At my last visit, my LLMD said Flagyl is too dangerous. She made it sound like she does not prescribe it.
Will I get better if this is not used at some point in my treatment? Is there something else out there like it that's safer?
Posted by laura j (Member # 14257) on :
Hmmm....How far into treatment did you start Flagyl?
Do they usually wait awhile?
Posted by cactus (Member # 7347) on :
Tindamax is also a cyst buster, so that may be another option for you. Maybe your LLMD has that in mind for the future?
Personally, I think a cyst buster is necessary. My LLMD didn't start me on a cyst buster till I had been in treatment for some time, though, and thankfully so - not sure I could have handled it till my bacterial load was lower.
I use Tindamax, btw. I pulse it for 5 days each month.
Flagyl gave me more problems with peripheral neuropathy than I had to start. Hopefully tindamax is doing the job.
Posted by adamm (Member # 11910) on :
Yep, the neurotoxicity of all the cyst-busters is well-documented.
I don't think I'd take one unless I saw some strong evidence
that the cured Lyme, and currently, virtually no research is
being done
into our protocols. So.... Posted by randibear (Member # 11290) on :
uh, what's wrong with flagyl? my gastro put me on it for c. difficile but it sure worked on my lyme.
after a migraine for four days, my head really cleared up.
i was sorry he would not prescribe it again, but he wouldn't for the difficile and he doesn't believe i have lyme.
Posted by WildCondor (Member # 434) on :
Ask the doctor why! Flagyl was absolutely essential for me to get well. It causes the hardest herxing of all the drugs I was on, and also gave me the most improvement. You can use it as pulse therapy, so it would not be taken daily. Ask the doc about that. All drugs are dangerous. She may be thinking elevated liver enzymes, which can happen with Flagyl and a ton of other drugs too. I think the danger of not treating Lyme properly far outweighs any risk of Flagyl, that's just my experienced, non-professional opinion though.
Posted by Geneal (Member # 10375) on :
Prior to going back on babesia meds,
I was pulsing flagyl and doxy.
Took doxy Mon through Thurs.
Took flagyl er 750mg on Fri, Sat, Sun.
My neighbor did this for 10 months . She is a RN.
I did it for 3 months and other than headache and herxing,
My liver enzymes stayed the same.
I did better with flagyl er as 3x250mg pills gave me insomnia.
Plus any time I have to take one pill over 3....no brainer for me.
I believe the toxicity threat is real, but the doses were much higher and sustained for
Extended times.
I tried the tindamax too.....Yuck.
Hugs,
Geneal
Posted by Clarissa (Member # 4715) on :
5-years ago, my LLMD at the time avoided Flagyl with me because of my tendency towards depression.
Not sure if that helps you...
My present LLMD will probably put me on Tindamax at some point.
Posted by laura j (Member # 14257) on :
Hi everyone!
The reason she gave (and I'm not sure if this is the proper term) is the neuro-toxicity or peripheral neuropathy. She said this can be irreversible. Maybe she would pulse it though or try one of the other cyst busters.
She also wants me to take grape seed extract which I read somewhere can be a cyst buster.
I am fairly early on in treatment so I think it will be awhile if she tries any cyst busters.
Posted by CherylSue (Member # 13077) on :
Do you mean grapefruit seed?
CherylSue
Posted by laura j (Member # 14257) on :
I don't know. I'm confused.
Does grapefruit seed work?
Posted by je (Member # 14653) on :
I had a pretty crazy reaction to flagyll. I was really excited cause i THOUGHT i WAS HERXING sorry caps lock, not emphasis. But then I noticed everything I was feeiling matched everything On the list of overdose symptoms. Called the doc and he pulled me off of it roght away.
I really want to go back on it cause it seems like it should work. Tried to convince the doc that the dosage was wrong but no go.
Thinking about sneaking slivers
Posted by Keebler (Member # 12673) on :
Tindamax - 3 abstracts (the 2 relevant ones have no abstracts.)
cyst-busters, neurotoxicity - zero
cyst-busters - zero
cyst-buster - 2, but not relevant to Bb.
--
grapefruit seed extract - 25 abstracts
Here's the one we are looking for, but no text. Somewhere I saw the article, I thought.
-
Brorson O, Brorson SH.
Grapefruit seed extract is a powerful in vitro agent against motile and cystic forms of Borrelia burgdorferi sensu lato.
