Caution re: Tindamax use if PANS or PANDAS

[T_Mom]

I want to post this in case others are in the same position--I feel like yelling: Warning, warning!!! Tindamax had a HORRIBLE effect on our PANS/PANDAS d (13).

 

She has been out of school for over a month now with classic PANS OCD/ticcing.

Regretfully, after testing for lyme the blood results indicated some ind. bands.

 

Tindamax was tried.

 

We lasted two Saturdays, and then the prescribing llmd doctor said to stop and to increase Augmentin instead. (We had a weekend phone appt. in desperation.)

 

Tindamax is supposed to help with lyme, as it crosses the barriers and is a known "cyst buster" --

 

Well, if your child is in a PANS or PANDAS exacerbation I cannot help but wonder (AFTER our experience these past two weeks) if the use of Tindamax could accelerate the autoimmune reaction -- make it worse -- as it is said to permeate "walls"-- if your child is in a PANS AUTOIMMUNE exacerbation could this open the flood gates?

 

I feel we all need to be very cautious about treating "lyme" if your child has PANS.

 

Yes, PANS may be triggered by a reaction to lyme initially, (that makes sense.) However...since PANS is an autoimmune reaction, if it is treated as lyme I can't help but wonder if great caution needs to be used as to how and with what it is addressed.

 

Our daughter's OCD went off the charts, she developed a screaming vocal tic, screaming at us, counting rituals, destroying the house again, OCD intrusive thoughts take-over, it has been HORRIBLE!!!

 

OK, so at first I thought "possible herx"...but really??? Finally we called the lyme doc this weekend and he said TAKE HER OFF--she is having a BAD reaction. TRY AUGMENTIN, double it to the SS dose of XR 2000mg a day and see what happens in a few days.

 

This has all been a terrible episode -- but then to have this TINDAMAX issue...

[Hopeny]

So sorry to hear this. I know how frustrating this is. I wonder myself if Tindamax reactivates Lyme spirochetes or if this is a rxn to the medicine. My (very conservative) LLMD has a view that the cyst form has never been demonstrated in vivo, only in the lab, and does not address it. I personally believe it exists though. We are using NAC and Rifampin and I am hoping that busts up any possible cysts in a mellow way. Recently I tried one drop of an anti microbial herbal med and it brought back DD's major obsessiveness/suicidal ideations. I am still trying to manage that and get her back to where we were at about 95%. Ugh. I am so furious with myself.

Have you tried charcoal to try to get whatever it is out of her body? I am trying to do extra detox with Burbur and dead sea salt baths.

Edited April 18, 2013 by Hopeny

[LNN]

TMom - I'm so sorry. DS cannot handle tindamax well either. It seems to cause many inflammation related symptoms and increases his anger. Is it an autoimmune thing or a herx? IDK. I just know it's too hard for him to handle. That said, treating lyme in other ways was what brought him back in a way that straight Pandas treatments never did.

 

I hope your personal h**l subsides. You must be at wits end. You're in my thoughts....

[SSS]

I find your theory interesting (and am really, really sorry for the additional pain and stress- we all know and feel how horrible that is)

 

Interesting in the blood barrier PANS autoimmune and Tindamax- I had a positive PCR blood test for Lyme disease- 100% positive spirochetes in my blood-

and found Tindamax my top favorite drug to treat my Lyme- I did it 2 full weeks on/ 2 weeks off for 6 months plus, and yes, building up to the first 2 weeks on gave me an excruciating migraine that lasted for days, and it was he!! to get through, but after that, I felt Tindamax (along with Bicillin shots)

cleared out my Lyme like no other- gave me neurological gains in my memory.

 

However, I do not have PANS, nor an autoimmune condition.

When I tried Tindamax for my dd, we had massive, unacceptable rages- that my best efforts at detox could not thwart.

Flagyl, another cyst buster, did not have this type of reaction in my dd.

She had some rounds of Flagyl that were tolerable.

