My son the contrarian

[Bill]

No other reason to post than for folks with children (or themselves) who may not fit all the symptoms and/or respond to treatment the same way as many...

 

So I've mentioned before that my son is NOT sensitive to light (even when his pupils were at the largest) or how we have to keep telling him to turn the TV down (not sensitive to sound at all). This of course is opposite many kids here who have light and sound sensitivities.

 

Well - now we can add that he seems to be doing better without probiotics than with. He's complained from the start about them saying they made him worse. So - last week I let him call the shots in regard to the probiotics. He claims his bowels are - and admittedly seem - better.

 

Detox? Just bought charcoal tablets and bentonite clay. He won't have anything to do with them. They sit on the counter mocking me.

 

Happy Friday.

 

bill

[pixiesmommy]

Interesting. Have you done NRT/ART? The theory is that you actually do know what your body needs, so maybe he does?

[Bill]

Interesting. Have you done NRT/ART? The theory is that you actually do know what your body needs, so maybe he does?

 

 

No - in all this time, I still do not know what NRT/ART is? Can you explain it in simple terms?

 

And yes, maybe his body does know. That and he's close to 13. It might simply be that he needs to call the shots on something to feel in control. As long as I don't see any negative signs.....

 

Thanks, bill

[Suzan]

Interesting! I have noticed my dd8 does not respond well to omega 3's. She gets much worse on them regarding her behavior. She is also not sensitive to light or sound. She does not express herself well so I don't have much insight into what is going on inside her.

 

Susan

[lismom]

Bill, you may want to play around with some other probiotics. I believe one very important aspect to healing my 13 year old Lyme/PANDAS son's gut is the probiotic I finally bit the bullet to buy. How long has he been on one? What kind are you using? You will find that it takes much more billions cfu and a better product to really help these kids on high dose antibiotics. I personally wouldn't stop for to long. 80% of the immune system is in the gut.

[Bill]

Bill, you may want to play around with some other probiotics. I believe one very important aspect to healing my 13 year old Lyme/PANDAS son's gut is the probiotic I finally bit the bullet to buy. How long has he been on one? What kind are you using? You will find that it takes much more billions cfu and a better product to really help these kids on high dose antibiotics. I personally wouldn't stop for to long. 80% of the immune system is in the gut.

 

 

He was on Custom Probiotics CP-1 2 daily (Acidophilus + Bifidus, 50B) and Saccharomyces Boulardii + MOS 5B/capsule X 3 daily since early January. Prior to that, it was Florastor 2 daily (Saccharomyces boulardii, 250mg) and Probiotic CP-1 2 daily (Acidophilus + Bifidus, 50B) for a couple of months. He complained about that just as much.

 

He will eat yogurt when we remind him. His stools remain fine. We only started him on the probiotics on the advice of those here. We are also off the augmentin for now (currently on minocyclin, azithromycin, cedax, tindamax). Our doctor mentioned that augmentin is the really hard one of the GI system.

 

 

Worth noting that he does not really herx like most here. We see gradual changes. Still seeing bumps on the weekends with the tindamax but nothing drastic.

 

bill

[lismom]

It looks like you have a good probiotic. My son seemed to not tolerate the sacc b. I did have to stopped that one though. Some one on the board said they have to alternate one day bentonite clay, next probiotic. Maybe that would work. If your just using bentonite clay wouldn't your son take it?

