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Maybe figuring things out a bit...


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If anyone is following my posts, I am doing that test with Ian (9) taking him off the antibiotic for a couple of weeks. He also had 8 IVIGs, with no result that we could see. The only thing that helped any is the prozac helped bring the OCD down. Well, since going off of the antibiotic his tics are back big time, and some of his compulsions are back as well. I was almost convinced he was not dealing with PANDAS, frankly. Now while I do not like seeing him like this, obviously. Part of me is a tad giddy. Those that are trying to find the solution and reasons behind things for their own kids will understand. It does give me an answer that we are dealing with some kind of autoimmune issue, or inflammation since he is dealing with this again. We are also treating yeast right now, but only on day 2. So, my thought on this whole thing is that indeed the IVIG wasn't helping. THe antibiotics he have been on helped some, but not enough after being on them for two years. Despite the fact that he tested negative, twice, on the Igenex Lyme, I am now thinking a Lyme connection may very well exist anyway. Something is in the way, but it is clearly autoimmune. Strep is going around his school too right now. I am going to make an appointment for the LLMD I have on my list to call. This little test at least, I feel, gives me a direction to go. We need to keep digging. Acceptance isn't where we are at. I was ready to accept he just had OCD, but with the change in his mood, tics and compulsions off the AUgmentin, it is clear something is truly going on. It also means I may eventually find the issue and be able to help him! I was worried he would be dealing with actual OCD for the rest of his life. But this may still be the right path after all. Just need to keep digging! I know it is odd that this makes me a little happy. I just felt at a dead end.....

 

Lisa

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If he is on only Augmentin, the problem may not be that antibiotics aren't helping, but that he needs another antibiotic in combination to give the extra boost. My daughter was on a single antibiotic for over a year and when we added another to the mix she had an immediate huge herx reaction. We had to back off a bit and then introduce the second antibiotic slowly. Now she is on full dose of both and doing much better. I would definitely see an LLMD. I imagine you will get some good advice there.

 

Dedee

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Thanks, everyone! He has been on combinations of antibiotics in the past, a few different ones. His last round was 3 different ones over a course of 8 weeks. It did nothing, at all, that regular augmentin seems to do. He has tried different antibiotics, too alone, and in combos. But Dr. B doesn't really treat Lyme, so I am thinking it may be a good avenue to explore even with the negative (according to the CDC) results. I do think sometimes our answers are more clues than real answers, so I will keep digging!

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We found much improvement when we discovered and began to treat yeast! Good luck, Linda

 

That is great! We are treating it now. WE haven't discovered any, but Dr. B thought it wise to try it. We are on day 4. We haven't one diet or anything yet. But one thing at a time.

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Dr b had us try fluconazol (spelling) & said that there wasn't really a reliable test for yeast. When Hunter did not improve, we all figured he must not have yeast. This summer we found a doctor that said that we should have him take a yeast stool test because he felt it could be yeast

(said that the reason they say a yeast test is not reliable because if it comes back negative, then it could still be yeast, but a positive is a true positive). Well, the lab personally called the doctor because Hunter"s labs came back with toxic levels of yeast (Candida Glabrada) the lab tested the sample againt many antibiotics and it did not respond to fluconazole! He put Hunter on Ketaconazole and then added Nysatin. ( not sure about either spelling...1:00 am here). Just giving you this FYI as you never know when someone elses break through just may be the ticket for you as well! Let me know how it goes! Linda. ( Quest labs does the stool test)

Edited by 3boysmom
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Dr b had us try fluconazol (spelling) & said that there wasn't really a reliable test for yeast. When Hunter did not improve, we all figured he must not have yeast. This summer we found a doctor that said that we should have him take a yeast stool test because he felt it could be yeast

(said that the reason they say a yeast test is not reliable because if it comes back negative, then it could still be yeast, but a positive is a true positive). Well, the lab personally called the doctor because Hunter"s labs came back with toxic levels of yeast (Candida Glabrada) the lab tested the sample againt many antibiotics and it did not respond to fluconazole! He put Hunter on Ketaconazole and then added Nysatin. ( not sure about either spelling...1:00 am here). Just giving you this FYI as you never know when someone elses break through just may be the ticket for you as well! Let me know how it goes! Linda. ( Quest labs does the stool test)

 

Thanks for that info! And very true. I think that is one reason it is a good idea for us to see another doctor in addition to Dr. B. The one I am thinking of, i believe, will look at these things as well.I am looking forward digging into some of this a bit deeper.

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Philamom- there is a code number 3968 and then the doctor typed: (yeast / fungal culture, stool)

 

You go to Quest and give them the orders and then they give you a kit and you take it home, follow the directions (yuk) and bring it back to Quest. Helpful hint...lift up the toilet ring seat and place siran wrap across the bowl (hanging almost to the water) put the ring seat down and have your child go #2 on top of the wrap....make sure you have on gloves and then you can follow the directions in the kit.

 

Good luck,

Linda

 

I just noticed another code in the corner, so not sure what it means but just in case: 112.85

Edited by 3boysmom
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