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Frustrated- DD not eating continued


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Would you feel comfortable posting a list of what she's been tested for? I think you would get a lot of feedback on what you're missing and might want to request. The "we've tested for everything" res

Sorry your daughter is still suffering. For my girls, pandas is clearly an autoimmune disorder. We typically do not see a resolution without immune modulating treatment (ie steroids, plasma pheresis).

yes, sorry-- NC! I knew that! My brain's not working too well today... I am slipping into a bit of a depressed funk myself right now. My daughter's episodes/symptoms of this weekend and refusing school this morning and our impending 1 hour drive to Yale this afternoon when I have a million + 1 other things to do is getting me down. :( This has "only been" 6 months for us, which I know that compared to many on this forum isn't a long time, but it's been a lifetime's worth for me. I still can't believe all of this is happening sometimes, and I so desperately want it to be over.

 

Anyway, going that far out of state isn't an option for us at this point. Although I should probably start considering it now because I'm sure planning will take months, and if we're in this same boat months from now, I don't know what we'll do.

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It sounds like you have an LLMD who's telling you he sees evidence of Lyme in the symptoms and cycling of symptoms, so I would trust that. However, I know how hard it is to just take someone's word, especially when you aren't seeing the results you need in a reasonable amount of time. We had negative Lyme tests for years before going off abx and retesting with the Advanced Labs culture. Have you tested through Igenex yet? They test more of the relevant bands, so there are less false negatives (although there still are, as in our case).

 

Also, if she is being exposed to any indoor mold, this can really hinder Lyme treatment. I would suggest getting a kit from MycoMetrics and testing your house. Even if you don't see mold, it can be hidden. Many people on here have eventually found that mold is an issue for their kids. Once you have the results from the test, folks on here can help you interpret, if your doctor doesn't know how.

 

Something called KPU, which is basically certain vitamin deficiencies, can also hinder Lyme treatment. You can search for KPU discussions on the forum. There is a test for this also, which your doctor should know about.

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  • 2 weeks later...

Update- Session #6 CBT. No significant changes. Still on azithromiacin, Augmentin, Cla-K detox and Drainage Tone. No significant behaviors (funny that I just wrote that, and then remembered that she had a somewhat sizeable upset on Mother's Day, which was only 5 days ago!) but underlying agitation most if the time, gets worse when even a tiny bit tired. Or when she has homework. Seems lethargic at times, is often mean. Still not eating, although she is expressing a bit of interest just recently. Still not enjoying school, doesn't want to go. Expresses separation anxiety at times.

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I understand the fear, we were hospitalized with a 25lbs weight loss. The NW conference said that 1:5 had eating issues. I didn't see any tests for HHV, Human Herpes Virus 1,2 and especially 6. Any IGG titers over 4 should be addressed. We had immediate gains both in behavior and weight on Valacyclovir. Start slow and increase. Read Dr. Montoya from Stanfords protocol.

 

Boost is full of pesticides and GMO corn syrup which will cause issues in our kids. I would get an organic alternative. There is one which we used to eliminate Alzheimers in my father-in-law. It will raise and drop blood sugar,increase glutamate, chelate zinc which is HUGE for anorexia.

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Can you share the name of the nutritional supplement you used for you father-in-law?

 

Boost is full of pesticides and GMO corn syrup which will cause issues in our kids. I would get an organic alternative. There is one which we used to eliminate Alzheimers in my father-in-law.

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Beerae22--CBD oil--some on here have been buying from www.bluebirdbotanicals.com.

Now DS stomache is fine but would have tried it at the beginning of treatment when he had horrible stomach pain after eating and did not want to each much.

It is antibacterial, antiviral etc. so you would want to start low/slow in case of die-off.

We are trying some at a low level for brain healing purposes.

Edited by juliafaith
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