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If 1st dx'd PANDAS then LD...did PANDAS ever reall play a role?


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We see an LLMD (not #1 dr. choice but I'm deperate) in 2 days and chomping at the bit. Only have 1 opening for 2 of my children right now b/c got a cancellation. Was picking DD9 at as she hasn't attended school in 6 days. Metldowns slowing down but has foot pain(varies tingling to sharp pains), thumb joint pain, electrical pulses (best description???) from forearms to hands, feels like eyes are going to pop out of head--these are in addition in the past 2 wks to PANDAS symptoms she's had since May. But DS6 is raging BAD these days. Not all day but when it happens, look out. Epsom salt baths are our saving grace...so maybe he belongs at the appt Wed. Huh decisions, decisions...at least moving forard.

 

Anyway, IF turns out to be Lyme and/co-infections, was strep just a part of LD and PANDAS was mis-dx'd or does PANDAS go hand in hand w/ LD? I had a popular PANDAS neuro telling me he only saw 1 case of PANDAS and LD a while back. I know better from forum! Our immunologist overlooked LD b/f IVIg b/c Igenex "appreared" normal but so many of you said see LLMD b/c not cut and dry. Just feel like there is still such missing info between what docs know and we are left to pick up pieces so I thank you all for your advice.

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I know our LLMD views my children to have a hyper-immune response that is not necessarily Lyme based. He does not make a distinction between PANDAS/Lyme and is cautious of getting wrapped up in the diagnoses. He set out to discover what was impacting our children's immune response inclusive of bacteria, parasites, mold, viruses, allergens, toxins, etc. Once the result came back, he started solving each problem. For our older son we know strep, lyme, intestinal parasite, milk/cassein allergies and possible co-infections of babesia and bartonella. The intestinal parasite is gone, the milk/casseins have been eliminated from diet while we work on repairing gut, plus antibiotics to treat the lyme, etc.

 

By eliminating the things that are creating the hyper-immune response the individual slowly becomes better. I hope that helps to put things a little into perspective regarding Lyme/PANDAS. We are no longer fearful of strep in our household..... its only one piece to our puzzle and our older son is no longer responsive to strep.

Edited by SF Mom
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in our situation, i don't believe pandas was an incorrect diagnosis so much as an incomplete one. ds had sudden onset, high titers, positive strep culture and initial 100% remission with keflex. fairly clear cut pandaSTREP.

however, with relapse when off abx and downward spiral with some virus or something, we investigated further.

 

thru a type of ART testing, integrative MD diagnosed multiple infections, including lyme, cytomegalovirus, toxoplasma gondii -- all with known neuropsych symptoms. i now consider him pitand - multiple causes. i don't believe he has neuropsych lyme -- i think his symtpoms are related to strep -- perhaps lyme and the others are the 'stealth' bacteria wrecking havoc but strep is also problematic and seems to cause the symptoms we see.

 

i am so for dropping the "S" and working with a pitand model, then investigating all the possible causes and treating.

and, unfortunately, there are many.

 

okay -- so i just read Wendy's response which is so much more eloquent than mine -- i do believe we are on a similar path of beliefs wth: By eliminating the things that are creating the hyper-immune response the individual slowly becomes better

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I too am all for dropping the 'S' from PANDAS or going with the PITANDS diagnoses but I also continue to question the 'A' which represents auto-immunity. Again, those diagnoses lean more towards auto-immunity verses chronic infection. In our situation it is chronic infection and when those are gone our Dr. believe the hyper-immune response stops i.e. auto-immunity.

 

-Wendy

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I too am all for dropping the 'S' from PANDAS or going with the PITANDS diagnoses but I also continue to question the 'A' which represents auto-immunity. Again, those diagnoses lean more towards auto-immunity verses chronic infection. In our situation it is chronic infection and when those are gone our Dr. believe the hyper-immune response stops i.e. auto-immunity.

 

-Wendy

 

 

again - much more eloquent!! yes, i agree.

