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» LymeNet Flash » Questions and Discussion » Medical Questions » Please tell me your experiences with flagyl and it's side effects or herx effecta

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Author Topic: Please tell me your experiences with flagyl and it's side effects or herx effecta
Maya12
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Please tell me what you can about this drug and what it is used to treat for
Posts: 1632 | From Canada | Registered: Feb 2012  |  IP: Logged | Report this post to a Moderator
marshall62
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Flagyl (metronidazol) is a "cyst buster". Some doctors claim that it is one of the most effective Abx in Lyme treatment because it can open up spirochetes that have balled themselves into a protective cyst which is impenetrable to regular Abx. The chetes can stay in this form and resist all the drugs you throw at them.

The theory is that Flagyl opens the cyst and then the other abx that you are on can then attack the opened up spirochete and kill it.

Some doctors believe this only has been proved to take place in vitro and not in vivo.

I have been told Flagyl can cause nerve damage.

Typically people have a hard time with this med and thus take it for a burst of, say, a week followed by two weeks off.

Tinidazol is an alternative to Flagyl that may have less side-effects.

--------------------
bit: 11/05, tick Bb +
symptoms: 6/08
IGenX: IGm 31, 34, 41
HLA DR4
treatment: 9/09 doxy, ceftin, mino
tetra/biax/plaq, rifampin, amox, flagyl

Posts: 30 | From Chesterfield, MA | Registered: Dec 2009  |  IP: Logged | Report this post to a Moderator
Maya12
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What sort of neurological damage can flagyl cause is it like peripheral neuropathy or can it cause permenant mood disorders too? And how do you distinguish a herx from side effects?
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KYForester
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I take it 3 weeks on then 3 weeks off for 2 cycles then I am supposed to begin pulsing it. I am using it as a

cyst buster. I'm in my second round of being on it and I definitely feel better when I am off of it. It leaves a

horrible metallic taste in my mouth 24/7 and makes me feel generally yucky all over. I have not been on it long

enough to separate out side effects from a herx because I basically feel like im in a mild herx the duration I

am on it. That may be a side effect and the amount that I am taking 500mg 3x/day.

Posts: 45 | From AL | Registered: Feb 2010  |  IP: Logged | Report this post to a Moderator
marshall62
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Not sure about the exact neurological damage and whether its permanent. Numbness and tingling I've read. Of course, that's part of Lyme symptoms so it won't be easy to know.
Be methodical. Don't add Flagyl to your mix along with other new things. My guess is that nerve damage is something to worry about with long term use. So a couple of pulses as an experiment is probably not something you need to worry about.

--------------------
bit: 11/05, tick Bb +
symptoms: 6/08
IGenX: IGm 31, 34, 41
HLA DR4
treatment: 9/09 doxy, ceftin, mino
tetra/biax/plaq, rifampin, amox, flagyl

Posts: 30 | From Chesterfield, MA | Registered: Dec 2009  |  IP: Logged | Report this post to a Moderator
ESG
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adding flagyl then replacing it with Tindamax (so much gentler on the stomach but so much more expensive) is what changed everything for me - in that it started me on the road to feeling better, so I have to say I revere it.

When I started getting some tingling in my face, doc said add B12 - I did, tingling stopped immediately.

I took it 3 times a week but it made so tired that I had to take a nap after taking it, so I cut back to only twice a week. After a while that incredible fatigue lessened then went away.

Some people do say it affects their mood/emotions.

Posts: 424 | From Connecticut, USA | Registered: Nov 2003  |  IP: Logged | Report this post to a Moderator
ESG
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PS - I have been it so long that I do not notice it all all when I am on it, as far as how it tastes or how it affects me.

BUT I do notice it Lyme-wise if I am off it for long: it still makes a huge difference in helping me feel much better than I do if I do have it to take along with my Doxy, still as an occasional pulsing ABX.

In other words, it doesn't have negative effects on me, and yet it still helps me fight the remaining spirochetes that Doxy alone was not and is not getting.

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TF
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From Burrascano, page 15:

"METRONIDAZOLE (Flagyl) When present in a hostile environment, such as growth medium lacking some nutrients, spinal fluid, or serum with certain antibiotics added, Bb can change into a cyst form. This cyst seems to be able to remain dormant, but when placed into an environment more favorable to its growth, the cyst can revert into the spirochete form. The conventional antibiotics used for Lyme, such as the penicillins, cephalosporins, etc do not kill the cystic form of Bb, yet there is laboratory evidence that metronidazole will kill it. Therefore, the trend now is to treat the chronically infected patient who has resistant disease by combining metronidazole with one or two other antibiotics to target all forms of Bb. Because there is laboratory evidence that tetracyclines may inhibit the effect of Flagyl, this class of medication should not be used in these two- and three-drug regimens. Some clinicians favor tinidazole as this may be equally effective but result in fewer side effects. However, this has yet to be documented."


