posted
Have been wondering if Grapefruit Seed Extract is enough to break up cystic form of Lyme, I had carried Lyme disease around for years with few symptoms.
It all came crashing down on me during the stress of my son being diagnosed with Lyme.
So I assume my immune system working on the Lyme all that time had kept it in check by keeping it in the cystic form ?
Just looking for opinions on what works best for the cysts ?
Posts: 448 | From minnesota | Registered: Feb 2010
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posted
I took GSE and it didn't do much for me. Now im on Flagyl and i've noticed a huge improvement.
-------------------- [IM] Posts: 64 | From Calgary | Registered: Jun 2010
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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
Nope, GSE won't and can't work on Lyme cysts.
Flagyl is one option, but read up on all the cautions here if you take it, and go slow...
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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Where do I look to find the cautions on taking Flagyl/Tindamax? I've tried both, just recently Tindamax. Even pulsing on a small dose (125mg 4 days a week every other week) I have an awful time with it. To the point I've taken a month off.
-------------------- Susan Posts: 80 | From Queen Creek, AZ | Registered: Nov 2007
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posted
desertlily, I am also having a terrible time on Tindamax....only taking 1/4 of the dose. I get extremely ill. I have found that taking Benedryl eases the terrible symptoms that go along with a Tindamax herx.
That's the only way I can continue to take it 1 week a month.
Posts: 677 | From Virginia | Registered: Sep 2002
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massman
Unregistered
posted
Ahh.....drugs drugs drugs......the answer to all problems ?
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posted
imagine2, I have a friend that swears by Benadryl for herxes, I haven't tried it yet, I don't know why...I think I will when I start back up on the Tindamax. Thanks!
If you don't mind me asking, what kind of symptoms do you get when you herx on Tindamax? I'm wondering if certain types of symptoms show up or if it's just different for everyone.
-------------------- Susan Posts: 80 | From Queen Creek, AZ | Registered: Nov 2007
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BackinStOlaf
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Member # 23725
posted
The flagyl I've been on has made my tingling a million times worse. I don't know if I should continue to pulse it and just deal with the possibility of permanent tingling all over. Maybe it's a fair trade. Otherwise, how will I deal with the cystic form?
-------------------- First Symptom 9/09 Multiple docs, negative Labcorp test LLMD: 1/10 Positive Igenex/CDC test Treatment 2/10 2/10-8/10 Amox, ceftin, zith, flagyl Currently: Bicillin, Minocycline, still dealing with severe breathing issues
Posts: 1121 | From New York, New York | Registered: Dec 2009
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posted
Wow, I am surprised at how many people mention not being able to take the Tindamax because of the herxs. I wonder why I am not getting any herx reactaions?? I did from Doxy and Amoxy!!
Maybe after a year of antiboitics, I have gotten my Kete load down??? Maybe/hopefully??
Someone just asked me about it and I said the only affects I knew of were runny stools and vivid dreams. I hope they don't have the problems you guys did........
Posts: 893 | From Florida | Registered: Dec 2008
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
quote:Originally posted by BackinStOlaf: The flagyl I've been on has made my tingling a million times worse. I don't know if I should continue to pulse it and just deal with the possibility of permanent tingling all over. Maybe it's a fair trade. Otherwise, how will I deal with the cystic form?
Check with a pharmacist. If the tingling is neuropathy, some medications can make the nerve damage permanent.
Carol
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
desert lilly-
search here under "flagyl."
the longer you have had Lyme, the more likely it is that you have built up many cysts; breaking tons of them open at once with flagyl is intolerable... literally.
pulsing flagyl is a must in that case, but pulsing can mean taking flagyl for just 2 days and off for 5.
if you go on flagyl you will see for yourself what you can tolerate. thos eof us who have been there can just tell you that very slow and steady beats too much to tolerate at all everytime.
good luck.
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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Thank you so much, both for your info and words of encouragement. I've had Lyme for 10 yrs now, started treatment 3 yrs ago, when I was finally diagnosed, by a wonderful LLMD who understood the concept of "go slow and steady" very well, I couldn't have tolerated anything else.
Every so often I forget and try to push through herxes too hard and end up in worse shape then before. Sometimes it's hard to be patient with the process, but you can't make your body do more than it can do.
-------------------- Susan Posts: 80 | From Queen Creek, AZ | Registered: Nov 2007
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posted
Hi Desertlily, I have terrible sternum pain, muscle pain, ligament pain, extreme dry, gritty eyes, seering pain in upper back, and fatigue so profound I can barely move.
I've heard lyme patients say "I feel like i'm dying but I can never quite understand that feeling until I tried Tindamax...now I do.
What kind of symptoms do you get?
Posts: 677 | From Virginia | Registered: Sep 2002
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posted
My LLMD wants me to add tindamax to my regime, though Im getting nervous after reading all these posts. He says it's the best cyst buster-better than Flagyl. Think Ill wait till after the holiday weekend to start it.
Posts: 160 | From NJ | Registered: Dec 2009
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posted
My doc had me on Tindamax, though he did mention that I was the only patient of his that he had used it on; he prefers minocycline. I was having what looked to be a reaction to Doxycycline, and then something similar with mino.
I've been in treatment for recently diagnosed Bartonella, and he retested me for Lymes. He thinks the Bart can cause the body to generate antibodies for a variety of things, confusing the Lyme test.
To my dismay, I had about the same number of bands on the recent Lyme test, though they did switch around some, and he is not putting much emphasis on band 41 anymore (he says numerous bacteria re-use the protein that causes a band-41 reaction on the test)...
So after Bart treatment is done, we are going to have to retest for Lyme and possibly treat for it again.
It never freaking seems to end.
Posts: 131 | From PA | Registered: Aug 2007
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My main symptoms are horrible migraines, much worse brain fog, fatigue and overall pain. My normal numbness in my L leg and arm gets much worse, and I also get these "brain zaps".
I've taken about 3 weeks off now, and in the meantime have been increasing my Rocephin (almost up to the goal of 2 gm/day). I've been noticing that my energy has been doing much better and my brain is clearer than it was before I started the Tindamax. So I think it is helping, but I think I just need to go at a much slower pace. This week I'm going to try just 1-2 days, (depending on how I react to the first day) and just go from there.
-------------------- Susan Posts: 80 | From Queen Creek, AZ | Registered: Nov 2007
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posted
Mepron for cyst busting. Must be taken with zith.
Also good--taking 2 week breaks between abx hits. Makes the bugs come out because they think the coast is clear. Then you hit 'em!!!
Posts: 702 | From North Eastern USA | Registered: Dec 2009
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Mepron for cyst busting?? It's a Babesia tx! Hmmm, are you sure?
Posts: 3778 | From around | Registered: Mar 2008
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posted
Yes Mepron for cyst busting--it hits Babs too of course. This according to my well known ILADS llmd who does research and testifies in Washington on our behalf. It must be taken with Zith, as I said before.
Posts: 702 | From North Eastern USA | Registered: Dec 2009
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