 

we need a vowel sound -- PITNeD - ?:P

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We see an LLMD (not #1 dr. choice but I'm deperate) in 2 days and chomping at the bit. Only have 1 opening for 2 of my children right now b/c got a cancellation. Was picking DD9 at as she hasn't attended school in 6 days. Metldowns slowing down but has foot pain(varies tingling to sharp pains), thumb joint pain, electrical pulses (best description???) from forearms to hands, feels like eyes are going to pop out of head--these are in addition in the past 2 wks to PANDAS symptoms she's had since May. But DS6 is raging BAD these days. Not all day but when it happens, look out. Epsom salt baths are our saving grace...so maybe he belongs at the appt Wed. Huh decisions, decisions...at least moving forard.

 

Anyway, IF turns out to be Lyme and/co-infections, was strep just a part of LD and PANDAS was mis-dx'd or does PANDAS go hand in hand w/ LD? I had a popular PANDAS neuro telling me he only saw 1 case of PANDAS and LD a while back. I know better from forum! Our immunologist overlooked LD b/f IVIg b/c Igenex "appreared" normal but so many of you said see LLMD b/c not cut and dry. Just feel like there is still such missing info between what docs know and we are left to pick up pieces so I thank you all for your advice.

Tough call on who to pick first. I've had those "electrical impulses" or tingling sensations. I do believe they are Lyme related. I don't know if Lyme causes PANDAS, but I do know people with Lyme catch strep more often and have a hard time kicking it (hey, I just had my tonsils out because of this!). So while not all Lyme's patients will develop PANDAS, I think they will be at greater risk because their immune system can't handle much, that's what Lyme does to you.

In the end, it doesn't matter what you call it, as long as you find a treatment that works! I am putting all my money on erradicating Lyme and co-infections first before I go any further down the PANDAS path. Our LLMD is familiar with PANDAS so he tries to give them abxs that will address both.

I think even neurologists are having a second take on this whole thing... I heard our neurologist is now testing kids through Igenex if there is suspicion of Lyme. A year ago when we started seeing her she totally dismissed the whole theory, and unfortunately I did not know any better then.

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Everyone's already gotten on this question but I thought I'd chime in..

 

Lyme came about six years after P.A.N.D.A.S. here. I think they can definitely coexist. Well, obviously they can, haha. :)

I think P.A.N.D.A.S. kids are just more susceptible to not being able to fend off Lyme effectively. Most P.A.N.D.A.S. kids are immunocompromised & I know most of us catch whatever is going around... I'm no tick expert, but I think it's the same kind of reasoning applied to ticks. Not every single person who gets bitten by a Borrelia carrying tick ends up with late-stage, disseminated, neuropsych Lyme, but I know that at least in my case, I'm just not making enough antibodies to fight the #### thing off. I don't know if being immunocompromised is a criteria or just a common symptom of P.A.N.D.A.S., but I think that's why we see the Lyme connection so much. Especially with particularly bad Lyme. I think P.A.N.D.A.S. could definitely play a role in a patient who previously didn't have Lyme, but now does.

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I think this way also as I have never believed that focusing on label diagnoses helps anyone target the cause. It never helps answer the question why. One of the advanced members on this forum posted the ILADS 2010 Conference Takeaways and here is a quote:

 

• "Dr. Richard Horowitz proposed that Chronic Lyme is really MCIDS - Multiple Chronic Infectious Disease Syndrome"

 

I think people will look back on this statement in 5 or 10 yrs and say that he was ahead of his time. It is likely multiple infections and that is why the co-infections test is important and hopefully they will add more and more tests to the list over time. I also find it interesting that the Dr Horowitz mentions LDN as helpful in lowering cytokines which is a big help with symptom relief. LDN was used for MS for years and then about 5 yrs ago Dr McCandless introduced it for autism. We started it then and saw good results. It modulates the immune system and we actually saw it bring out viruses. Amazing how all of the different integrative diseases are tied together deep down. Seems like everything is one or two puzzle pieces apart. John L

 

