read some worrisome Tindamax stories; it's not always like that, r

[stacestar]

Hi all,

 

so my son is doing really well; he's been on antibiotics now for about 12 weeks (amoxicillin for the first 5 and then amoxicillin and azithromyacin for the last about 7).

He symptoms are really tapering off; he's mostly left with occasional stomach aches, rare joint pain (knee) and occasional sore throat. (Stomach aches have been there from the beginning last fall, so I don't think it's just a abx side effect.)

 

Anyway, well, our doctor has proven to be a good one. At first she was hesitant to say it was lyme b/c of negative test, but after running many blood tests, and speaking with a dr. at the Igenex lab, she said she's very comfortable clinically dx my son with lyme, due to classic symptoms and the fact that as she said his blood work looks "remarkable" and since speaking with an Igenex dr. and understanding more why a child may test false negative.

 

Anyway, that's just my update and background info, now to my question:

 

she said she may (or will) put him on Tindamax soon to "clean up anything still there"

 

I understand it's for cyst forms, and I read that it's okay for children.

 

my question is, I've read (from older posts on here) that it caused an increase in PANS symptoms in some children.

 

My ds hasn't (thank you Lord) had any real PANS symptoms for months. He had a blinking motor tic from Oct. 30th until the end of Nov. (but it was virtually gone even by mid-Nov.) and really that's the only ticcing he had. And, he never had any OCD from this all to begin with. (A little obsessive about stickers in Nov., but that ended and hasn't traded itself for a different thing.)

and he hasn't had a wetting accident since mid. to late Feb.

 

I'm worried (that's my specialty-worry) that what if Tindamax would God-forbid bring back PANS things. But then I try to calm down and remember that he's doing very well and has tolerated the other abx very well, no major herxing, and also remind myself that he isn't having PANS now; I've read that some children do just fine with the Tindamax.

 

I'm wondering if there are people here whose kids have done fine with Tindamax.

I'll express my concerns to the Dr. and I wonder if maybe we started the Tindamax slowly if that would help prevent any bad reaction.

 

I don't want to do anything to mess up the good thing we have going right now. But I want to do what will help him get over this the best.

 

I've read about AL complex. Is that a natural equivalent to Tindamax? if so, does it cause any of the same negative reactions some have experienced.

 

Any other good natural and as effective, cyst busters?

 

This got long, and with several questions. Thanks for any thoughts!

Edited May 8, 2014 by stacestar

[rowingmom]

If it does cause a flare in PANS symptoms I found them to be temporary and indicative of a die-off reaction which will resolve.

 

Tindamax is strong and unlike combinations of other abx DD was prescribed, she wasn't able to detox through her tindamax herxes without taking days off.

 

With any combination not including tindamax, we would see an initial increase in symptoms due to die-off. As we kept up our detox regimen (daily lemon juice, epsom salt baths, psyllium husk, LOTS of water, magnesium and probiotic supplementation) the reaction would resolve within 7-10 days and remain at baseline until the next change in protocol.

 

The addition of tindamax to the protocols just caused ramping of symptoms (for DD they were long bone pain, motor/vocal ticcing, emotional lability, decrease in fine motor ability) with no resolution.

 

For this reason our LLMD started pulsing the tindamax combos. 3-4 days on everything and then 4-3 days off. With these breaks in treatment DD was able to recover during off days. After 1 month's worth of pulsing I noticed a decline in the level of herxing. The initial herxes with each pulse continued to decline, until when DD wasn't really herxing too much any more, we decided to wean. The LLMD wanted to discontinue treatment at that point, but I was not convinced that we had achieved full remission. For that reason we continue with herbal protocols.

 

If your doctor is thinking about using tindamax, I would suggest pulsing, especially for children. It really does pack a wallop. Be prepared for the first couple of doses, but know that the symptoms are die-off related. Reassure your son when he sees this happening that it's temporary. Allow time for detoxing. Chart symptoms against protocol - you will see all of this happening in the graph.

 

A-L complex did nothing for DD. A-Bart caused herx symptoms, but after 6 months of high dose A-Bart (30 drops 3x daily along with abx combos) we still weren't rid of bartonella. For us, 3 months of Cowden did nothing (no herxing no improvement), 1.5 years of A-L (20 drops 3x daily) did nothing (no herxing, no improvement). 1.5 years of A-Bart caused herxing (and still does) but no improvment - so I have given up on it.

