Flagyl has just been a nightmare for hubby. First couple of weeks on it, things seemed okay. He was doing better! Then he crashed. Now I feel like he's in a herx that is never going to stop.....
Doing lots of water, green tea, etc to try to flush the toxins out. How long will this last?
Face is bright red, had blurry vision today a couple of times. That usually clears after a few minutes.
So frustrated.......kind of scared.
Posted by AZURE WISH (Member # 804) on :
There is no way to tell how long a herx will last.
My only advice is if things get bad or go longer than he can take please call ur llmd. Some docs lower the dose af abx till the herx has cleared.
Sorry he is going through so much. I know this disease and herxing can be scary but hang in there
sending healing thoughts his way
Best wishes
Posted by Boomerang (Member # 7979) on :
Thanks. I'm just so frustrated. 8 1/2 months of ABX, and I feel like we are back to square one, after such a good initial response.
I guess we have to realize each Herx means a die off of bacteria, but it's so difficult.
Take care all. Thanks for any input.
Posted by seibertneurolyme (Member # 6416) on :
Flagyl is a very very liver toxic drug -- I remember one doc telling hubby if you let a Flagyl pill dissolve on your tongue you will know what poison tastes like.
My suggestion would be to just stop the Flagyl for a few days or even a week. Hubby is extremely sensitive to this med -- can only take 1/4 or sometimes 1/2 pill per day and only for a week or two at a time.
The bright red face does not sound good. Is this a new symptom? Does he have high blood pressure?
Do know that Flagyl can cause nerve pain, but can't remember right off about vision problems. Is the problem with his eyesight new as well?
I always worry more about new symptoms than old ones coming back -- hard to tell sometimes what is a drug side effect.
Got to go for now.
Hope he gets to feeling better soon.
Bea Seibert
Posted by HaplyCarlessdave (Member # 413) on :
Metronidazole is pretty rude stuff! Another antibiotic with a similar function but not as hard to take side-effect-wise, is called tinidazole.
I asked my doc about this. It's a little tricky to get. My doc sent the prescription in to Hopewell Pharmacy, in New Jersey somewhere, I believe. Then I called, and arranged payment, and they sent the tinidazole to me. Hopewell is, I think I recall, what they call a "compounding pharmacy
Tinidazole was very effective in my case. I took it along with clarithromycin ('biaxin')
DaveS .
Posted by luvs2ride (Member # 8090) on :
Don't forget the cure can kill too.
I wouldn't take any severe herx lightly and I would proceed with extreme caution where dangerous drugs are concerned.
There are safe and effective alternatives to dangerous drugs that lower the bacteria more slowly and strengthen the immune system and the vital organs at the same time.
People think drugs are the only successful tool, but look how many have been on drugs for months and years and are still sick on this board.
Don't kill yourself in an effort to get well.
Posted by treepatrol (Member # 4117) on :
Usually the longer you have had lyme the worse the herx at least it was bad with me. And they seemed to take a few rounds before they subsided he may have had a couple of strains.
Posted by Michelle M (Member # 7200) on :
Hi Boomerang.
Your hubby's the guy with the monster headaches, right?
So sorry Flagyl is being hateful to him.
I hated Flagyl also.
I was on it for six weeks and I swear, it didn't let up until about the last two days.
And I wasn't even on the highest dose you can be on - I think I was just on 500mg a day.
Miraculously, following the course of Flagyl was a long period of good head days I haven't been able to replicate since.
Make sure your LLMD knows how poorly he's doing, keep up with regular bloodwork, consider backing down with doctor's OK. It's a tough med but sometimes a real light at the end of the tunnel.
Sending a good thought to you both,
Michelle
Posted by Boomerang (Member # 7979) on :
Yep......hubby is the one with the "intense brain pressure"....at least that is how he describes it.
The "blurring vision" thing has been an issue for him also. He seems to get the blurred vision when he starts a new ABX. And he's the guy who doesn't read up on all of this stuff, and I don't talk to him a lot about it. (Try to avoid the power of suggestion type thing).
Flagyl was rough on him........just a tiny sliver brought some rough reactions. He gets the intense red face when he has a herx.
Thanks for all the input folks!
Posted by Jillybean (Member # 8071) on :
Flagyl is some potent stuff. I was taken off all abx and sent to neuro after almost 4 months of IV Rocephin combined with 1500 mg Flagyl daily. I have developed peripheral neuropathy in my feet, a little in my fingertips, and my LLMD is not sure if it was caused by the Flagyl, the Lyme, or something else.
All I know is it's been almost 2 months of excruciating pain in my feet, and back doing the duck shuffle to try and figure out what must be wrong with me. My LLMD is trying to tell me that my positive ELISA might have been a false positive. WHATEVER!
Sorry to vent, but I am so frustrated!
And I guess my point is: if he experiences any numbness, tingling, etc, call LLMD immediately! My neuro is afraid mine is permanent. Flagyl is known to have this side affect.
On the positive side, I also recovered neurologically, and have felt the best I have in a very long time. I just wish I had complained about the feet earlier (actually I did, just to the nurse).
Best of luck, and healthy healing, Jilly
Posted by Aniek (Member # 5374) on :
My LLMD reduced my Flagyl because of the strong reaction I was having.
I had severe pain when on Flagyl, to the point that I was missing lots of work. I had brain fog for the first time ever, although it might have been attributed to increases in Vicodin. I also had an increase in my motor tics.
I was taking it for only one week, then off for two weeks. Now I'm only on for 3 days, then off for two weeks. Taking 300mg twice a day when I take it.
A bad herx can be detrimental if it causes too much stress on the system. It's like a marathon, if you keep running hard on a strain you may collapse before you finish the race.
Posted by Boomerang (Member # 7979) on :
Thanks for all of the input! Much appreciated.
Hubby has been on break for a few days..... I talked to the LLMD and they wanted him to start the Clin/Quinine combination. He took that a couple of days, and think we started that too soon.
He's on a bit of a "break" at the moment. . Seems to be doing a bit better.
I'm wondering if he shouldn't just try the doxy again...... I dunno.
Posted by spiral (Member # 9217) on :
remember -- no one is sure how any of this works. many of these meds have severe side effects -- so is it a herx or a bad side effect? Drugs can be dangerous. Be careful while being agressive. Speak with your dr who prescribed the med immediately when something changes so dramatically.
Posted by liz28 (Member # 4946) on :
My flagyl herx lasted at least two months, and your description sounds familiar.
You can pulse it on a four-day-on, three-day-off schedule. You may also wish to explore using a mild, safe anti-inflammatory.