Topic: Am I the Only One that got Killed on Tindamax ?
lymetwister
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Member # 19590
posted
I've done a bunch of searches on here and don't see anyone who reacted as I have.
I was doing "better" for me prior to starting this drug. I was actually on a 5 day hold from the newly started Minocycline, as I took my kids to the Ocean, 3 hour drive from my home. We were gone for 5 days and I did quite well. I walked the board walk, spent 6 hours in a water park with them. I had plenty of symptoms down there, but was able to keep things under control with Xanax, Percocet, etc.
Came home and started the Tindamax at 500mg 2 x day. Had to stop on the 3rd day and I can't get out of this Brain Herx now on day 5 off everything. What the heck did this med do to me. Yeah, I was taking it with low dose Minocycline, but I had been on that drug before the Ocean trip, so it wasn't that.
It feels like Encephalitis all over again. My Autonomic Dysfunction is acting up again with the Tachycardia, Shortness of bReath, Anxiety from hell, etc.
There is something with me and my infection that doesn't allow me to take full doses of meds. No way to say if it's a Cytokine storm, die off, toxins, inflammation, etc. I'm sure it's 1 or 2 of the above.
On one hand, I say this must be the drug for me b/c it messes me up so bad, but on the other hand I say, if I don't get the correct dose, it's gonna kill me.
I don't think I ever felt so confused in the head as I have been feeling from this Herx. I know who I am, where I am, etc. but at the same time, I feel seriously confused and scared.
My Nursing background I thought would save me from this disease, but with so many unknown variables, RN and even MD seem to mean nothing.
Hard to believe that a week ago I was flirting with woman on the Boardwalk and right now I feel like I belong in the hospital.
I'm positive it's from the Tindamax, yet when I search the topic on here I don't see anyone who gets thrown off the horse like I do from just 3 days of it. Again, 5 days holding counting today, and I'm still in a very bad place.
I cried the last few days I think more then I've ever cried. This is so wonderful having to have my kids see me like this. 9 and 11 y.o. watching their dad suffer and not having a mother in their life.
If it weren't bad enough, I'm having dream where I'm crying pathetically in my dreams too. I must be having Anxiety in my sleep as in these dreams I'm having, I'm complaining to Dr.'s in hospitals about what I typed above, but again, in my dreams while asleep. Can't get away from it all.
So, what do you guys think ? Did I bust open a bunch of Cysts ? Do I need to put them back in Cyst form with the Mincocycline ?
My LLMD will only say I'm having a brain herx. That doesn't do me much good.
Very lost and more time wasted again.. So discouraging......
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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The first time hubby ever did a cyst buster his doc had him take tindamax but he pulsed it 2 days per week. At the same appointment the doc stopped his minocycline which he had been on low dose for over a year at that point. But the doc did not add back any other lyme meds. Think hubby was on factive at that time also.
After the 2nd weekend dose hubby ended up in the hospital with severe neuro symptoms -- tremors and dystonia and vomiting etc.
We talked the doc into putting hubby on IV rocephin which he remained on for 6 months in 2010. After about a week hubby added back the tindamax -- he took 1/4 a pill to start with and worked up to the normal dose of 2 pills a day over several weeks.
Later when hubby used flagyl his fevers started with the first dose of IV flagyl. Later he has been able to tolerate oral flagyl -- takes it every day.
I personally I am not sure you can get out of your symptom spiral without IV meds. Hubby has just restarted IV rocephin and IV zithromax. We have had to adjust his meds as he is having low grade meningitis symptoms and autonomic dysfunction -- elevated blood pressure (new symptom for him).
The LLMD was really trying to help and prescribed the IV rocephin at 2 grams 2 times per day -- but after 12 days on that dose it became obvious that hubby was herxing even worse and so we switched to 1 dose of rocephin and 1 dose of zithromax. Also decreased the rifampin from 300 mg daily to 150 mg daily. Hubby is still having daily fevers so we can't back off too many meds.
Hubby has learned the hard way that even after just a few days break from meds you cannot just restart them at the previous dose -- usually need to restart at reduced doses but can usually increase quicker than when first starting new meds.
Abruptly stopping and restarting meds can be very disturbing to the nervous system.
Sorry you are feeling so bad.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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lymetwister
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Member # 19590
posted
Thanks for your thoughts as always Bea. I think it's pretty safe to say that Oral drugs for me do get into the brain.
Just to recap, I had been on the Oral Doxy but had to stop b/c of the terrible burns on my hands. I really hadn't been out in the sun directly. I was tolerating the Doxy other then that and actually doing a bit better.
The switch to the Tindamax is what did this, I'm sure of it !
