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On third month of Alinia (3 weeks on and 1 week off) and also had 3rd HD IVIG. Started Valtrex titrating up slowly 3 weeks ago. On Augmentin and Zith. for Pandas. On antifungal.

 

Some things ...not all though as we have had some gains for sure.....are getting worse over past several months...urinary dribbling that came for sure with PANDAS is now urinary incontinence during day only. There is also recent development of occas. shirt chewing (never seen before but heard of), and alot of things going in mouth.

 

Could this be because we are killing off Lyme??? Stirring up lyme? Any thoughts.

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On third month of Alinia (3 weeks on and 1 week off) and also had 3rd HD IVIG. Started Valtrex titrating up slowly 3 weeks ago. On Augmentin and Zith. for Pandas. On antifungal.

 

Some things ...not all though as we have had some gains for sure.....are getting worse over past several months...urinary dribbling that came for sure with PANDAS is now urinary incontinence during day only. There is also recent development of occas. shirt chewing (never seen before but heard of), and alot of things going in mouth.

 

Could this be because we are killing off Lyme??? Stirring up lyme? Any thoughts.

 

My son regularly chews shirt. Sopping sometimes

Tic?..Surpression of a different Tic?

anxiety?

i think sf mentioned to me parasites?

Ds used to grind teeth to the gum line prior to adult teeth.

 

If you are asking about today specifically?...because i was going to ask if any other kids are worse today as it is a full moon night.

 

But i too started a new form of liposomal artiminson(sp)today.

we are also 10days into valacyloveir.

i let him have a glass of A2 (jersey) cow milk today...

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This sounds a little late into the game for herxing, unless you have started something recently. DD11 usually has her herxes within a week to 10 days of adding/switching to something new. Just my thought - perhaps toxins have been slowly building and more detox would help.

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When was her 3 hdIVIG in relationship to every thing and how often is she getting treatments? Has the worsening happened since starting IVIG? Was she diagnosed with Bartonella? Was there any notable change when starting Valtrex? How high was her viral load and did she have several viruses? Why is she on Alinia 'parasites or Babesia'. Based on treatment of 3 weeks on and 1 week off I am assuming Babesia?

 

Couple of things are possible... she may not be ahead of infections and hdIVIG is just stirring things up because a specific infection is not being properly addressed. She can be having an extended herx from hdIVIG. She can be herx'ing from anti-virals (we noticed an increase in symptoms when treating viruses). When treating Babesia, we noticed an extended herx for at least 4 months in all our children. Alinia alone might not be enough to treat Babesia and Mepron needs to be added. Alinia is also an anti-viral, anti-parasitic and cyst buster so could be extended herx from particular antibiotic. I would definitely be contacting LLMD to sort it all out with you.

 

Fixit is right: Full Moon will impact symptoms that are specifically parasitic. Did you notice an increase in last couple days. Biting nails, teeth grinding, shirt chewing can be from parasites in the jaw cavities (Babesia is a parasite). But it could also mean she is low in zinc and you might also need to check for KPU.

 

Hope that helps

Edited by SF Mom
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If you find out what works please let me know! All 3 of my boys are/have been shirt chewers. One would actually chew the collars right out! Also, my oldest has been in an exacerbation for several months. One of his new symptoms is daytime urinary incontinence. So I am very interested to hear what it is from and what helps.

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Momcap and ALL,

That is us....recent oral stuff coming out as well as urinary incontinence Daytime only!

I am wondering if we aren't just uncovering a bunch of lyme(parasites) and getting these symptoms. Cyst busting with alinia and biofilm dissolving with herbs and lumbrokinase and whatever the carnivora does...cyst busting and antiviral maybe?? Alinia is antiviral.

Maybe time to slow down?? I just don't know the right answer.

Momcap, what are you doing that you think contributed to chewing and urinary incontinence?

Thanks for all the ideas.

My llmd appt. was rescheduled next week due to Sandy.

