I *just* started adding Flagyl to my biaxin this past week - both still in tiny doses, hoping to ramp up.
Today - tummy ache, no hunger, bone-crushing fatigue, more pain and what's worse, feel horribly depressed (unusual for me).
What's up? Can't imagine how I would feel if I continued...no input from doc. Does it get beter? Anyone else's experiences good/bad and feedback with flagyl would be welcome!
Posted by darla135 (Member # 15688) on :
Yes, flagyl can be very rough! When I first started taking it my back would hurt tremendously, especially up and down the spine, and I would become very anxious and irritable.
Pulsing it can be helpful, if you are already not doing so - 10 days on, 10 days off. I find that over time I do not get as irritable and it lasts for shorter periods and the pain is not as intense. Hope you can endure because your symptoms most likely mean it is working for you.
Be sure and stay in touch with your doc if the intensity is too much - you may need to start on a lower dose.
Posted by btmb03 (Member # 18394) on :
Darla, Amanda, very helpful input. Actually I don't know if you consider every other day 1/4 dose pulsing but that's what I'm doing..I'd be nuts to even imagine I would try 250 mg twice a day!!
Me too..very emotional, crying. Doc refuses to consider Tindamax, saying there is no difference.
P.S> Amanda - what kind of neuro probs did it give you?
[ 04-04-2009, 09:02 PM: Message edited by: btmb03 ]
Posted by TadichGrill (Member # 19679) on :
Tindamax is known for being easier to tolerate. You are the paying customer so demand your MD switches you to Tindamax.
Posted by lymeHerx001 (Member # 6215) on :
some it gives a terrible herx, with me nothing but clean colon and clearer head
Posted by Snailhead (Member # 18091) on :
Hi, I felt absolutely phsycotic (sp) on this med. I am not a whimp, but I felt so spun up and crazy I actually called my husband and said "come home now." Along with other increase in symptoms. This was after four days. My dr. yanked me off. I have heard of people just using "slivers"; I, too, only took a quarter of the med.
Posted by btmb03 (Member # 18394) on :
Snailhead - so sorry you had this reaction. Would "slivers" *really* help? - and if people can't tolerate flagyl what do they do?
Posted by baileygirl (Member # 19658) on :
Ok, now I am really scared to take this! I am supposed to take it 2x a week and I start Monday. I am supposed to take 250mg 3x a day. Should I do less the first day? Since I am only on it two days will it be that bad???
Posted by btmb03 (Member # 18394) on :
I guess it's a personal call Baileygirl, some people do perfectly fine on Flagyl - I personally know someone on a big dose daily and he's fine on it.
Don't be afraid but do start with a tiny dose for a while and see how you do, then start ramping up very slowly. Good luck!
Posted by adamm (Member # 11910) on :
Nothing I've read has really sold me on cyst busters. Seems like the incidence of toxicity is too high...
I have 250mg pills. I can cut them, right?
Posted by btmb03 (Member # 18394) on :
that's what I did but check with your pharmacist
Posted by sutherngrl (Member # 16270) on :
When I was on Flagyl I would take it and 4 hours later... Wham! It gave me even more fatigue than I already had. It was very rough on me. Seems like after a while it wasn't as bad. Or maybe I just got use to it, or it was just a herx reaction. I took 500 mg a day.
Posted by feelfit (Member # 12770) on :
Flagyl started all of this stuff for me...I took it for a female problem and all hell broke loose.
It also gave me photosensitivity and a 9 day migraine. I took it for a week.
Posted by CherylSue (Member # 13077) on :
First of all, make sure it is the Brand name Flagyl, and not the generic. This has been discussed on other Lyme boards.
Secondly, take a sliver or 1/4 pill and ramp up slowly. My LLMD is very okay with this. A little bit is better than none.
Flagyl makes me tired, even at 1/4 pill. I take 1/4 pill twice weekly.
Yet, some people do great on it, and can take higher doses off the bat. Go figure.
CherylSue
Posted by baileygirl (Member # 19658) on :
All I have is the generic. What am I supposed to do?
Posted by TadichGrill (Member # 19679) on :
Doc Dave has an interesting theory about cyst busters. He says the lyme cysts if I recall correctly are like when herpes goes into hiding. The last thing you want to do is get it to come out of hiding.
