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What progress have you seen lately?


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Wow...that's great progress...congrats Kara!!! :-)

 

I've been wanting to respond to this for a while and finally have both the time and the energy. It's so great to hear stories of improvement. I feel and pray for those of you who are still not getting results.

 

Two and a half years ago, my dd frequently wished aloud that she wasn't alive. One and half years ago my dd asked by dh to kill her. The other day...she said she wanted to be 10 forever.

OCD that was at one point completely interfering with her ability to go to school, to play with her friends, to eat, to sleep, in other words, to LIVE, is gone.

She's happy, engaged, wants to be involved in things. She hugs me. She gets dressed in the morning before coming to breakfast. She showers. She eats. She gets to school and gets there on time. She does her homework without melting down. She plays with friends. She is living!!!

 

For the past few years, DS would always complain of not feeling well: sore throats, stomach aches, body aches. He also complained of always feeling either very angry or very sad (and he acted that way as well).

He hasn't been sick in months. He's swimming on a swim team, acting in a play, getting along with other kids. A huge improvement all around.

 

We've only treated with oral antibiotic combinations, including cyst busters, probiotics and some minor detox. No IVIG or PEX. It did not improve overnight. It's been a slow road, with many ups and down. But I am optimistic that we are close to the end of this journey. (And I really hope I'm not tempting fate, here.)

 

I feel like I'm making up and down progress...sometimes it's so hard to tell...and it frequently changes. If anything, I'm better because my kids are!

 

Kara

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I have been off all abx for Lyme and Bartonella for months and so far I feel great. I thought I was slipping at one point (sore heel again) and tried A-Bart challenge but saw nothing after getting up to 20 drops. My D levels are up around 65 and all tests are within normal range. I have not yet done anything for my heterozygous 677 MTHFR.

 

My DD16 (LYME, Bartonella, PANDAS, homozygous 677 MTHFR) is still battling severe anxiety/OCD (her only symptom left). We CANNOT seem to find the key to unlock this. VERY frustrating since it's so debilitating for her. She is still on Augmentin XR and Azith, but off the other abx. Thankfully she has not had an active infection or exacerbation in a very LONG time. Although her anti-DNASE B levels have been elevated lately. Rages, tics, joint pain, and other symptoms have been gone for over 2 years so we are very grateful for that. She just spent 3 mos at OCD Institute/McLean and did very intensive ERP and other therapeutic work there. It's a FANTASTIC program!! Now that she's back home we will focus on MTHFR (try Leucovorin) and then double back to A-Bart challenge. We'll check glutamate, homocysteine, and other levels this month.

Edited by NancyD
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Suzan,

 

I'm curious, how long did you have the buzzing and how long did it take to go away? It is one symptom that has not budged one iota for me and it can be infuriating. I don't have it in my back, just my head. It's constant buzzing and occasional ringing.

 

Glad you're clearly on the mend and that your kids are improving as well.

 

LLM and Nancy D, thanks for your cheers!

 

Kara

 

 

The buzzing in my back and head is finally GONE! (knock on wood :lol: ) and all of my bad lyme symptoms are gone. But you probably were asking about the kids :)

 

 

dd11's pain is GONE! Emotional outbursts don't last all night anymore.

dd9 eats more than a teenage boy (seems like it anyway)...had perfect attendance last year! Not sick once. She can read and write now.

 

There's lots more for us I'm sure but those are some highlights. We are busy stirring things up right now and I know things can ebb and flow but we have many happy stories to share!

 

Susan

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DD has been going to sleep and staying alseep in her room for the first time in 2 1/2 years, actually to when she first got Lyme symptoms. Anxiety is significantly reduced and suicidal ideations seem gone. (negative comments pop up but nothing like before) DD is handeling upsetting situations just about normally. Handwriting is much better. Hip arthritis is gone and she can sit on the floor like a typical 8 year old. Stomach pain is gone. She has not fallen. She wakes up in a good mood. Lethargy is mostly gone. DD's skin is soft and not like sandpaper. DD's body temp is normal and no longer 95/96. Getting along much better with her sister. She is only picking at one part of her body instead of two, and goes some days without. We still have a long road but I'm not going ino that here, I like the idea of focusing on the positives - I am so so very thankful for every single step towards healing.

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