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My dd's herxes lasted months at a time and initially worsened a month into lyme treatment. I feel like the toxins finally built up to a level that her body just couldn't handle at that point. The things we did for detox helped the most. Advil helped too.

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When my dd was 3-4, she used to chew her shirts to ruins- literally.

On the bio-med boards, they said it was:

 

Yeast

Lack of Zinc

Parasites

 

I treated all 3, she pulled out eventually, (wasn't overnight of course) but haven't seen it since.

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When my dd was 3-4, she used to chew her shirts to ruins- literally.

On the bio-med boards, they said it was:

 

Yeast

Lack of Zinc

Parasites

 

I treated all 3, she pulled out eventually, (wasn't overnight of course) but haven't seen it since.

 

Interesting. NOw that everything i read over the years ago..have put me into an AH-ha place..i see how the 3 together have a relationship.

you know...how you read, and read, and get it..but don't...and try things, and they work, but not really, but something else is worse....to get to a bit of an awakening is good.

Edited by Fixit
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So much of this is guesswork, but in my view, I've seen the urine dribbling situation increase whenever the toxic metals are at play. This can happen from busting biofilm, or killing parasites. I wonder if the alinia is at play, given that it could be killing parasites. Another thing to be aware of with alinia, is that it has aluminum in it, as part of the coloring (the jerks!).

 

Doesn't mean it's toxic metals in your case, just what I've seen. But you might think about if you should be doing more than you are, regarding chelating the toxic metals (chlorella? EDTA? ...).

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Did not know about Alinia. I will have to see if you can remove the yellow coating off Alinia as you can the Valtrex. And we are supposed to move on to Mepron which someone told me has BENZENE in it.

 

I suppose that the issues are related to detox, uncovering parasites/bugs and maybe toxins from die off inflaming basal ganglia additionally. Will work on it.

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Momcap and ALL,

That is us....recent oral stuff coming out as well as urinary incontinence Daytime only!

I am wondering if we aren't just uncovering a bunch of lyme(parasites) and getting these symptoms. Cyst busting with alinia and biofilm dissolving with herbs and lumbrokinase and whatever the carnivora does...cyst busting and antiviral maybe?? Alinia is antiviral.

Maybe time to slow down?? I just don't know the right answer.

Momcap, what are you doing that you think contributed to chewing and urinary incontinence?

Thanks for all the ideas.

My llmd appt. was rescheduled next week due to Sandy.

 

Sorry, didn't see this until today. For us, the shirt chewing always happened before/during illness for my kids. If they started chewing I knew someone would come down with something very soon. Strep? IDK. My strep "carrier" DS was the worst chewer of all, literally destroyed dozens of shirts and even 3 jackets. Drove me nuts! My youngest had a bout of shirt chewing this fall. I did not see this behaviour at all last year when they were all being treated for lyme/bart, so I was really disappointed to see it resurface.

 

As for the urinary thing, DS9 had this twice very briefly during treatment for lyme/bart. I could not connect it to any med change or increase. But it did come along with a flair of all other symptoms, both times. The first time we thought UTI, but it was negative. Doc was still concerned so we got an ultrasound of his bladder and urethra. All normal. But by then the dribbling was long gone (only lasted a couple of days). When it happened the second time I waited it out, and again it only lasted a couple of days. But since decreasing abx in Sept, this has been a constant problem. And it's no longer just a few drips. Now he's changing underwear several times a day, asking for pads, and even wanted to wear a pullup one day (he makes fun of his brother for needing them at night, so this was a BIG deal for him to ask for one). So now this is a fairly constant and debilitating symptom. I connect this directly to weaning him off some abx.

 

We have not done any antivirals or addressed biofilms, so no connection there for us. We treated lyme/bart with 3 antibiotics, along with prophylactic yeast meds, and lots of supportive supplements. The last few months we were cyst busting. Despite great success, we are now weaning down meds, looking for plan B. (Doctor issues, long story).

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