tindamax

[norcalmom]

DS has been on a fairly high does of tindamax for two weeks now. Is this what could be causing extreme moodiness? He's always moody, irritable, and with the holiday he's been on "vacation" (not me!) for two weeks - so normal routine is out the door and all he wants to do is x-box and get on his computer. usge fights have eruprted over it, and other silly things that he seems incapible of taking no for an answer. Pandas make that a little tough for him usually, but right now it is off the charts.

 

anyone with any personal experience with this antibiotic?

 

I don't think its herxing - I did an experiment yesterday - I didn't give him his first two doses, becuase we were on a family outing, and he did well all day until I gave him a does late afternoon. Within 30 minutes he was a different kid. Maybe it is just coincidence, but I appears like a side effect of the drug, but isn't listed as one that I see.

[SSS]

Based on our experience with dd on Tindamax, I'd say you are doing great with it!

It was a doozy here, in fact, the most significant herx ever- we ended up going off of it after

4 weekend attempts- not there yet.

Hang in there- I was disappointed, because I hear of wonderful gains/breakthroughs from it.

[NancyD]

Sounds like herxing to me. Tindamax made a HUGE difference for us. Lots of herxing initially for several weeks and then big improvement, but it did hit us like a ton of bricks. DD was extremely moody and angry and she raged quite a bit. Even threatened to kill me. Her anxiety also got worse. BUT, we started off with Tindamax daily for 3 weeks and it was just too much for her so we decided to pulse it 3 days a week with Azith. That was much better and SOMEHOW we managed to work through it. Then about a month and a half later she was calm, sweet, caring, no moodiness, and much less anxious.

 

For me, Tindamax made me moody but it hit me more with fatigue and joint pain. After a fee weeks of taking it 3 times a week i started feeling better. Long Epsom salts baths and saunas really helped as well as bentonite clay and charcoal.

 

I just went off Tindamax after being on it for almost a year and I'm feeling really great. DD may go off it soon after being on it for 15 months.

[LNN]

Our experience was similar to Suzan's. DS was totally pushed off a cliff by it. Both physical herxing (fatigue, etc) and neuropsych - one of the worst "pandas-like" episodes we ever had - ticcing, rages, and getting fixated on irrational ideas (I must go to the store NOW to buy a Nintendo DS NOW that I haven't yet saved enough money for NOW and I don't care that any of this isn't making sense, we need to get in the car NOW! - for 45 minutes...)

 

We had to stop after 5-6 weekends. After that, things calmed down and DS did enjoy a great period. So tindamax packs a wallop but also can yield a big payoff. No medals given for slugging through too much at once. Consider pulsing - many LLMDs only have you take it on weekends. Or you can give a few doses and then take two weeks off. Talk to your doctor about a different schedule. Also make sure you have a good detox program.

 

My son's inability to detox ultimately led us to discover KPU. Since he's been treated for that, he's doing way better and I'm thinking we may try tindamax again in the spring.

 

Hang in there, but also pace yourself. My advice is to work with your doc to find a plan that's livable.

[norcalmom]

thank you all for getting back to me so quickly - I wrote the post last night after another blow-out, and got to get on this morning and see that this could indeed be the tindamax (most likely suspect). It isn't his usual pandas stuff - just the moodiness and mental inflexibility.

 

My goal is to make it though a 4 week cycle...although I don't know what will happen when school starts, it could be too much for him. I don't want to have to do tindamax again, and he is half way through right now.

 

On another note when I was reading about tindamax - I saw that Burrasco recommends not using it at the same time as Doxycyline (and the other drugs in that class) .So I will be contacting our LLMD regrading that (he's on tindamax and doxy right now). Burrasco wrote that the tindamax lowers the effectiveness of the doxy, and high blood concentrations are what is needed on the Doxy, so ...

and also about pulsing - DS is not pulsing - he is on a full dose of tindamas (250 - 3 times per day for total of 750/day) and full does doxy - 150 twice daily -he had to ramp up to this - he started with one doxy/day for a few days, then 2, then we added in the tindamax a week later.

 

Between all the antibiotics and supplements and probiotics, when do you give bentonite clay? won't it bind to either the antibiotic or the sups/probiotics ? When school starts next week his medications schedule will look like - 7:30am - antibiotics and A-myco herbal tincture, yogurt/probiotic in lunch, 3:00 antibiotic, supplements before dinner and second A-myco, antibiotics at around 8:00 probiotics before bed, around 10:00pm. When would I give bentonite clay that wouldn't bind to something else?

 

I'm going to try the epsom salt bath tonight - that doesn't sound like it will bind anything, and he might just like it.

 

THANK you all sooo much again. I'm going to forward to my husband - who will hopefully lighten up on DS on the small stuff when he see your experience with tindamax. The constant badgering for stuff that he wants (to do) and is not allowed -along with the tantrums that follow - is driving us MAAADDDD!

[philamom]

Here is our experience with Tindamax. Daughter started it in Sept 2010 on weekends only. Herxed on Sun-Tuesday but also improved greatly with treatment. It took a few weekends before improvement started. But then when we did IVIG's with the Tindamax, she had huge "pandas-like" episodes, like LLM described, lasting 2+ months. At the time, we were doing IVIG every 3-4 months because of the extreme herx. After one of her IVIG's, she asked me to kill her (even brought out a large knife)- very scary. In July 2011, her LLMD said to discontinue the Tindamax and continue with the IVIG's, which we then were doing every 8 weeks. We no longer have an extreme herx with IVIG (just normal temporary increase). With that said, I feel the Tindamax made the most improvement with dd's lyme treatment. My daughter had severe GERD and GI issues that dissapeared almost immediately on the Tindamax and have since returned since being off of it (started a month after stopping Tindamax). Of course, now we are dealing with other factors that could be in play - it's hard figuring out what is causing what.

 

Also- she took Tindamax with Minocin.

Edited January 4, 2012 by philamom

[mdmom]

We call Tindamax the "Angry Pill," as it causes my daughter to be very mean and irrational, which is unusual for her. I was glad to read the posts and know that others have had similar experiences.