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New eBook: Your Child Has Changed; Should You Consider PANDAS?


Have you seen the ACN Latitudes PANDAS eBookOur helpful book is a 37-page primer in a friendly question & answer format.  This eBook contains useful information to understand the symptoms of PANDAS, how it is diagnosed (including lab tests), the different types of treatments, approaches for prevention, and how to find the help and support that you need. Learn more

 




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Amazing progress and testing update


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6 replies to this topic

#1 suzan

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Posted 30 March 2012 - 05:04 PM

We spent an amazing day at an outdoor center where we went rock climbing, boating, climbing on a rope course and a zip line. A year ago, heck, 6 months ago, this would have been unheard of. We were on the go for 5 hours, very physical and outdoors. I was freaked about tick exposure but we went anyway. It was amazing that we were able to do this, all three of us. We will probably be sore and tired and wiped out but we all did very well.

We saw our wellness doc today. dd9 got the results of her organic acid test and she had similar results as several years ago which was disheartening. But maybe now that the lyme is more under control, we can treat some of these other issues. Doc gave us CoQ10, riboflavin, magnesium, glutathione, P5P B6 and also Niacin, and stuff to support the neurotransmitters. That's all in addition to the other stuff she's already on.

Results: Low B6, High Yeast, high hippuric acid, high succinic acid, high citric acid, low HVA, low VMA, low 5-htp

Susan

Me - diagnosed with hashimoto thyroiditis in 1996, lyme and parsonage turner syndrome in 2010, mthfr mutation in 2013

dd10 and dd11 - diagnosed with sensory processing disorder in 2006, gluten intolerance in 2007, pandas in 2008, lyme in 2010, mthfr mutation in 2013

 



#2 Fixit

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Posted 30 March 2012 - 05:22 PM

Susan,,,so happy about your recovery.
I'm glad you and your girls were able to enjoy a wonderful day together.
A little soreness tomorrow will only add to the details of your story of your great time together!
you know...battle wounds.

#3 nancyd

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Posted 31 March 2012 - 12:54 AM

This is GREAT news about you and the girls, Susan. Yah!! Keep it up!! Hugs!

#4 llm

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Posted 31 March 2012 - 03:21 AM

Yay!!!! So happy for you guys! To think that you could someday take all that money spent on treatment and use it for making many more happy memories....awesome!

#5 sss

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Posted 31 March 2012 - 05:42 AM

I loved your post :-)
In case I've never told you, I am a bit in awe of you- Going through Lyme treatment yourself, working full time, while supporting two girls going through Lyme treatment.
You are a strong lady, much respect, please keep posting your journey, helps the folks like me.

I am collecting for my dd's OAT this very weekend- I need to see what is going on in her gut- suspect we might have some issues that we will need to correct to try and get back in balance.

Yahoo for the happy memories! I am going to try and create a few too this upcoming Spring break week- taking the kids on a 2 day trip to San Francisco (we can drive there) and then my dd is turning 7 and will be having her first 'real' birthday party with school friends.
Things I have always been afraid to do in the past, with the unpredictable nature and feeling too stressed to try- we have never even really taken a vacation all together.
But I am learning myself as I slowly heal to learn to try and have some fun, and make some happy memories if we can.

Edited by S & S, 31 March 2012 - 05:47 AM.

Daughter 9, PANS, probable congenital Lyme,
started biomedical treatments w/DAN! and GF/CF at age 4
Cam K 175, 2 HD IVIG's, 2 LLMD's- had improved, but still challenging in areas at times.
Mom-tested positive Igenex PCR Lyme, and positive Bartonella, 2011.
Both of us have treated, dd9 had long break, now she is back in tx for Bartonella.

#6 sf_mom

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Posted 31 March 2012 - 06:10 AM

Great update!!!!!! AND, I am with you on having "a life" amongst health challenges.

#7 juliafaith

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Posted 31 March 2012 - 11:46 AM

So glad you were able to get out and have some fun! We are going to go to a local science center and meet one of my ds xbox friends for the first time this coming week. We are hoping he will be well enough to go and not sure how he will feel the next day - but do not want to stay in a 'bubble' and have to capture that fun whenever possible!

Sounds like you found a few more things to work on, health-wise. My ds just got a yeast infection again and his dr. said it was from excess die-off. So, being treated with Sporanox for 6-12 weeks. Keep healing and posting! Best wishes.

Edited by JuliaFaith, 31 March 2012 - 11:47 AM.

Ds16: 5/10-PANS; 10/10 -lyme; Babesia [parasite]; Mico. & chlamydia pneu.; mold; T&A done; GcMAF done 12/13;  1st Strep Pos. 2/14.
Current treatment-    Maintenance:  Vit. D; Detox [Chia seeds];  probiotic;  Kidney detox drink-electrolytes/'M' Water/Galactose   PANS Support: (Myco Potent Immune Complex; Biocidin (anti-bacterial); Kidney tincture.
Prescriptions/Treatments:  thyroid; Desmopressin [Urinary tract support]; neurofeedback (weekly) Psychologist (bi-weekly);  hydroxyzine (antihistamine-sleep during flair); Exercise (finally!)<p> 





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