the bacteria itself. Once the treatment started, each episode was the die-off which was really bad in the beginning of the treatment. Now, I rarely have it and it's very minimal (knock on wood).
Posted 1/21/2015 3:43 AM (GMT 0)
Staceygar- Since I started treatment my fatigue has been debilitating again and it's even worse on the days that I take my Tinidazole. I just listen to my body on those days and let it rest as much as it needs to. I know that doesn't help in terms of advice of suggestions, but sometimes it helps me just knowing that other people are experiencing the same things :)
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