nemom Posted April 2, 2013 Report Share Posted April 2, 2013 Hello! My DS8 was diagnosed with Lyme last Spring. He was also diagnosed with PANS triggered by the Lyme. For the last 12 months he's been on a combo of Zithromax and Omnicef and doing wonderfully. I am happy to report that he hasn't had much in the way of symptoms for the last 6 months and absolutely no symptoms for the past 3 months. He was never diagnosed with co-infections (not really any symptoms and lab tests all came up negative). We feel pretty comfortable that he is ready to move on to the next stage of treatment. Our LLMD feels that slow and steady wins the race with Lyme treatment. At the end of April, she would like us to add Tindamax, twice a week to rule out (or eliminate) the cyst form. If all goes well, we could try stopping all abx by the start of summer. Our LLMD doesn't think the Tindamax will create a huge issue for my son. Besides the Lyme, he is a very healthy child and hasn't had any issues with detox so far. I've come across many unpleasant Tindamax stories and it has started to make me a bit nervous. I've heard detox is key. I'd like to be as prepared as possible, so I'd love to hear your recommendations and advice! Just in case anyone is interested, here's what we've had great success taking since the start of our treatment: FloraMyces (am) Metagenics UltraFlora Synergy (pm) Vitamin D- started with 1000 up to 2000 Multi-vitamin Nordic Naturals Children's DHA Thankfully, we've never had a yeast issue using this combo of probiotics. Once we go off antibiotics, our LLMD plans to work in some naturals for awhile. I know she uses something for biofilms too. Thanks!! Link to comment Share on other sites More sharing options...
Hopeny Posted April 2, 2013 Report Share Posted April 2, 2013 I'm like you, I'm scared of Tindamax. I am using NAC which I understand hits biofilms, and DD is on Rifampin, which I have also read hits the cyst form. Finally I am starting DD on Banderol and she is already using Samento, Eva Sapi demonstrated that the Banderol/Samento combo hits all 3 Bb forms, however it was in vitro only and nothing has been demonstrated yet to work in vivo. That is important to be aware of as Erethroymcin (badly spelled, sorry!) works splendidly in vitro but does not work at all and is not used in vivo. I'm not planning to try Tindamx unless someone can convince me otherwise. Hello! My DS8 was diagnosed with Lyme last Spring. He was also diagnosed with PANS triggered by the Lyme. For the last 12 months he's been on a combo of Zithromax and Omnicef and doing wonderfully. I am happy to report that he hasn't had much in the way of symptoms for the last 6 months and absolutely no symptoms for the past 3 months. He was never diagnosed with co-infections (not really any symptoms and lab tests all came up negative). We feel pretty comfortable that he is ready to move on to the next stage of treatment. Our LLMD feels that slow and steady wins the race with Lyme treatment. At the end of April, she would like us to add Tindamax, twice a week to rule out (or eliminate) the cyst form. If all goes well, we could try stopping all abx by the start of summer. Our LLMD doesn't think the Tindamax will create a huge issue for my son. Besides the Lyme, he is a very healthy child and hasn't had any issues with detox so far. I've come across many unpleasant Tindamax stories and it has started to make me a bit nervous. I've heard detox is key. I'd like to be as prepared as possible, so I'd love to hear your recommendations and advice! Just in case anyone is interested, here's what we've had great success taking since the start of our treatment: FloraMyces (am) Metagenics UltraFlora Synergy (pm) Vitamin D- started with 1000 up to 2000 Multi-vitamin Nordic Naturals Children's DHA Thankfully, we've never had a yeast issue using this combo of probiotics. Once we go off antibiotics, our LLMD plans to work in some naturals for awhile. I know she uses something for biofilms too. Thanks!! Link to comment Share on other sites More sharing options...