I just started too high.. It's the Anxiety that I can't get under control.. I think the Anxiety causes the crying.. Who knows.. I'm one big mess right now
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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sixgoofykids
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I did terrible on Tindamax. It was horrible.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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nonna05
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posted
six ,you did bad on GSE also,,,What did you finally take???/ What happened when you took Tid???????
Anybody else??
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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lymetwister
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Member # 19590
posted
Six,
Horrible on Tindamax as in what were your symptoms ?
I find it hard to believe that just 3 1/2 days or 7 doses at 500mg and now holding on the 5th day, I'm still flaring. I know my Herx's don't begin to clear up until 6-10 days. That has been my experience with most treatments that do this to me and when I hold.
Perhaps I should just do Nothing for a few months and see where that lands me.
What I go through is Insane !
My Vitiligo is the worst it's ever been this year. It's all about quality of life. Funny thing for me is that even though my emotions are all over the place and my Autonomic dysfunction goes nutso all day long, my mind is still 100% intact.
How is that ?
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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sixgoofykids
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It felt like a cytokine storm on tindamax. GSE was bad, too. I took GSE, but only a few drops, like five drops max.
I never took a cyst buster other than that, nonna. I got rid of infections with photons.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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lymetwister
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Six, did your Cytokine Storm feel like what I describe ?
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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sixgoofykids
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It felt like a really bad, achey flu .... but like ten times worse than any flu I've had. Cytokine responses were common for me, I had them to several meds.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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lymetwister
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Six, so not the Autonomic Dysfunction then, right ?
This is my biggest problem which I guess is from Cytokine Storm..
I guess just see my newest post about stopping
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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sixgoofykids
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I don't know what that is ....
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
It's not just you. Tindimax wrecked when I had it for an unrelated infection while having Lyme 5 years ago. To this day, if I have to take Tindimax for anything else, it is the only oral AB that actually causes something close to a herx in me. I have horrible stomach swelling and it becomes rock-hard. My Lyme doc at the time told me it was because it was a cyst-buster, and the cysts were lurking in my digestive tract.
The last time I tried to have it, I vomited it up 20 minutes after. I don't know what it is about this AB in particular. It must be doing something good, though.
Posts: 36 | From Connecticut | Registered: Jun 2012
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Lymedin2010
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Tindimax was like taken nothing for me, so was Flagyl.
Posts: 2094 | From NY | Registered: Oct 2011
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nonna05
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well now what Granny..no tid/gse/flagyl..Yet others swear by it.
I want well > Photons are the 880???? Spirocheta,How are you doing now?? what are you taking now???/
Lymetwister are you taking binders and detox stuff..?/
posted
yea for about a month I herxed like mad, then I started having steady improvement. I think Tindamax really stirs stuff up and kills a great deal.
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The combo tinda + mino killed me too. Never recovered from it and dont know why.
Posts: 214 | From Home | Registered: Apr 2011
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ukcarry
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I had the most excruciating large, 'Welty' hives on a combo of Tini, RiFampin and Zithromax (don't think the latter was responsible).
It is hard to be sure whether extreme reactions are caused by allergies to medication or mass microbe killing, but this was too extreme to experiment with and later The Breakspear found a massive reaction to Tini ( with a pretty bad one to Rifampin too).
More recently, I discovered from the Detoxigenomic profile that both these are on the list of drugs that I may not metabolise normally because of genetic polymorphisms in the liver's P450 cytochromes. This is expensive, but a useful test to have done if you can afford it.
Posts: 1647 | From UK | Registered: Nov 2008
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Summer3
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I didn't have much of a reaction to tindamax, but I was only allowed to take it for one week. I have had no reaction to GSE and have not tried Flagyl.
I herx badly without flagyl or tindamax. Maybe my LLMD is saving that for when the infections are a little more under control.
sixgoofykids
Honored Contributor (10K+ posts)
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posted
quote:Originally posted by nonna05: Photons are the 880????
Yes, the Bionic 880 and the PE1 are photon treatments.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Lymedin2010
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Summer you and I appear to be opposite, what did you test positive for?
I tested negative for Bart, Babs, and had band 41 & 39 for Lyme on Igenix.
I had high EBV and M. Pneumonia titers and that's all she wrote.
Posts: 2094 | From NY | Registered: Oct 2011
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AuntyLynn
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Are you taking curcumin? It might be helpful if your herx is inflammatory!
Also, New Chapter makes an herbal supplement called "Inflammend" that some folks say really cuts down symptoms of inflammation. (Including joint pain!)
I'd be taking Vit. C and lots of fluids.... whatever you can to help clear the products of die-off.
I'm sure that others here might be able to offer some effective detox remedies.
Posts: 1432 | From New Jersey | Registered: Jan 2012
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