Infection. 2007 Jun;35(3):206-8. No abstract available.
PMID: 17565468 [PubMed - indexed for MEDLINE]
-
Posted by lymewreck36 (Member # 4395) on :
Hey. I haven't posted for awhile.
I took flagy daily for 6 months, and I did end up with very treatment resistant neurpathies. It also killed my insides.
It has been two years and just now starting to get better from the flagyl damage. Pulsing it is better, but be very careful.
Flagyl is a wonderful lyme treatment. Just listen to your body, and stop taking it if you suspect nerve damage.
Mary
Posted by maureen2174 (Member # 11471) on :
My LLMD told me the same thing when i asked about cyst busters- she said she didn't want to put me on flagyl.
she said i was on a cyst buster when i took plaquenil, but have heard from others it is not all that powerful.
i would love to try a natural cyst buster that wouldn't interfere with my zith/mepron.
Posted by von (Member # 8333) on :
For me it is to dangerous NOT to take it.
I am generally very conservative. One must weigh both the benefits and risks.
It is the only thing that keeps my symptoms down. I take it in combination with Zithromax, and have been on that combo for 8 months. I dropped the flagyl a few months ago, and within two weeks I started having fevers weekly again.
I let this go on for about 6 weeks and then went back on flagyl. within a few days, no more fevers.
I take 500 mg 2X per day the first four days of the week. (pulse)
I guess this works because of the slow reproductive life of lyme
Posted by sixgoofykids (Member # 11141) on :
I have been on Plaquenil for my whole treatment of over a year. I took four months of Tindamax at one week per month. I would go from feeling 95% of normal to 50% on the Tindamax. So, the Plaquenil may have done some cyst-busting, but not like the Tindamax.
We have switched me to grapefruit seed extract (GSE). I can tell it works because I have had to ramp up slowly. I bought the kind that comes in drops, and I'm only up to 7 drops twice daily.
We might try the Tindamax later, but for now, we're beating it down with the GSE.
We didn't add the Tindamax to my treatment until I had been treating for about 9 months.
Posted by laura j (Member # 14257) on :
Hi everyone,
Does anyone know if there are any risks with grapefruit seed extract? I think this is the way I want to go.
Also, do I need to be further along in treatment before I start it?
I officially started treatment Oct. 30 with 6 wks. of Doxy, then 8 wks. of Ceftin but at only 1/2 the dose b/c couldn't handle the full dose and I've now been on Zithromax for 5 days and am almost up to the full dosage.
I did have some accidental treatment last summer also for sinus/ear problems before being diagnosed with Lyme. 2 wks. amoxicillan and then 3 wks. Bactrim.
Posted by laura j (Member # 14257) on :
......and is Tindamax less risky than Flagyl?
Posted by Keebler (Member # 12673) on :
-
Grapefruit seed extract can be irritating to GI tract if taking a DROP or two in a glass of water.
There are capsules which can still be a bit irritating, so be sure to get a doctor's guidance on exact method, dose and frequency . . . and if with food, etc.
-
Posted by mjo (Member # 7876) on :
I agree with your LLMD. Flagyl is dangerous for some people, others do just fine. Judging the risk is difficult.
I am still suffering what appears to be permanent damage from taking less than one 250mg pill. (I took eighths and quarters over the course of three days, not even totaling one whole pill. On the third day, the mother of all herxes and horrific anxiety attacks struck me down. I have yet to recover all I lost that day in 2005.)
Condor, I wish you would have added that your LLMD also had to have you on other meds to cope with the severe reactions caused by Flagyl.
Also, Flagyl given too early in the course of abx is a no-no, too hard to take for many.
Tindamax works and is less problematic.
I researched Flagyl somewhere once and the website I saw listed 14 reasons a person should not take Flagyl, what they should tell their doctor. (This was information for all people, not just Lymies.)
Here are some of the reasons from the site: any kind of hearing loss or tinnitus, liver problems, hypoglycemia, thyroid problems, and I think these were included: low blood volume, low blood pressure, and possibly, anemia. (Remember these are only half the reasons not to use Flagyl.)
So many Lymies have all of these things that you can see why an LLMD might have to way the benefits.
One more thing, Flagyl is dirt cheap, as in pennies, and Tini expensive at $4-6 a pill.