rowingmom Posted April 2, 2013 Report Share Posted April 2, 2013 We have been using pulsed tindamax for a while, three days a week. We have been finding that the first day will cause a herx, in DD11's case it is mostly increased ticcing and a little emotional lability. Nothing truly horrible happened, although I was quite scared when we first started. The herx tapers off over the next 2 days, and by the fourth day we are back at baseline. I usually give an epsom salt bath the first and third days. We have tried two protocols with tindamax. The first was pulsing tindamax for three days per week, while continuing other abx for the other four. After a couple of months of this DD11 was not returning to her previous low baseline, and her recovery started to slow. Because her ticcing seems to be caused by a buildup of toxins, we felt that she wasn't able to detox properly from the tindamax pulse while her body was dealing with other abx during the rest of the week. The next protocol involved giving all abx in pulsed fashion, along with tindamax, for 3 days/week. After several weeks of this, she was no longer herxing during pulses, and remained at her very low baseline. I thought we were done, but then added one drop of grapefruitseed extract! which has increased the ticcing again. Everything else remains at a very low level. Link to comment Share on other sites More sharing options...
LNN Posted April 2, 2013 Report Share Posted April 2, 2013 It sounds like your LLMD has guided you well so far. And since your DS hasn't had major issues with herxing in the past, I'm not sure I'd be too worried about the tindamax. It was very harsh for my son, but he also herxed severely on other things as well (like omnicef). It doesn't sound like your son has the same obstacles. But if you're worried, you could also ease into it. Do one dose on a Friday night and stop. Then the next weekend, if all went well, do one dose Fri night and one dose Sat morning. If that goes well, on the third weekend, do a Fri pm/Sat am/Sat pm/Sun am schedule. This still gives you all of Sunday to watch for/deal with a herx without him having to deal with school. Because you've had such great success, I think it's worth listening to your LLMD - she knows your situation better than any of us and seems to know what's best. Better to ease in slowly and give it a try than to not do it and wonder later. That said, if this just doesn't sit well, listen to your gut. You can always stop abx and see what happens. Worst case, you re-start abx if he relapses and you do tindamax then. Link to comment Share on other sites More sharing options...
nemom Posted April 2, 2013 Author Report Share Posted April 2, 2013 Thank you all! I do plan to give Tindamax a try, but I will take your advice LLM and start slow. Link to comment Share on other sites More sharing options...
ptcgirl Posted April 3, 2013 Report Share Posted April 3, 2013 Tindamax led to a massive herx for mine. We stuck it out. She couldn't get out of bed for a month. A lot of pain and her pain tolerance is incredibly high. All the symptoms of Lyme (ones she never had before treatment) came out: chest cavity pains, joint pains, etc. Link to comment Share on other sites More sharing options...
T_Mom Posted April 6, 2013 Report Share Posted April 6, 2013 PTC girl can you tell me your child's weight and dose? We just started Tindamax 250 once a week for 90 lbs and it scares me. Link to comment Share on other sites More sharing options...
T_Mom Posted April 18, 2013 Report Share Posted April 18, 2013 (edited) I feel like yelling: Warning, warning!!! Tindamax had a HORRIBLE effect on our d (13). She has been out of school for over a month now with classic PANS OCD/ticcing. Regretfully, after testing for lyme (and 2k spent in one fell swoop), the blood results indicated the 'possibility' of lyme (some ind. bands) Tindamax was tried. We lasted two Saturdays, and then the prescribing doctor said to stop and to increase Augmentin instead. (We had a Sunday afternoon 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 PANS or PANDAS I cannot help but wonder (AFTER our experience these past two weeks) if the use of Tindamax actually could accelerate the autoimmune reaction -- make it worse -- by opening the blood brain barrier if your child is in a PANS AUTOIMMUNE exacerbation. I feel we all need to be very cautious about the misleading issue of LYME and 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 Sunday 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... well, it has been just too much. Edited April 18, 2013 by T.Mom Link to comment Share on other sites More sharing options...
nemom Posted April 18, 2013 Author Report Share Posted April 18, 2013 I'm sorry to hear about your negative experience with Tindamax, T.Mom. Thanks for sharing your story. I hope things turnaround soon. Link to comment Share on other sites More sharing options...
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