[MichaelTampa]

One thing I want to point out is my experience of needing probiotics. I use energy testing (pendulum, actually) to determine my needs. (Very helpful, rather than guessing, which is what most people and doctors are doing.) So when I say what I was taking/needing, it's really based on something. When I started lyme treatment with IV and tindamax/alinia (rotated between tindamax/alinia), I needed about 125 billion about every 3-4 HOURS. This was for several weeks. Very expensive, by the way. Anyway, it calmed down over time I needed less. Then IV stopped for insurance reasons, stopped tindamax/alinia as well. Picked up with orals of tindamax and factive eventually. Again, more probiotics needed, more than where I left off, but it reduced quickly, eventually added ketek, needed way more probiotics again, but again reduced. I am really getting through treatment, almost done, and at very least, the abx are doing less and less these days. Now I take probably 40-50 billion per DAY, even though now it is 3 abx, going through the gut, which should mean there would be more need. All through this I have been taking nystatin as well, which again has gone from extremely high dose to more normal dose. So my point I am trying to make here is, you might seriously consider how sure you are that these abx he is taking are really the right ones, really doing the killing you're looking for.

 

Of course, there could be other reasons none of us understand for why he needs less. But, I would say, consider the abx a little, or need to treat parasites/worms first, or a coinfection first, or add biofilm enzymes, ... hmmm...

 

On the ART, autonomic response testing, lots of names for this. Picture your son holding a bottle of pills up against his chest, near his belly button. With the other hand, he is holding it straight out away from his body (horizonal, parallel to earth). You and he are consider questions, 1 at a time, like "is this good for [me/you/DS name]", "1 per day", "2 per day", "3 per day", "best with food", "1 at breakfast and 1 with dinner", and so on. While each question is contemplated, you modestly push down on his arm, and he resists somewhat, and if he can keep his up, the answer is "yes"/"true", otherwise "no"/"false". There are a variety of positions and muscles that can be used for this, that is a common one that practitioners use. I would not expect you to just be able to do this well without any real teaching face-to-face, there is some skill involved, and knowledge of acupuncture or energy medicine certainly can help. (But perhaps give it a try, just for fun. It's good to learn with questions you know the answer to, like, "my name is Michael", would return a "yes", as in "true" for me.) But there are plenty of acupuncturists and other health care providers out there than can do this for people, and some are probably nice enough that they would teach you to do it.

 

I have heard some compare this testing to lie detectors, I suppose it's a reasonable comparison.

 

I use a pendulum, some kind of stone hanging from a very thin chain. I get it moving softly in a bit of an oval direction, clockwise or counterclockwise, whatever, more forward and back than left to right, then put the substance on my belly, and ask the question. If it moves towards pretty straight forward and back, that's yes, not-so-straight-forward-and-back is no. I've tried lots of ways, this was the only one I could learn. Somepeople learn really easily. There are ways to test oneself with muscles too, some youtube videos someone did, maybe he called it muscle test or applied kinesiology test, don't remember.

[pixiesmommy]

ditto what Michael said- ours was NRT- nutritional response therapy, but same thing, and done by a chiropractor.

[lyme_mom]

ditto what Michael said- ours was NRT- nutritional response therapy, but same thing, and done by a chiropractor.

We have been able to have muscle testing done by at least five different practitioners so you can definitely find someone to do this. We live near DC so we have wonderful options in this area. Muscle testing offers another clue in the guesswork involved in diagnosing and treating. Not all kids are sensitive to light or noise and not all kids herx. Some just improve. I agree that I would not want to go without probiotics of some type for too long because the antibiotics will wipe out all the good bacteria in the gut. Maybe you could gather your probiotics and bring them to a muscle tester for evaluation. Also bring the other stuff he is on b/c sometimes they said this is good for him and so is this one but not the two things together. That happened with us. The testing showed that samento was good for my son and so was an antibiotic but together they were not good. We stopped the samento. Perhaps there is an ingredient in the probiotics that he is sensitive to. There may be other things you can do to protect the gut in the interim and a naturopathic doctor might have some ideas. I don't know. We had a wonderful naturopath in town who always had an easy remedy or nosode for any issue. She asked tons of questions to figure out which would be right. She asked things like do you prefer your water with ice or without? There were so many questions but it helped her find the right remedy to put the body back in balance and it worked quickly. We did not have her through the lyme treatment though because she got a new job but it was powerful medicine. She also missed the lyme diagnosis but then again most people do unless they are lyme literate.