"Flagyl can be irritative to the nervous system- in the short term, it may cause irritability, "spacey" feelings, etc. Longer term, it can affect the peripheral nerves, causing tingles, numbness, etc. If mild, a change in dose may be required. Often, extra vitamin B can clear these symptoms. If the nerve symptoms persist or are strong, then metronidazole must be discontinued or these symptoms may become very long lasting."

Maya, I suggest you read the entire short section on flagyl in Burrascano. It answers your questions.

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Maya12
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I did read it tf but I don't know how to interpret it. I know in the short term it can cause the spaciness and depression etc and long term nerve probs , what does he mean by nerve problems? Is this just the peripheral nerve probs or is he saying it can also cause permenant mental and emotional probs or permenant confusion and spaciness ?
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Keebler
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-
As with nearly every single Rx for lyme & co., support methods can make a huge difference in tolerance.

"Often, extra vitamin B can clear these symptoms." (Dr. B.)

Liver support would also be very important but also other nerve support. It's a good idea to start the support plan before the Rx, when possible.
-

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TF
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He says: "Longer term, it can affect the peripheral nerves, causing tingles, numbness, etc."

So, the peripheral nerves are what can be affected longer term. You can get tingling and numbness in your extremities.

So, if this happens to you, he says to lower the dose. Also, add extra vitamin B.

My doc had me take sublingual vit. B (under the tongue) when I had some of this. It worked right away and the problem went away.

I took flagyl for 60 days straight. That's how I got rid of lyme disease. (Took high dose amoxi--with probinecid-- and then added in flagyl.)

The first paragraph of the Burrascano quote tells you that the regular meds used for lyme do not kill the cyst form of lyme but there is laboratory evidence that flagyl WILL kill the cysts.

You won't get rid of lyme until you attack the various forms of lyme simultaneously.

"Therefore, the trend now is to treat the chronically infected patient who has resistant disease by combining metronidazole with one or two other antibiotics to target all forms of Bb."

You have had lyme for a long time, so you definitely need a med that can kill the cyst form of lyme. That is based on my experience. I had undiagnosed lyme for at least 10 years.

I don't think it serves you well to stress out over all of the lyme meds and want to look into all the bad that can happen.

I believe that lyme anxiety causes people to think this way and worry excessively. So, it is a lyme symptom and it is not easy to live with or to overcome. I have read that the lyme patients that do the best are those who do not excessively stress out or worry about possible negatives. So, you may want to decide not to dwell on or spend time on the negative trains of thought. Rather, it is healthy to have positive thoughts.

For example, "I am now killing lyme disease. I am stopping this disease in its tracks. I am going to eat right and help my body fight this disease. etc."

These meds are used to treat many, many diseases. They are not poisons. I was given flagyl for a number of weeks when I got "traveler's diarrhea" many, many years ago (about 30 years ago) in Africa from accidently drinking some of the local water. It worked immediately and wonderfully. I consider flagyl a wonder drug.

American doc was impressed with that use of flagyl, by the way, as it had not been used for that yet in the U.S.

So, just know that flagyl, levaquin, and all the other meds the lyme docs give (except maybe Mepron) are commonly used antibiotics that are given to many, many people for many ailments.

My experience on flagyl was that I had a herx on about day 3. It lasted for about 1 week. The first 3 days were "half bad" and the next 4 days were not too bad at all.

My doc told me that my previous lyme treatment had converted all of my lyme to the cyst form. So, that wasn't a bad experience considering. I may have even gone to work that entire week. Pretty sure I did.

But, as you will be told over and over again, everyone is totally different. I drank lots and lots of water with lemons squeezed into it. So, I detoxed that way continually.

I ate the anti-yeast diet. Any time I broke the diet while on flagyl I got a yeast infection in my mouth, gut.

Burrascano warns about that. Also see warning not to drink any alcohol or use any mouthwash, etc. that has alcohol in it or you can have a strong antibuse reaction.

I took diflucan for a few days and the yeast went away (plus cleansed the mouth as per Burrascano).

So, you better be perfect regarding diet while you are on it, or you will get yeast.

Really, you can learn so very much by just reading what Burrascano has to say. Just read one sentence slowly. Then, after your brain has digested that, move on to another sentence.

Posts: 9931 | From Maryland | Registered: Dec 2007  |  IP: Logged | Report this post to a Moderator
koo
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I took Flagyl for the first time 60 days into treatment after a course of azithromycin. About 7 hours after my first dose holy moly I herxed like no other. Anxiety like crazy, I was walking in circles, heart palps, BP elevated, temp elevated. It was so bad I got ready to go to the ER.

Then I noticed those symptoms started to wane. This was the drug that helped me turn the corner. I have been on it several times since with never that horrible reaction again. I suppose I just don't have that heavy of a bacterial load anymore to cause a response like that.

I tolerated it fine over the past year, no unusual side-effects.

Posts: 478 | From Third Coast | Registered: Feb 2011  |  IP: Logged | Report this post to a Moderator
   

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