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nitshel

Beyond Lyme...What have we missed?

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Should have, could have, would have....

 

I wish we had investigated mold much earlier in our Lyme treatment process. Mama2Alex really pushed me on this one and we are grateful.

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Thanks - I'm looking for a mold specialist - checking to see if we have any ERMI tests available near home. Any tips on where mold loves to live? Our house is not that old (13 years old) and in good condition.

 

Is Bathrooms a key culprit? Air vents? Inside walls?

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You don't need a mold specialist to run an ERMI. Just call Mycometrics in NJ and they will send you the kit. You just vacuum a 6'x3' area for 5 minutes in a common area and one bedroom, then send in the dust. This will give you a good idea of whether you've got mold or not. If you don't, great! If you do, then you either need to move or find someone to help you figure out where the mold is so you can remediate. It can be anywhere, but seems less likely if you have a newer house and haven't had any known leaks/water damage. It seems worth "ruling out" though, since you haven't seen improvement with the Lyme treatment.

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My kiddo has vocal tics from viruses. Though we started on this journey with positive strep, her biggest hurdle, IMO, has been all the viruses. My siggie shows the ones she has. We also tested for mycoplasma, lyme, CMV, and a few others she did not have. Sadly, she is positive for more than she was negative for.

 

We have been on Buhner's since 05-05 and we have been at full doses since about 06-10. She seems to be doing better on the whole, and she overcame a sinus infection with only a little regression.

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Update from us. We had the home tested for mold - came out very clean. We also had an appointment with LLMD - she says it is very normal for symptoms to worsen when one encounters a new stressful situation (in our case, summer camp) because the immune system gets stressed - and that the flare will die down slowly. She says there is no indication to treat for parasites....

 

Has anyone else had a similar experience?

 

Its been 3 weeks now and the tics are just as bad. We had a month of heaven when psych meds were way down - now we are back to original dose (and even then they are still there)....still not sure what could have triggered the regression.

 

The only clue we have is that DS was sniffling the day when symptoms returned with a vengeance.

Any advice from the sleuths out there?

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Did your LLMD suggest a change of antibx/ different infection? Could it be yeast/ gut?

 

It seems our kids are alike. We also had a very good summer- then school started last week.

Very stressful for dd. regression at home. Seeing a new tic/ compulsion with her legs- I've never seen it before- started before school started- we've had no med changes.

 

The hard thing: so stress makes the brain barrier more permeable, more attack on the basal ganglia?

So how am I suppose to fix that? The kid leads a pretty stress free life, wants to go to school, home schooling out of the question.

 

HD-IVIG- helps seal the brain barrier? As long as infections are very down? I don't know.

We have appointments next week with our specialists, will probably switch up antibx.

Meanwhile, I realized I was also very stressed around school starting, and it was making it worse.

So now I'm trying to chill out more. Can't control it all.

 

We have updated all testing, that has been revealing.

Anyway, hang in there--

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Well, my post led me to research blood/ brain barrier, interesting, thiamine B-1 deficiency came up

(in relation to MS relapses) and found a smart bio- med mom say recently adding thiamine was a wow.

I am going to try it-

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Thanks sss - please let m know how it goes with the thiamine (what brand?, what dose?). As far as yeast /gut issues we've been very good about Nystatiin 2x/day and probiotics every night so I dont think that is the trigger.

 

Its funny but the common symptom (and this has been a common thread for years) is the on again -off again sniffling / cold-like symptoms. Sometimes they are slight and sometimes pretty badHe has a mild case right now. Its likely NOT something he caught from anyone - it comes and disappears in 1-2 days and is worse at night - very unlike a normal cold.

 

Is this lyme / co-infection? Is this persistent strep hiding out somewhere and biding its chance? Is this an indication of immune malfunction? Does anyone know?

 

Thanks

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