Posted by laura j (Member # 14257) on :
Well with the risk of low blood volume/low blood pressure, it is totally out of the question for me as I have "POTS" syndrome which IS low blood volume/low blood pressure.
Posted by adamm (Member # 11910) on :
About this grapefruit seed extract:
Someone recently posted a study in which it was demonstrated
that the cyst busting properties of the compound most people
take derive from the use of a toxic preservative. Pure GSE
wasn't shown to do anything.
So basically--all of the cyst-busting drugs are quite
harmful to us (I believe it was intended for this to be the case
by the folks who weaponized the bacterium--but what do I know...)
Posted by docjen (Member # 7510) on :
Flagyl has been the only thing that has arrested my babs symptoms. Like PP von, I stopped taking Flagyl for 2 weeks, and symptoms came roaring back. I started taking it again, and within 2 days, symptoms abated. I have been on it now for about 8 months I think. After almost 3 years of chasing babs, it's hard to let go of something that seems to work.
Posted by lymewreck36 (Member # 4395) on :
Yes, I believe I was at least one of the people that posted the information on grape seed extract. It is true that the actual grape seed does nothing, but it is the harmful chemicals used in the processing that might be busting cysts. I was hoping it was the answer, but from what I read, it is not.
What I have read in the past about the difference in flagyl and tini is that flagyl is a smaller molecule and therefore might penetrate the blood brain barrier better than tini. I think that is what I read.
However, I have to say, that once you have flagyl neuro damage, even tini is going to make it worse. Best not to get the damage.
I know of lots of people that take flagyl in huge doses once a month and have no problem.
I have proven to have sensitivity to a lot of different medications. Flagyl is just one of them
After four years on zithromax, I cannot take another one without my guts totally shutting down. Same for flagyl. Had to have a colonoscopy after the last single pill I took in November. It is that bad.
But listen, don't be afraid because of one person's story. We are all different, and I fully believe that there is no cure without the flagyl or tini route at some point in treatment.
I have been treated for five years now. Cannot kick babs or lyme. Was damaged by fluroquinolones, flagyl, cannot take malerone now or Lariam.
Lots of medications cause problems long term. Switching around is better.
Anyway, that is my two sense. Start new medications at a low dose and work your way up. Herxes climax and then abate. Damage just sticks around.
Mary
Posted by Looking (Member # 13600) on :
Hi Laura:
I've read many of the studies and opinions on GSE and I tend to agree that it is safe and effective and does not contain harmful chemicals as long as you use a reputable brand like Citricidal that is regularly tested. (I have no affiliation with this company.) I also wonder if there is not an ulterior motive ($) in trying to discredit this product.
excerpt from: Grapefruit Seed Extract Debate:
The controversy stems from some reports that GSE contains Triclosan, Benzelthonium Chloride, or Methyl Paraben. Perhaps the reason for the conclusion of those reports is that Citricidal is very similar in molecular weight to both Benzelthonium Chloride and Triclosan, both of which are effective disinfectants, but are toxic to human and animal life.
The similarity in molecular weight between Citricidal and both Benzelkonium Chloride and Benzelthonium Chloride has wrongly influenced some (including drug and chemical manufacturers) to assert that Citricidal has been ``spiked'' with these poisons.
Every batch of Citricidal� is certified for the absence of such residues, as well as the absence of Triclosan, a common germicide and preservative. Independent labs have confirmed these results. (see United States Testing Company Report No. 405993, dated 9/8/95). The results show no trace of triclosan, while displaying very strong antimicrobial activity. Every batch of Citricidal is tested and certified free from chemical and heavy metal contamination. And in an attempt to further improve the product, a source of grapefruit seed and pulp from Certified Organically Grown grapefruits has been secured.
To further show the safety of Citricidal, an Acute Oral Toxicity Study was performed -- Northview Pacific Labs Report No. X5E015G, dated 7/6/95. Results showed that Citricidal is considered non-toxic by oral ingestion with an LD50 of over 5000 mg/kg of live body weight. This is the equivalent of a 200 lb. person drinking close to 1 lb. of pure Citricidal daily for two weeks, before risking a 50% risk of fatal poisoning. (There are close to 20,000 drops in one pound of Citricidal liquid. The recommended adult dose is 5-6 drops at a time.)
Perhaps the only danger this product poses is to the pocket books of the pharmaceutical industry.
