posted
I just re-interduced flagyl at a very low dose (250mg 1x a day) last week and can't tolerate it.
I have been off of it since April in which I was on it for 9 months taking it every 3 weeks at for a week at 1000mg a day.
It became very toxic to my body. With trying it at a low dosage just last week within day 2 the symptons started up again.
They are severe headaches deep inside my brain, depression, crying, rage all in one, acidic problems, and now my back is in a lot of pain.
Any thoughts expressed on a good cyst busting abx would be so helpful. Also any input on IV's would really help too because i'm thinking of taking that route also.
I have been in treatment for 15 months but have had lyme for 30 yrs and have hit a wall and I am ready to give up. I'm tired and so is my body.
This really is a horrible disease and everyone going through the ups and downs of lyme deserve more respect from the medical field
Posts: 101 | From NJ | Registered: Apr 2008
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
i don't know about biaxin being a cyst buster but have you tried that?
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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posted
Hi Randibear, Thank you for responding. I am on biaxin along with amantadine and tried flagyl again. It just kills me almost immediately.
I would like to advance and kick some lyme butt. I'm tired of not living and I think my family deserves a mother and wife back.
Posts: 101 | From NJ | Registered: Apr 2008
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
well i took flagyl. after about the 3rd or 4th day, it put me flat out. i had such a migraine i just laid ont he sofa and cried. it lasted for several days and then cleared up.
my llmd said it was attacking the brain. oh boy did it!!
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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posted
It was attacking my neuro lyme too inwhich I have a whole lot of. But, it affects the rest of my body just a little to much also.
It becomes a bit to toxic for me to handle. I need to kill my neuro because my main symptoms are in my brain. My neuro has gotten worse with treatment so it must be hitting it.
I'm speaking with my Dr on Tuesday to figure out the next step. It's just so dishearteing at times to figure out what is the right step to take.
Posts: 101 | From NJ | Registered: Apr 2008
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Angelica
Unregistered
posted
Tindamax is a cyst buster that is much better tolerated by many people. If you are paying for it out of pocket you can get it compounded as Tindazole and save a lot of money.
If you need to know where to get it compounded for much less send me a PM.
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posted
Flagyl induced extremely painful peripheral neuropathy in me that was HORRIBLE and lasted for months after I quit. It is much better now, but only in recent weeks. So if it seems toxic, it really may BE toxic.
Posts: 929 | From Massachusetts | Registered: Oct 2007
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posted
I haven't tried anything other than flagyl for busting cysts. My dr feels that flagyl is the best known drug for that.
How have Tindamax and Plaquenil compared to flagyl in cyst busting? Are they able to break the brain blood barier too?
Posts: 101 | From NJ | Registered: Apr 2008
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posted
My LLMD says alinia is a "cyst buster". Apparently a number of other LLMDs are coming to that same conclusion as it is being increasingly given to LD patients. In my experience, much easier on the body than flagyl.
Alinia does turn all bodily fluids a radioactive yellow & gives me a bit of a herx. But no where near as toxic an impact as flagyl (which i took for 4 months). The downside is it is very expensive ($20 per tablet). Good Luck
Posts: 213 | From ohio | Registered: Jul 2006
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lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
I couldn't tolerate flagyl. My doc put me on tindimax and I haven't had a problem with that at all. Hope all works out.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Tindizole, and Grapefruit Seed Extract from Nutribiotics. Both strong anti-cystic treatments.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
At this time, I'm on IV Flagyl with my IV Rocephin so I'm not sure that the herxes or side effects are the same when done IV vs. oral.
I do know that I'm getting my butt kicked good and hard but then I'm on other orals while taking these IV's.
I do know that I had been on Plaqunil before the Flagyl which is also suppose to be a cyst buster. I was put on Plaqunil WITH biaxin at that time.
It may be an easier path than the Flagyl, but I believe Flagyl is considered stronger. But perhaps you could start with something easier and THEN try the flagyl if your doctor is set on that?
I really don't know but hope you are able to find something that your body can tolerate AND make you better. Tough combo. Hang in there.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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posted
Thank you Cathy, How are the IV's to tolerate? My Dr and I have been discussing about having the IV as my next step.
How long have you had the IV in for? I am trying to figure out what I feel would be the best next step for me.
I need to go stronger and push my body a bit more even though I don't want to but I feel it is time.
Posts: 101 | From NJ | Registered: Apr 2008
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
Proteolytic Enzymes are supposed to be good cyst busters. You take them on an empty stomach.
Also bee venom ointment is supposed to work well.
I have not found any documented research on either of these as cyst busters, but they seemed to work very well for me.
I did also pulse Flagyl for about six weeks, and boy, was that nasty, but it worked well.
What is the reason you can't tolerate it? Yeast, fatigue, or something else?
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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posted
The headaches are so intense that I just can't tolerate. I can take pain but these are just horrible.
I also get extremely emotional,lots of tears and depression which I can deal with but than I get really nasty too. Everyone scatters lol
But the worst part is, I get horrible acidic sores in areas that no woman should get. This time I also got the same acidic sore around my nose.
It is just too toxic for my body. I was off of flagyl since April and tried to reinterduce it in slowly but right away the symptoms came right back. Even at such a low dose.
Posts: 101 | From NJ | Registered: Apr 2008
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posted
Try tinidazole as someone suggested. Many cannot tolerate more than a SLIVER of flagyl in the beginning. You are starting out too high, in my experience.
If you try tini...begin VERY slowly!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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posted
Ok ty, I will speak to my llmd about tini. He did mention that because of my very low body fat the abx's get into my system faster then if I had a higher % of body fat.
So, I think starting out with a smaller dosage is key to my tolerence.
Posts: 101 | From NJ | Registered: Apr 2008
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
After Flagyl I got some nasty yellow runny sores in my nose that were not candida, but turned out to be a different fungal infection.
They responded to nothing until I tried neem topically and orally. This may or may not be what you are experiencing, but I thought I'd share.
Toxins from systemic fungal infections can weaken mucus membranes, making people more susceptible to various skin type infections.
All the more reason to defend against candida and fungals when using heavy hitters like Flagyl.
Sorry about the headaches.
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
Kirsten, I agree with Lymetoo. You started out at a high dose of Flagyl. My LLMD recommends starting out with 1/4 pill. I take 1/8 on Friday night which tires me out for a weekend, but I won't take it on an evening when I go to work the next day.
I've heard reports that the brand name has fewer effects than the generic Flagyl. Some docs won't prescribe the generic.
My LLMD reports that some can't do the full dose of Flagyl, and that's okay. He feels its the cornerstone of his protocol. I had more side effects from the tini... I tried the Alinia, but that made my sick, too. I couldn't go beyond 3 days. I'm very sensitive to meds.
BTW, currently I'm functioning between 80-85% and have returned to work 7 weeks ago fulltime. I have neurolyme, too. Doxycycline worked great for my head. Ceftin, too. Flagyl is also good for babesia my LLMD claims.
Good luck, CherylSue
Posts: 1954 | From Illinois | Registered: Aug 2007
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