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» LymeNet Flash » Questions and Discussion » Medical Questions » I thought I was cured!..what happened?

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Author Topic: I thought I was cured!..what happened?
CoronaWithLyme
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I have what's seems to be neuro Lyme/Bart. For years I've been nursing my symptoms naturally and almost fully recovered. The doc prescribed me high dose tindamax & zithromax daily for 30 days. Initially I herxed, but after about a week it cleared and I continued to feel 100% better with energy and brain fog completely clear feeling sharp...

After Expressing this joy with my doc at my followup appt he prescribed me to pulse flagyl, factive, and zith to be my final abx blow....I've been broken with brain fog ever since. I wish I never tried that combo because it jacked my head up and set me way back...

I'm Scrambling to try whatever to get my mind back. It's so frustrating. I thought maybe it was a herx but then felt it could just purely be irritating to my body. 30 days of being my old self was such a tease. I don't know where to go next with treatment... Any thoughts or ideas anyone?

Posts: 37 | From Tampa, Fl | Registered: Feb 2011  |  IP: Logged | Report this post to a Moderator
lou
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It is common to have more herxing when one adds new drugs. What that tells you is that the bacteria are still there, causing mischief. And that you need to continue to treat.
Posts: 8430 | From Not available | Registered: Oct 2000  |  IP: Logged | Report this post to a Moderator
CoronaWithLyme
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That's what I was thinking but the reaction to the meds is so quick it's got me second guessing. Like in 2 hours I will feel like a brain inflammation. I tried 4 times to tough out the meds, but I think they're too harsh.
Posts: 37 | From Tampa, Fl | Registered: Feb 2011  |  IP: Logged | Report this post to a Moderator
lou
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Well, that is the purpose of the pulsing, to make the treatment more tolerable.

Another possibility is for you to lower the doses for a while. Then work your way up to the full dose prescribed. This is called ramping up.

Posts: 8430 | From Not available | Registered: Oct 2000  |  IP: Logged | Report this post to a Moderator
Lymeorsomething
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Yes, lyme is a tease to be sure. I've been there too with nice stretches of the old me only to crash again. It's part of the game. Hang in there.

--------------------
"Whatever can go wrong will go wrong."

Posts: 2062 | From CT | Registered: Jul 2008  |  IP: Logged | Report this post to a Moderator
sixgoofykids
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Talk to your LLMD about it, for sure.

I did have meds that just made me feel worse and gave me no benefit, it does happen.

--------------------
sixgoofykids.blogspot.com

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BoxerMom
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Often treating naturally reduces inflammation and restores function to impaired glands/organs, but doesn't actually treat the infection. Symptoms improve, but the infection remains.

Once antibiotics are introduced, there is die-off and herx symptoms.

30 days of any antibiotic protocol is not enough to eradicate these infections. It is likely that the initial herxes cleaned up the most vulnerable bacteria in your GI and bloodstream, but the dose was actually bacteriostatic. This means that bacteria cannot reproduce, so you don't get the flares, and symptoms improve. But you don't kill off a significant number of bacteria.

In spite of feeling worse (bummer), you may be at bacteriocidal doses that are crossing the blood-brain barrier and killing LOTS of bacteria.

This would be a good thing.

We're all different in how much herxing we are willing to tolerate. I've done the bacteriostatic dosing. It's awesome, in that I feel great, but when I come off the protocol, I relapse. Ultimately, bacteriostatic feels like a waste of time and antibiotics to me.

I tolerate herxing pretty well, but then I'm a long-termer (20 years infected) who hasn't known her "real self" since her early 20s! I wonder what I'm like?

So I can imagine your frustration.

--------------------
 - Must...find...BRAIN!!!

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Lymetoo
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Could be the flagyl.

--------------------
--Lymetutu--
Opinions, not medical advice!

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kday
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careful with the quinolones.
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lymednva
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Agree about it being the Flagyl. It can be a very hard drug to tolerate.

--------------------
Lymednva

Posts: 2407 | From over the river and through the woods | Registered: Apr 2006  |  IP: Logged | Report this post to a Moderator
glm1111
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Look into treating parasites. They can play a big part in Lyme disease. Do a search on here for a lot more info.

Gael

--------------------
PARASITES/WORMS ARE NOW
RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS*

Posts: 6418 | From philadelphia pa | Registered: Jul 2008  |  IP: Logged | Report this post to a Moderator
nefferdun
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It could be factive. Check the side effects on drugs.com and then google it with the side effects you are experiencing. The quinolones can cause serious mental problems in some people.

--------------------
old joke: idiopathic means the patient is pathological and the the doctor is an idiot

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LymeMECFSMCS
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Flagyl gave me terrible peripheral neuropathy that lasted for almost six months after I stopped the drug -- it's definitely neurotoxic. For me it was not a herx -- that drug was just bad news.
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lymeflox
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You might have been floxed. Factive is neurotoxic and causes a myriad of brain side effects in certain cases.
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CoronaWithLyme
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I think you guys are right! Ive just started to read up on quinolones relating to factive and flagyl and the neurotoxic effects seem spot on to what Im experiencing.
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jarjar
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I can't speak for Factive. But I just had soon get run over by a bus then take Flagyl everyday.

I could only tolerate taking low doses about 3 days a week.

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CherylSue
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Quinolines fry my brain. It lasts for almost a year. I shun Cipro and Levaquin. Awful stuff.
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CoronaWithLyme
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I've been sorta taken back by the whole issue of being floxed, and really got bummed out at the possibility of there being no clear cut recovery option.

I will say that over the course of several days Ive been able to significantly reduce the effects of the brain fog, and can think much more clearly. If it helps anyone else, I took a multivitamin and powdered vitamin C. I loaded up on generous amounts of fish oil, flax seed oil, coconut oil, mixed with whey protein which is packed with amino acids. I took milk thistle, and liv.52 for liver support while eating plenty of celery which has a beneficial chemical called lutolein, and drinking plenty of water. Also, probiotics and epsom/h2o2 baths.

I feel much better but I still have a feeling of pressure in my head, and wonder if anyone has any advice on which direction I should look for relief?

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djf2005
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candida

--------------------
"Experience is not what happens to you; it is what you do with what happens to you."

[email protected]

Posts: 2269 | From Lansdowne, Pa | Registered: Mar 2007  |  IP: Logged | Report this post to a Moderator
   

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