 

I know our LLMD views my children to have a hyper-immune response that is not necessarily Lyme based. He does not make a distinction between PANDAS/Lyme and is cautious of getting wrapped up in the diagnoses. He set out to discover what was impacting our children's immune response inclusive of bacteria, parasites, mold, viruses, allergens, toxins, etc. Once the result came back, he started solving each problem. For our older son we know strep, lyme, intestinal parasite, milk/cassein allergies and possible co-infections of babesia and bartonella. The intestinal parasite is gone, the milk/casseins have been eliminated from diet while we work on repairing gut, plus antibiotics to treat the lyme, etc.

 

By eliminating the things that are creating the hyper-immune response the individual slowly becomes better. I hope that helps to put things a little into perspective regarding Lyme/PANDAS. We are no longer fearful of strep in our household..... its only one piece to our puzzle and our older son is no longer responsive to strep.

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THANK YOU ALL! Makes so much sense. So much so, feel silly I couldn't connect the dots myself. I think as the mom, I want to identify and compartmentalize symptoms so that I can attack and conquer them but I feel like the countless hours playing researcher and nurse should account for so much more progress. Thanks for clearing things up so I can be recharged for whatever tomorrow brings. Best wishes.

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Can I ask...when you say "no longer responsive to strep" do you mean when he is only exposed to strep or he has had a strep infection with no increase in symptoms?

 

We are no longer fearful of strep in our household..... its only one piece to our puzzle and our older son is no longer responsive to strep.

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Vicki,

 

I haven't tested my son for strep since being on antibiotics last year. His ASO was less then 90 and Anti-DNase-B was 60 in June. Last winter his symptoms always flaired when there was confirmed strep in his class. This year he has had confirmed cases in class with no increase in symptoms. So, not fearful of him being exposed to strep or harboring strep at this point.

 

The true test will be when he eventually off antibiotics and we do confirm strep....... but I suspect he still has another year of treatment at this point.

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Wendy,

but your child is being treated for lyme, right? you have stated that he has had some flairs of symptoms since, which you call herxing...how do you really know it is from that and not from being exposed to strep or even 'having it', (albeit showing no symptoms of it, which can apparently be possible in pandas).....??

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Faith,

 

His symptom flair consist of chapped lips, joint pain, dilated pupils, mood liability that come in two week cycles and last a couple days. These are his only remaining symptoms at this time: no OCD, no TICs .... no complaints of sore throat or stomach aches. The confirmed cases of strep in his class did not coincide with these increases in symptoms.

 

But, maybe you are right it might PANDAS flairs due to strep exposure.... I don't think so though because the herx's are very timely and his titers are low although not tested since June.

 

Again, the true test will be when he is taken off antibiotics.

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Hope you all will have patience with the me being a newbie to this particular forum. :)

 

I'm wondering if anyone has thoughts on this study or if anyone could point me in the direction of the thread where it was discussed?

 

As I was scanning this thread, it seemed like a good place to ask this question!

 

http://www.ncbi.nlm.nih.gov/pubmed/15695691

 

Evidence of Borrelia autoimmunity-induced component of Lyme carditis and arthritis.

 

Department of Pathology, New Jersey Medical School, University of Medicine and Dentistry of New Jersey, 185 S. Orange Ave., Newark, NJ 07103, USA.

 

Abstract

We investigated the possibility that manifestations of Lyme disease in certain hosts, such as arthritis and carditis, may be autoimmunity mediated due to molecular mimicry between the bacterium Borrelia burgdorferi and self-components. We first compared amino acid sequences of Streptococcus pyogenes M protein, a known inducer of antibodies that are cross-reactive with myosin, and B. burgdorferi and found significant

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I'll admit, I have a very hard time reading these studies...God Bless Madeleine for being able to design and run them!!!

 

Is the bottom line in this which came first; chicken or egg debate that these scientists determined the predisposition for auto-immunity comes first, not that the auto-immunity is caused by these two manifestations of Lyme (joint & heart)?

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