His theory makes sense to me.
Posted by seekhelp (Member # 15067) on :
Has anyone here ever went into remission w/o taking a cyst buster?
Posted by btmb03 (Member # 18394) on :
Before I became ill I used to a) rarely be on any meds and b) never reacted this way in my life.
I think I'll skip the ramping-up experiment and keep to a sliver..thanks everyone for your responses!
Posted by Geneal (Member # 10375) on :
My LLMD had me ramp up on flagyl.
I started with the generic too.
I started with 250mg once a week.
Then 250mg twice a week.
Then up to 3 days same dose.
Next weekend it was 500mg each day for 3 days.
Then up to 750mg on Friday, Saturdays and Sunday.
I still take 750mg once a week to prevent c.diff.
You can ask your pharmacist for flagyl and not the generic.
I did much better on flagyl than the generic.
Plus the 750mg was one pill in an extended release formula.
I remember the headaches from heck.
Tindamax gave me the worst stomach pain ever.
So.....slow and steady.
Call your LLMD and tell them how you feel.
I didn't do flagyl for at least 3-4 months into treatment.
Hugs,
Geneal
Posted by btmb03 (Member # 18394) on :
I wonder why the brand-name might be better than the generic which I also have. Anyone know why?
Posted by baileygirl (Member # 19658) on :
Geneal - do you remember how you felt taking it once a week? Especially the first time? Reading all these posts makes me super nervous. I am supposed to take it Monday and Tuesday. I am afraid I will have a horrible reaction and I will be home with my two little girls. I have only had a mild herx and it was fatigue. It lasted a couple of days. All this is helping. Thanks.
Posted by mark kennedy (Member # 17426) on :
I was on flagyl 500mg 2x a day for about 2 months. I actually tolerated it pretty well as long as I had a bit of food with it. But in the last 2 weeks I started getting really bad headaches and fluish feelings almost all day. I also got what my doc called hairy tongue from it despite lots of probiotics. Not the most appealing thing. but he said it would go away in a few weeks. He now has me off both flagyl and doxy for awhile. Its been 3 days and my headaches are back to what they normally are. Never thought I would welcome them. I think its just important to communicate well with your doc as the various drugs affect everyone diffently.
Posted by Cass A (Member # 11134) on :
Flagyl, many years ago, gave me transient global amnesia--meaning I found myself sitting at work, didn't know where I was, who I was, what I was doing, what I was holding in my hands, how I was even sitting up.......
Please get into communication with your doctor about what you're experiencing.
Best,
Cass A
Posted by LisaS (Member # 10581) on :
Added Falgyl to Zith last week. After four days I had to stop. Started getting those dark suicial thoughts. Now I'm going to try to start again only this time with omnicef. It seems to be the only drug I can handle anymore. And even that makes me twitch.
Posted by btmb03 (Member # 18394) on :
Thx for your input everyone, I'm so sorry Lisa you've had such terrible sx on Flagyl. Good luck with the Omnicef.
I am definitely going to give my body a few days off flagyl and re-start with a sliver.
Posted by Parisa (Member # 10526) on :
My husband took IV Flagyl 500 mg (I believe) two times a day without a problem. He made great progress on it. Everyone seems to react differently.
Posted by WildCondor (Member # 434) on :
Stick with the Flagyl and Biaxin, it's an excellent protocol. The depression is from the meds, and its normal, and im sure you have a bad taste in your mouth too, all part of it. This combination is really good though so stick with it.
Posted by lymeHerx001 (Member # 6215) on :
Ive read somewhere that not only does flagyl bust the cysts, it slows down the bacteria.
THIS IS A GOOD THING.
The lyme bacteria moves quicker then our own cells. That could be one reason that some dont get better.
Posted by btmb03 (Member # 18394) on :
Thanks everyone, esp WildCondor having "been there and done it".
Good idea to try the brand name vs generic. Taste isn't too bad even though I split the tabs, it's more stomach issues now..I suppose a small/minute dose is better than nothing, right?
Posted by joss (Member # 13263) on :
I just picked up the generic and am now very concerned about whether I should take it....has anyone had a good experience with the generic?