 

DD had serious reactions to GrapeFruitSeed extract which is supposed to be a natural cyst buster. Here are my thoughts on that:

 

http://latitudes.org/forums/index.php?showtopic=22660&hl=

 

We are seriously doing better now on Buhner's Bartonella/babesia protocols than we ever did with abx. Whether the initial abx were needed to lower bacterial loads before we began the herbs, I'm not sure. Buhner seems to think that this may be the case for many people.

Edited May 8, 2014 by rowingmom

[stacestar]

thanks rowing mom,

 

Our next appt. is still a month away so it wouldn't start until at least then, but I wanted to get some opinions and advice in the meantime, so thank you.

 

If our dr. doesn't mention the pulsing of it, I'll bring it up to her so to go gently. Again, so far so good for my son, but I don't want to upset that, yet definitely want to do what it takes to help him get through this.

 

I still haven't read those Buhner books, but intend to, b/c as my son moves along well, I like the idea of using herbs once the abx are done just to make sure it's all taken care of too.

Not that we're done with abx yet I know, but I'm just thinking ahead with that.

 

Thanks rowing mom for sharing you info and experience.

[rowingmom]

Geez - I feel like your mother too - Read them!

I still haven't read those Buhner books, but intend to,

[stacestar]

rowingmom, ok I will!

 

seriously though, I have wanted to look into the herbal option/ideas, and it's true that I think now is a good time. I know my son is on the right track and making good progress and so I want to do the abx for what the llmd recommends (a month past last symptoms), but I also want to read about the more natural route, the herbs; to know options, understand it, and perhaps implement it at some point, to make sure it's all gone, like you said. It's been a one thing at a time thing, and now that I feel comfortable with our dr. and my son's treatment and progress I do want to read them.

 

thanks for the motherly nudge (or kick in the pants).

[rowingmom]

This was my attitude as well; to start out using abx with the help of a knowledgeble physician, to get myself on track with infection etiology and symptomology and then proceed to a more natural protocol.

 

You will learn more than you can imagine from the mycoplasma/bartonella book. Buhner's ideas on infection and the immune system are different from the mainstream, but that doesn't mean they are wrong.

 

We used a couple of the broad spectrum herbs and his anti-inflammatory throughout the last 6 months of DD's treatment, perhaps providing the additional antibiotic boost that was needed both to decrease bacterial load and to support a proper immune response. Buhner maintains that his herbs can be used along with abx and we did find improvement with low doses used concurrently.

 

I kept an eye out for adverse reactions (which I assumed would appear to be different from symptoms she was already experiencing), and we checked CBC/CMP monthy. We had no issues.

[ktdommer]

We do tindamax 2 days a week, 5 off. I herxed with primarily fatigue at first. Now I take it without issue. Son with PANS also herxed at first. No increase in movements. We have been taking tindamax for 3 years. It is important to Lyme treatment.

OUr ILADS doc has us treating 6 months past any symptoms and never takes patients off in the winter.

[stacestar]

thanks ktdommer for your reply.

 

Six months past treatment is the longest I've heard of yet. But I guess that would really make sure you were symptom free then. Our dr. says one month past symptoms, but I can see how that may be harder to know or figure out, since so many things cycle, some by month even sometimes. I do keep pretty good records of my son's symptoms, but I wonder if maybe my llmd would go a little longer, if even by just a little bit. It's also one reason I'm interested in the Buhner, b/c then something could still be treating just in case, even when off the abx.

 

A question for you ktdommer, why the not going off treatment in winter? Is it b/c of flues and virus's going around, and not as much sun for vitamin D (although a person could supplement so maybe not that)?

 

Thanks again.

[rowingmom]

 

I do keep pretty good records of my son's symptoms, but I wonder if maybe my llmd would go a little longer, if even by just a little bit. It's also one reason I'm interested in the Buhner, b/c then something could still be treating just in case, even when off the abx.

 

 

That's exactly why we are continuing with herbals, and probably will for another year or so.

 

DD is doing so well now that I want to keep supporting her while she continues to heal physically and neurologically. She told me today that lately she is noticing improvement in both gross and fine motor skills (shooting basketballs and cutting with scissors). She is noticing this herself. Her teacher has already commented.