Ask your doc about Alinia. It is a cyst buster (though many folks don't realize it) & much easier to tolerate than flagyl, especially if you have neuro lyme and neuropathy issues.
Many docs are just now catching on to the uses of Alinia. I take it & have been making progress.
Posted by bettyg (Member # 6147) on :
Hey, more information on Alinia please. Is anyone else taking this. I have never heard of it, but I did google it.
It is a cyst buster?
Mary
Posted by CherylSue (Member # 13077) on :
bump
Posted by Alv (Member # 15192) on :
Alinia is a cyst buster.When I was on ALINIA my LLMD said no flagyl as ALINIA does the same thing.
Also I muscle test it and my body wanted FLAGYL otherwise I would not have taken it.My body still wants it.PROOVED by both drs that use muscle testing.
I started it in the 6 th month of treatment. ALSi flagyl should be taken for at least 2 weeks non stop so it can reach the maximum level in the blood and reaches places int he body my LLMD said.before I took it only 1 week a month.Now she wasnt 2 weeks in the month and 3 weeks off.
And is working.
Posted by breezywings (Member # 9222) on :
I took the smallest dose they have of Flagyl and had severe seizures for a complete day on them. It was HORRIBLE.
Switched me to Tindamax. Same thing happened.
Never again. Never.
Posted by Parisa (Member # 10526) on :
My husband has been on Flagyl for about six weeks now and is getting great results. He's also been on plaquenil for over a year and I don't think the plaquenil did half of what the Flagyl is doing.
I was concerned about the risk of anemia as he is already anemic but so far it hasn't made anything worse. He also has neuropathy from the Lyme and that hasn't gotten worse either.
So, you can look at all the possible side effects and decide it can't possibly work or just go into it knowing that there's a possibility that the side effects might happen to you.
When you're really bad off, you're willing to take risks - that's why cancer patients do chemo and Lyme patients strong antibiotics.
Posted by ByronSBell 2007 (Member # 11496) on :
I ran a test to show what medications my body can and can not detox. It is a genetic thing....
Anyways, of the antibiotics.... I can't detox rifampin, flagyl, and cipro
Posted by CherylSue (Member # 13077) on :
Byron,
Was that the gnomics profile test from Genova Labs? Dr. C wanted over $500 when I inquired about it. I almost considered having that done. I can't tolerate cipro or levaquin. Flagyl, is too new, I just started, but I feel yucky.
What do you take to get around these genetic defects? BTW, I can't tolerate zith either.
Thanks, CherylSue
Posted by Angelica (Member # 15601) on :
I did Tindamax with no problems that I can recall but I know some people really do herx on it and it can be uncomfortable.
If you get it compounded as Tidazole at a compounding pharmacy it is much much cheaper then buying it as Tindamax.
Flagyl scares the heck out of me and I doubt I will ever take it. GSE I might try again.
Posted by lymeloco (Member # 7192) on :
I was in the hospital with pancreatitis for three weeks and two days and the hospital had me on Flagyl, and I had no lyme symptoms.
My LLMD on the other hand said that he's been hearing this but doesn't understand why because this is an antibiotic that is one that wouldn't help in this case.
Posted by CD57 (Member # 11749) on :
I think maybe I read somewhere that Flagyl can be carcinogenic in large doses, maybe that is what the doc means? but's what's new, isn't everything carcinogenic? I took Flagyl for 3 weeks and did well on it. Would like to try it again but am afraid of neuropathy. Would this go away if it was pulsed perhaps?
Posted by Angelica (Member # 15601) on :
I just read at canlyme that the NP in Dr. S's office in San Francisco said they are starting to think Mepron is a Lyme cyst buster. Who knew?
Posted by Gabrielle (Member # 5329) on :
Here in Germany it says in the package insert of Metronidazole that you shouldn't take it longer than 10 days because there is evidence (from animal tests) that it can cause cancer.
Therefore, our docs usually don't prescribe it longer.
Gabrielle
Posted by herxuk (Member # 15873) on :
This is an interesting thread to me, as I have not yet tried this Abx , and I need to learn as much as possible. Ignorance is not bliss to me, but folly.
I read ( I think on RX Drug site ) They gave these small animal's ( mice ) massive doses of this Abx, I think almost totally fed on it. Probably much more than we would take.
However I seem to remember conclusion was possibly carcinogenic. Perhaps somebody here has read the studies , and can enlighten us more . ?????? Thank you.
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