Topic: Tindamax/Flagyl---duration to get cyst-busting job done?
Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Starting Tindamax soon.
I have been in Lyme treatment awhile. I will be taking a couple other antibiotics with it--something for the spirochete form and something for the L-form....both of which I'm already on.
So the Tindamax is for the cyst form. Just wondering how long one should expect to be on a cyst buster like Tindamax or Flagyl to adequately bust cysts?
I'm sure it varies person to person, but what do "they say"? What's a good ballpark goal for length of time on Tindamax?
Haven't gotten my script yet, but I'm assuming it's everyday for now. So I'd be interested at what point you can stop taking it everyday, and start pulsing it. (I think it's something like 3-4 weeks after doing it every day?) Obviously I will follow my doctor's instructions, but just to help me see the long term goal, I'm wondering what is considered a good run.
Then once you are pulsing it, wondering how's it pulsed, and for how many months is a good length of time with pulsing?
My body is sick of the meds...thinking of stopping abx relatively soon (within next 6 months or so), but want to bust up some cysts before I stop, and give the cyst buster time to work.
posted
Warning: expect a major herx once the cysts open up.
I've been on Flagyl or Tinidazole for almost 2 years...with some breaks. I herx from either of them big time. It hasn't cured me but it sure helps me feel good, once the original herx calms down.
Posts: 410 | From Victoria BC, Canada | Registered: Jul 2008
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I first started it in Nov. I was directed to take it in a week on/week off fashion. However, I reacted very strongly to it at first and had to use less and for shorter times.
The first round, it sent me nearly back to "square one," but I did bounce back a LOT faster.
I've used it again on and off, and now months later I tolerate it much better and can take a higher dose for a longer time.
So for me I had to start small with it and my pulse schedule was very irregular/interrupted because of my strong Herx reactions from it.
I also hope to be done with the major part of treatment soon-ish, and my LLMD said at my recent appt. that I may only need 6 more months, though I may need some maintenance afterwards.
Good luck!
Posts: 455 | From Was in PA, then MD, now in the Midwest | Registered: Nov 2008
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Hoosiers51
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Member # 15759
posted
Thanks for the replies thus far.
Would you all mind sharing what you are on Tindamax with? Only if you are comfortable!
I'll be on it with Bicillin and Doryx (extended release Doxycycline). I'm thinking this will be a good combo?
Posts: 4590 | From Midwest | Registered: Jun 2008
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Lauralyme
Frequent Contributor (1K+ posts)
Member # 15021
posted
I took Tindimax along with Alinia for a one month period. I don't want to scare you but it was rough for me. I was so unbelievably toxic, it felt like a never ending hangover 24/7
What made a huge difference for me was going for a colonic once a week for four weeks. Definitely reduced the toxic load.
-------------------- Fall down seven times, get up eight ~Japanese proverb Posts: 1146 | From west coast | Registered: Mar 2008
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Hoosiers51
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Member # 15759
posted
Thanks. Sorry to hear your experience was so bad. I am preparing myself that it could get bad from herxing, or from just the med being toxic to me.
If it's the first, I'm thinking I'll stick it out as long as needed/possible (until herxing is over, and longer for good measure), and if it's the second (med itself feels toxic), I will probably try to stick it out two months IF I can make it that long.
I did Flagyl a lonnnnng time ago for Lyme cysts, and only lasted a couple days on it. I think it was toxicity. So I definitely understand having a need to stop something because of a BAD case of the "icks." But I've heard those problems can be better on Tindamax, so here's hoping.
Posts: 4590 | From Midwest | Registered: Jun 2008
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Hoosiers51
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Member # 15759
posted
Bump...looking for more input.
Posts: 4590 | From Midwest | Registered: Jun 2008
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lymebytes
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Member # 11830
posted
The way I understand it is that the cysts will "open" when abx are stopped - when the coast is clear (no abx detected by the bacteria) they should come out of hiding. I have never understood the idea of using a cyst buster if stopping all abx achieves the same thing.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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posted
I was only able to handle 250mg of Zithromax per day, along with pulsing 250mg of Tindamax 3x per week. The doctor purposely put me on a "baby" dose, as she called it.
I only lasted approx. 4 months before I HAD to stop. I got so incredibly sick and lost a lot of weight due to spending a lot of time on the toilet.
Also, I had no appetite because my stomach constantly felt like someone had been punching me all the time. It was miserable.
That was almost 2 years ago and I still have not been able to gain the weight back. I'm 5'2" and have struggled to get back to a range of 95 - 98lbs.
So, that was my experience. The doctor knew that Flagyl would kill me and that's why we tried the Tindamax.
Good luck! Everyone reacts differently. I will say that it DID help me, but the tx was becoming detrimental in other ways. That's why we stopped it.
Take care, terri3boys
Posts: 268 | From Texas | Registered: Aug 2007
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posted
Tracy9: where did minocycline and tindamax fall on the best treatment list? Or zith and tindamax?
just curious--thanks!
Posts: 648 | From northeast | Registered: Feb 2009
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
Tracy - the 1 and 2 best treatments you have listed were for what? Lyme? bart? myco?
Posts: 3528 | From US | Registered: Apr 2007
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