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Nela

Pandas docs who will consider infections other than strep

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Hi all,

 

Who of all the Pandas doctors ( Dr. T , Dr. L, Dr. B, etc) is willing to consider infections other than strep as possible triggers for Pandas tics. Dr. K is only considering strep for my 5 year old DD's Pandas symptoms. I would be interested to find out if we are dealing with Myco, Lyme, and/or other infections/viruses.

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We have no experience with any of the PANDAS doctors, but when I discussed PANS with our ILADS-trained LLMD, she was quick to assure me that PANS symptoms would resolve with treatment for DD's lyme coinfection bartonella. They have.

 

Properly trained LLMD's seem to recognize the fact that other infections can be responsible for brain infammation.

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All of them. PANS is the PANDAS alternative when strep is not the trigger. the difference I am aware of is between other and lyme triggers. Some PANDAS drs are better at considering lyme than others. So, if you suspect lyme, you may want to do PANDAS dr as well as lyme specialist.

 

another thing, you actually don't need a PANDAS dr to do a blood test about myco, lyme, other infections. any dr should be able to order it.

there yet another thing, and that is, treatment. for most post-infections auto-immune conditions basic treatment is the same or similar, long term abx.

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Any suggestions on LLMD? The local ones (we live in the Chicago area) are not highly recommended. Lyme and co infections are tricky so we are looking for a good one. Are mycoplasma blood tests conclusive? Can a lyme literate doc also test and treat mycoplasma? I appreciate all of your suggestions. It's been the hardest thing dealing with all this.

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I recommend seeing a LLMD - they are trained to look for weird infections that other docs may not think to look for.

 

Thanks to our LLMD, my DD14 was recently dx with an active Brucella infection. All of her mainstream docs are dumbfounded that the LLMD thought to test for this.

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Dr. L. had us test our dd for strep, lyme, and myco. Our daughter had only strep, and Dr. L.'s treatment has been effective. The doctor did comment to me at one visit how she hates lyme, and I got the impression that she either treats patients with lyme in consultation with an LLMD, or refers them on.

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Make sure the dr checking for lyme is not using standard Elisa/Western Blot through traditional labs like quest, lab corp. It is just not reliable! (imho) Better to order the Western blot Igm/Igg through a lab like Igenex who looks for more specific bands and allows more time.

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Dr. B is more interested in lyme than he used to be and works with an LLMD on the more difficult cases. Dr. T will test but has acknowledged that he doesn't know much about how to treat lyme.

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Dr T the pediatric neurologist in New Jersey looks at many triggers for pans. I did a few phone consults with him. He is so great.

He ordered about 20 blood test for my dd. This is how we found bartonella. Her lymes was negative through labcorp. But later she tested positive for lymes through igenex.

Dr.T does not really know how to treat lymes. But gave me some names. I did not use his recommendations.

Edited by mary wag

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Yes. But it need not be an LLMD. A family doctor, DO, Chiropractor could run Igenex. You can print the order form off their website. I suggest just running the Western Blot Igm/igg for $200 to see what shows up. Many times, tick-borne co-infections are also involved, but that is something you could look into later if needed.

Edited by philamom

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You can find suggestions for LLMDs by going to www.lymenet.org. On the left, click on "flash discussion" then go to the link "seeking a doctor" and you can ask for recommendations in your area or based on how far you're able to travel. Many LLMDs will understand neuro-lyme and PANS and co-infections such as mycoplasma. Turning to an LLMD made all the difference for my son. But we're in CT, so we had some good options.

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Thanks everyone for their suggestions. We saw Dr K and he's 90% sure my DS has Pandas. We have been dealing only with motor and vocal tics for 1 year now. We ran bloodwork for strep and it all game back normal. We we're put on 14 day trial of Augmentin 600 ES and saw some mild improvement. He's not giving us any more antibiotics for now but wants to wait and see until my DS is old enough to try IVIG (he says that there are more results with IVIG once the child reaches 6 ). So now we are doing nothing and I'm not comfortable leaving my son go untreated. His tics are high frequency but not high severity. They drive me crazy.

 

I want to have more bloodwork done on him like test for Myco, Lyme, cocksaxie virus and whatever else might be needed to rule out other infections. Dr K is a big believer in strep induced Pandas and not Pans in general.

 

I don't know where to go from here. Please help. My heart breaks for my DS.

 

Thanks

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