 

I believe it is Dr. Eva Sapi's research on Tindamax being a top cyst buster for spirochetes- and warning TMI ahead-

when I was using it, I saw irrefutable evidence of biofilm mucus crud leaving my body-

[sf_mom]

I am so sorry to hear your DD response to Tindamax. It is also possible that the tindamax got at biofilms releasing additional infections that she wasn't ahead of with current antibiotic protocol. We had similar increases in symptoms with Rifampin (older DS) and with Core (younger DS)..... the protocol was 'not tolerable at the time' probably due to herx/inflammation. Once we got overall load down and addressed inflammation ongoing with herbal anti-inflammatory both were able to resume protocols (approximately a year later). There are many ways to address both biofilm's/cyst form of Lyme in the future.

 

Eva Sapi's comments on Tindamax:

 

 

When quantitative effects on biofilm-like colonies were evaluated, the five antibiotics reduced formation of these colonies by only 30%–55%.

 

In terms of qualitative effects, only tinidazole reduced viable organisms by ~90%.

 

Following treatment with the other antibiotics, viable organisms were detected in 70%–85% of the biofilm-like colonies.

 

http://www.mdjunction.com/forums/lyme-disease-support-forums/studies-research/2710311-eva-sapi-articlebiofilmsantbiotics-may-program

[lismom]

We are about to start with one 250mg of tindamax one time per week and gage how that goes. This is at the 2yr mark for treating lyme/bart. We did use grapefruit seed extract every 6 months and did herx, but I don't think its able to get to the real hiding places. I think tindamax is one of the strongest antibiotics to break biofilm and cysts. And for those who have this in the brain, which I know my son does, I know we don't have a choice but go after this. If not addressed the cycle of biofilm and cyst will just keep the disease alive and well. We are also starting round two of rifampin after two years. What a battle this has been for my son. Kathy

p.s. bart makes biofilm aslo

Edited April 18, 2013 by lismom

[T_Mom]

Thank you for the comments and support, much appreciated.

 

I guess my problem is that here we are, my d is out of school (going on 6 weeks now), has had classic PANDAS/PANS OCD and ticcing, with raging, loss of attention, etc. and we are STILL here. It is terribly painful for her and for the entire family. I know you all understand.

 

It seems to me, that the addition of lyme to the NIH PANS web-page, says that lyme may be considered one of many possible "triggers" which might, might activate the AUTOIMMUNE reaction we know as PANS.

 

Thus, lyme may be a "trigger" but the AUTOIMMUNE reaction is the causative force bringing this horrible reality upon my d.

 

It seems to me, that we got off track mucking around with the lyme issue of possible "cyst busting" using a potential carcinogenic abx, which in the case of PANDAS or PANS kids, may "bust" right through the "layers/walls" and enable the autoimmune reaction to explode. Could this be the case, I wonder? We don't know enough to know for sure, heck, that seems to be the root problem of all of this!

 

Maybe, just maybe one day autoimmune cascades will be found to be the root cause of many mental illnesses.

We presume that this is true for at least our rare (?) kids on this forum, for whom sudden onset OCD and ticcing, (and the host of other horrid symptoms) seemed to come on time and again when our kids were exposed to others with strep, or now others who are simply sick.

 

We tried the lyme treatments to treat "suspected" lyme, when in our case, i can't help but wonder if we should be just focusing on the real issue at hand, the autoimmune reaction -- and trying to put out that fire as quickly as possible.

 

just my thoughts, but I really feel strongly that we need to keep our eyes focused on the glimmer of hope we "know", thanks to the vocal few doctors who have shared their observations and experience.

[tpotter]

 

DS has PANS, which includes lyme, strep and other infections, and tindamax has worked extremely well for him...1 week on/1 week off. he has also been on bicillin injections for the last year, augmentin XR, and now is also doing ART. My feeling is that your child was probably herxing very badly, and definitely needs to do it slower. DS took an herbal remedy about 1 1/2 years ago, and called me having a terrible reaction (couldn't breathe.) We had to go to the ER, and afterwards, I pulled him off. Later, i found out it was exactly what he should have been taking, but was just taking too high of a dose. But, it scared him so badly, he refused to try taking it in just a much smaller dose. So, I don't think the problem is tindamax as a whole, but rather it's just too much for your D, and I will keep her in my prayers that things calm down quickly. And, I like the idea of making sure you do plenty of detox for now (we really like bentonite clay, and also use charcoal.)

