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Lyme Test Results for PANDAS Kids

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Hi Worried Dad,

Re: So, yeah... I think you called it right. I was feeling paranoid based on recent developments for other families on this forum. If the rest of our family didn't have stubbornly high ASO, we probably wouldn't have done the Myco p. and Lyme testing.


Like you, I was caught off guard by the positive Lyme results and clinical evidence of other coinfections. We found a Lyme clinician who also understood PANDAS. That helped give us peace as we began to tackle the Lyme etc. And, we have been able to keep him on his Augmentin XR.


Tears came to my eyes when I read this. If my posts were one of those that triggered your worries I feel very conflicted about that. One thing I do want to share: my ds14 (a PANDAS poster child) never had a positive strep titer. Ever. So our situations a very different. We ran strep titers on our whole family and none were positive for strep. Yet, ds14 had all the PANDAS symptoms you could ever imagine. This has confounded us for the, now 2 year, duration of his illness. DS14 has had good but incomplete responses to all manner of PANDAS treatments. I would not change a thing. (Except maybe having to go through this at all.) For my ds14 the positive Lyme test results were a surprise (we were looking into Candida and Mycoplasma) but as time went on they have begun to make sense for his individual clinical picture.


Amazingly, it is his PANDAS doc that wants us to slowly wean him off the Augmentin XR! But, that is because we have added Zithromax to his Lyme protocol. She says neuro-psychiatric Lyme looks a lot like PANDAS clinically. I hope you post your progress and findings as you continue to get treatment for your son. Thanks for sharing this - it helps!


P.S. Just got through reading the 4th and 5th pages of this thread about your visit to your LLMD. What a relief to hear that you are "on track" with the Augmentin XR! It is encouraging to see that there are doctors who can get beyond arguing over whether our kids illness "exists" and put their talents into evaluating the individual needs of each child. Thanks for a very encouraging thread!!

Edited by RNmom
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Great news ! congrats and stay the course (and keep us posted).

Do you remember what he ordered for neurotransmitter function? I've been reading about lipid replacement therapy for chronic infection and wonder if it might be the same stuff. Thanks!


It's actually a supplement called Neurolink: http://www.pureformulas.com/neurolink-180-capsules-by-designs-for-health.html .


At least, that's what's written on our receipt. It's backordered, but I'm assuming this is the product the LLMD is ordering for us.

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Thanks! I am looking into Lipid Replacement Therapy - recommended by microbiologist Garth Nicholson. He presented at the autism conference in July. Hes speciality is chronic infection...and if you google him and watch the hour + video on you tube, you can see some of the studies he's done.


His studies show that people with chronic infection, tend to have more than one, by the time its truly "chronic". He's more of a mycoplasma expert, he's the guy that discovered that "gulf war syndrome" was mycoplasma, and has some interesting views on mycoP and autism (or other chroinc infection ) when combined with multiple vaccines. (Just like the soldiers got before going to Iraq)...the you tube video was slightly inflamatory, but mostly good information. I've been emailing with him about my son's high extremely high titers (for mycoplasma).


Anyone reading this done any "lipid replacement therapy? The only one I seem to find is NTFactor (its a pill). Apparently it is used a lot in cancer and chemo for cell health and makes sense to me for our kids because both the disease and treatment (antibiotics) assault the cells. (esspecially the intracellular antibiotics). Who knows...he talks about cell "leakage" and polarity of cells, and makes me wonder if might help with integretiy of BBB too. I think Fish oil might be somewhat similar - I'm just beginning to research it.

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