Update, getting worse

[Eliself]

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Edited July 9, 2017 by Eliself

[Eliself]

Edit

Edited December 7, 2016 by Eliself

[jan251]

I'm so sorry. I have a 15 year old dd too. Your parents are only trying their best, as we all are, through this complex maze. It's very hard to know the correct path forward. Try to keep the big picture in mind, inflammation causing neuropsychiatric symptoms.

 

If it were me, I suppose I'd ask them to take you back to the NP if possible. If the lyme was diagnosed by a blood test, that complicates the picture and I'd try to find a lyme-literate doc (LLMD).

 

There are a lot of angles for treating without pharmaceuticals, if non-pharmaceutical supplements would be more attractive to your parents. For example, they might consider NAC and inositol, which have some research for OCD, though like many other treatments, it can take weeks to see results after ramping up to dose. Also, curcumin - I recall when I first started researching PANDAS, there were some online anecdotes about some fortunate kids improving from curcumin alone, probably in part due to the anti-inflammatory effect. There are herbal protocols for lyme. Often people with PANDAS have vitamin deficiencies or imbalances due to genetic defects in methylation and very particular vitamins can help. Unfortunately, there are no simple suggestions and no PANDAS treatment is one-size-fits-all. There might be a number of pieces to the puzzle.

 

My only real suggestion is to keep the lines of communication open with your parents. Let them know about symptoms you are feeling, timing, severity, etc. Something I often say to my son with PANDAS is that I cannot read his mind - he needs to talk to me.

[Eliself]

Jan251, thank you for your reply and suggestions. Ironically, I am already taking inositol as I transition off the citalopram. I think the NP is considered an LLMD. Yes, the Lyme was found after a boatload of blood work. On communication, I so wish I could tell them what's happening, but I lose the ability to speak.

Thanks again for the suggestions!

[jan251]

If you can't speak, can you write, email or text to them? Really try to communicate things even if you can't use speech. (My speech triggers compulsions in my son, so sometimes texting him works well as long as we're not in the same room... because my touching the phone also triggers compulsions if he sees it, sigh.)

[rowingmom]

I would also suggest that you follow up on your lyme diagnosis. Because of lyme's tendance to suppress immune function, coinfections (bartonella, babesia etc.) are very, very frequently involved.

 

Bartonella especially will produce neuropsychiatric symptoms:

 

 

Psychoimmunology of Tick borne Diseases and its Association with Neuropsychiatric Symptoms

 

https://www.youtube.com/watch?v=7kG7BHlByeQ

[Eliself]

Thank you rowingmom. I think we're addressing Lyme, but I'm not sure.

On a different topic, does anyone have good resources for kids with PANDAS? I've seen so many Facebook groups, etc. for PANDAS parents, but nothing for kids/teens. I know I'm not the only kid with PANDAS, but I still feel so utterly alone. Any way to meet other kids and get support?

[jan251]

I'm not sure, but maybe try this group https://www.facebook.com/groups/129017327268769/

[Eliself]

Oh my gosh thank you jan! I didn't know about that group. You have no idea how much this means to me!

[rowingmom]

Thank you rowingmom. I think we're addressing Lyme, but I'm not sure.

 

 

I am suggesting you follow up on bartonella specifically.

Edited December 14, 2016 by rowingmom

[Eliself]

Rowingmom- What would addressing bartonella entail? More tests, I assume? I think I was tested for bart, but it was negative. Does that rule it out? Is treatment different from standard Lyme?

Thank you for your help.