 

Also, I agree that we have to keep track of the autoimmune process, but building up the immune system, so it can fight on it's own. What we found is that's important to treat all these things, but it has to be done, sometimes in babysteps.

Edited April 19, 2013 by tpotter

[kimballot]

DS 16 also had indeterminate lyme bands - only positive was 41 before first IVIG. Had an extreme PANS exacerbation after first IVIG and we started treating for "suspected" lyme. After 3 months of tindamax DS was extremely fatigued and barely getting to school.

 

We decided to stop tindamax and immediately saw improvement in OCD and fatigue. The problem was that 6 months later the fatigue became extreme again - only now with purple stretch marks (bartonella). UGH! Once again he could not get to school - but not because of tindamax this time.. just because of the infection. We HAD to go back and face the lyme/bart monster.

 

We started him back again on weekend tindamax about 2 months ago and he always has a HORRIBLE day the day after tindamax, but overall is making progress and is back in school part time.

 

I truly do not think he could have tolerated tindamax while his brain was in PANS exacerbation. Now that the PANS exacerbation has calmed down he seems to be able to tolerate it.

 

I feel like we are all walking on a tightrope trying to balance treatment of the infections with treatment of the autoimmune flares that result from the infections. I think that oftentimes it is not the TYPE of medication that is used, but the TIMING... and the biggest piece is monitoring how each individual child reacts to medications and supplements.

 

Kudos to you for figuring this out and following through!

[T_Mom]

I agree, we are all "walking a tightrope" hoping upon hope to teat our children effectively.

 

Tindamax obviously has some type of "other" property that gives it the reputation as a "cyst buster" among the LLMDs.

 

If a child has PANS/PANDAS, we would all agree that treating the triggering infection, whether it be "strep" or "lyme" or any illness, would be prudent and necessary in order to quell the autoimmune-cascade reaction.

 

What I keep coming back to in my daughter's case is that SHE IS HAVING AN AUTOIMMUNE REACTION (or so we believe), which needs to be treated to alleviate the ensuing brain inflammation which is attacking the basal ganglia and CAUSING the ticcing, and absolute crippling OCD.

 

Thus, we seek out immune modulating treatments -- be they anti-inflammatory antibiotics, immune modulating antibiotics, steroid burst, IVIG, or plasmapheresis.

 

The premise of PANS is that it does not have to be strep only. I get that, and so true for us, though strep in others is a trigger in our case.

 

Kimballot, I would be curious to know who and what type of doctor is treating your son--PANDAS specialist and/or llmd, alternative or mainstream? --thanks.

[philamom]

My daughter took Tindamax on the weekends for approx. 8-9 months, as part of her lyme/bart treatment. She had herxing 1-2 days afterwards each week. But, she also made great progress on it. The problem we had was when she received IVIG while on Tindamax (dd was receiving IVIG every 3-4 months at the time). Her herx was then severe. Her LLMD had us stop the Tindamax and continue with the IVIG.

 

So sorry Tmom.

Edited April 22, 2013 by philamom

[sf_mom]

There is definitely a balancing act between treatments!! Hopefully, your DD is trending better with upping the Augmentin XR.

 

I was thinking it might be helpful to rerun or run some of the following tests to help you determine what is "currently" the main driver of your DD symptoms.

 

1. CAM Kinase II: Autoimmunity

 

2. C3A, C4A: Inflammation Markers - http://www.publichealthalert.org/Articles/gingersavely/C3a%20and%20C4a.htm

 

3. Binding Immune Complexes: Indication of infections

 

4. Biofilms by Fry Labs: Biofilms and Infections: http://www.frylabs.com/biofilm.php