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by baileygirl: Should I do less the first day? Since I am only on it two days will it be that bad???
PERSONALLY, I would!!!
Flagyl makes me tank. It was a great med for killing cysts... but very difficult to take. I usually got severe depression from it.
It helps to tell yourself it's "just the med."
The only way out is through.
Posted by bettyg (Member # 6147) on :
i had a terrible herx on flagyl after 4-5 days; quit it promptly, and it happened here on the board.
Posted by Hoosiers51 (Member # 15759) on :
I wonder if people without Lyme can take Flagyl and not have problems with it? Anyone know?
Or can it cause weird amnesia-type stuff in even people without Lyme (if we did know for sure who had it and who didn't, etc)?
Posted by baileygirl (Member # 19658) on :
My 5 year old daughter had a c. diff infection and she took it. 250mg 3x a day and it wasn't a big deal. The only complaint she had was the bitter taste since they had to make it into a liquid for her. I took a 1/4 of a tablet today. That was at 5:50am and so far so good. I am super tired but my daughter is sick and I have not been sleeping much.
Posted by btmb03 (Member # 18394) on :
Hoosiers, I mentioned earlier I personally someone who is on 250 mg bid + biaxin and he has NO probs with it at all. And he's not exactly "corpulent" so yes, there definitely are people who tolerate it well.
I can't tell if it is the flagyl (didn't take today's dose but have hangover from last dose) or biaxin but brain definitely worse - reversing words, difdficulty remembering stuff, even diff thinking. Feel like someone's given me a sleeping pill (I don't take any).
Posted by bv (Member # 9578) on :
If you cannot take flagyl and/or have a difficult time on it---ask your doc about Alinia.
I used alinia as a cyst buster for quite awhile--it was a lot easier to take---only side effect i noticed was that it turns all your bodily fluids a radioactive yellow---that goes away w/i 5 days of stopping the drug.
Only other downside is cost---$20 per pill, which is quite expensive.
Posted by btmb03 (Member # 18394) on :
Thx so much for the info on Alinia - glad you found it helpful...did you take it along with say biaxin or on it's own?
Posted by Blackstone (Member # 9453) on :
Tindamax is known to be the same effectiveness as Flagyl, but with less symptoms. See if you can get ahold of it.
Those two show more evidence than Alinia in cyst busing, but Alinia is much easier to tolerate. Just be warned that some LLMDs don't believe in Alinia's use for that reason.
Posted by baileygirl (Member # 19658) on :
Well, I took a 1/4 dose this morning. It felt fine. When it was time again, I just took the full 250mg pill. I feel crappy right now but I am running on a few hours sleep with a sick little girl. How long before I might feel the effects since I am only on Flagyl 2 days a week?
Posted by Meg (Member # 22) on :
My flagyl was from Mexico--2 different kinds, neither one a brand name.
I had terrible depression with each of them, but they worked well.
There are those who can take it and have no problem whatsoever....I don't trust those kind of people
Just remember, the depression can be a suicidal type.....back off or discontinue if this happens and contact your Doc.
Posted by btmb03 (Member # 18394) on :
Blackstone, appreciate your input - what dose of Tindamax did you start at and what dose is considered "full dose"?
Posted by Blackstone (Member # 9453) on :
I believe I was taking 500mg Tindamax either once or twice a day. Unfortunately, the doctor I was with at the time "just found out" about Alinia, so he didn't keep me on Tindamax very long.
Posted by btmb03 (Member # 18394) on :
Baileygirl, sorry I just saw your post. Sorry to hear about your first experience with flagyl. You might want to ask your pharmacist how long it remains in your body.
I rely on my pharmacist, he caught a drug interaction the doc didn't...I hope as the day goes on you start to feel a bit better and are back to pre-flagyl state tomorrow. Take care!!
Thx Blackstone, will ask the doc about both drugs.
![[Frown]](frown.gif)
but he said it would go away in a few weeks. He now has me off both flagyl and doxy for awhile. Its been 3 days and my headaches are back to what they normally are. Never thought I would welcome them. I think its just important to communicate well with your doc as the various drugs affect everyone diffently.
![[Wink]](wink.gif)