Is PANS really LYME?

[momcap]

 

 

So everyone in our family clearly has issues with strep but only one has the severe sx associated with PANS.

 

Same here. We are all positive for lyme, all positive for strep off and on, including 1 strep tcarrier, but only 1 with PANS/PANDAS.

[RNmom]

PANS can have many underlying causes and on that list of "PANS Causes" is Lyme. My son had PANS / Lyme / Bartonella. We did not get the PANS symptoms under control until his Lyme and Bart was successfully treated. I wish everyone could see him now. He is vibrant, developing normally along with his peers, and enjoying his life for the first time in two years. When he was at his sickest point, he could not even come out of his room or communicate with us. His OCD was in the "catastrophic" range. We truly lost him to the illness for a while.

 

Now that the Lyme symptoms and Bart symptoms have been largely relieved we are able to discern new PANS flare ups from causes other than Lyme or Bart. For example: one night last June (2012) our son began to exhibit very mild OCD behaviors. (We now know them well and are able to pick up on them very quickly.) However, as it was June and he was not in school around strep and other triggers, and because he was not sick himself and no one in the family was sick (so I thought), I was terrified that perhaps the Lyme / Bartonella treatment had "failed." (Or worse, that he truly was mentally ill and we had been in denial all along.) I had a sleepless and very anxious night after which my older son came to me and said, "Mom can you look at my throat?" To my "relief" (for my PANS son) my older son's throat was bright red and his tonsils were swollen and covered with yellow blisters. We started my older son on Azithromycin that day and my PANS son's PANS symptoms disappeared in 24 hours. For us that experience was a small "proof" that our son does have PANS and it is separate and distinct from Lyme - but can be triggered by Lyme as well as any other insult to the immune system.

 

This small "proof" occurred back in June of this year. Just this week (September 2012) we had another "proof" of a different type of trigger for our son's PANS. I gave him a new Magnesium supplement. He had an allergic reaction (presumably to one of the additives) within an hour. It set off his PANS symptoms (OCD, agitation, clipped communication). I loaded him up with Advil. Gave him a Clonazapan to settle the anxiety. Told him "this was temporary" and that "it was not all coming back." He was terrified. By the following morning he was 75% better. By the next evening (presumably after the new supplement was out of his system) he was 200% better - back to his "new baseline" of happy, healthy, communicating well, and developing normally. It was another distinctly discernable PANS flare from an allergic reaction to a new med. and another small "proof" for our family.

 

My son has PANS plain and simple. When he had Lyme and Bartonella it was so difficult to treat and the treatment took so long that we could not "see" the PANS from the Lyme or Bart. For a very long time it was as if these different illnesses were "one and the same." It has only been since our son has had lengthy stretches of good health that we have been able to discern episodes of PANS due to other causes. Our son has classic PANS - he is a poster child for this illness when he has an episode. Now we understand better how to identify it early. When he had Lyme/Bartonella it looked as if the PANS would rule his life forever. But, when we finally got that treated we can now see that PANS can be managed.

 

I would humbly suggest that some of the most difficult to treat cases of PANS may have Lyme or a coinfection confounding the efforts to get PANS under control. I say that because Lyme and coinfections are so very difficult to identify and take a long time to treat successfully. Confounding the process is the fact that treatment for Lyme and coinfections necessarily trigger Herxheimer responses that stir up the immune system and make PANS symptoms worse. It is easy to get lost in the treatment process, to give up on Lyme treatment too early, to miss a coinfection, or to doubt the PANS component of the illness. In my experience, one of the biggest casualties of the Lyme / PANS combination is the validity of immune modulation therapy. Our son had IVIG and plasmapheresis and they both "helped" briefly. I do not think these treatments "failed," I do not think they are invalid treatments, I just think they were not able to address the Lyme and Bartonella. They key point here is that immune modulation can work for PANS but only IF all the underlying infections are out of the way. At least, this is what seems to be true in our son's situation. It's all about the timing of the treatment.

 

I realize that I have written a lot here. The question about PANS being Lyme or PANS being PANS is important. It begs the greater question about treatment approaches and their timing. I am very glad to see the forum growing in comprehension of this very complex set of diseases. It means we are making progress and there is hope with this illness.

Edited September 26, 2012 by RNmom

[tpotter]

 

 

Same here. We are all positive for lyme, all positive for strep off and on, including 1 strep tcarrier, but only 1 with PANS/PANDAS.

 

But, honestly, what is a "strep carrier?" To me that is nothing more than the fact that the person tests positive for strep, but they can't figure out where the strep is. The fact that they are contageous (people tend to get sick around them) means to me that strep is still strep, and that person may very well be having symptoms, but doesn't necesarily equate the 2 together.

[momcap]

 

But, honestly, what is a "strep carrier?" To me that is nothing more than the fact that the person tests positive for strep, but they can't figure out where the strep is. The fact that they are contageous (people tend to get sick around them) means to me that strep is still strep, and that person may very well be having symptoms, but doesn't necesarily equate the 2 together.

 

Yes, I TOTALLY agree! I've had several very lively discussions with my doc about my "carrier" son. Just because he doesn't have puss on his tonsils and a fever, and his strep doesn't clear with a regular course of antibiotics, doesn't mean we should just call him a carrier and give up!! Every single swab he's EVER had is positive, so we don't need to guess where the strep is. Clearly it's in the back of his throat, and likely elsewhere too. He had "migraines" and "allergies" which I believe was strep in his sinuses. They both cleared within 2 months of starting lyme treatment. My PANDAS son had major and continuous improvement when my "carrier" son was on abx along with him. Unfortunately, we were unable to continue abx with carrier DS, due to severe stomach pains. Ever since we took "carrier" DS off abx, PANDAS DS has been struggling. And at about 6 weeks off abx, carrier DS got that peculiar stink back on his breath. Ugh. At least the headaches haven't come back (yet). So frustrating! And my family doc doesn't believe a word I'm saying because it doesn't make sense medically. Okay, done ranting... for now...

[ShaesMom]

 

But, honestly, what is a "strep carrier?" To me that is nothing more than the fact that the person tests positive for strep, but they can't figure out where the strep is. The fact that they are contageous (people tend to get sick around them) means to me that strep is still strep, and that person may very well be having symptoms, but doesn't necesarily equate the 2 together.

 

Yes, I TOTALLY agree! I've had several very lively discussions with my doc about my "carrier" son. Just because he doesn't have puss on his tonsils and a fever, and his strep doesn't clear with a regular course of antibiotics, doesn't mean we should just call him a carrier and give up!! Every single swab he's EVER had is positive, so we don't need to guess where the strep is. Clearly it's in the back of his throat, and likely elsewhere too. He had "migraines" and "allergies" which I believe was strep in his sinuses. They both cleared within 2 months of starting lyme treatment. My PANDAS son had major and continuous improvement when my "carrier" son was on abx along with him. Unfortunately, we were unable to continue abx with carrier DS, due to severe stomach pains. Ever since we took "carrier" DS off abx, PANDAS DS has been struggling. And at about 6 weeks off abx, carrier DS got that peculiar stink back on his breath. Ugh. At least the headaches haven't come back (yet). So frustrating! And my family doc doesn't believe a word I'm saying because it doesn't make sense medically. Okay, done ranting... for now...

 

Have you considered meeting with an ENT and having carrier DS's tonsils removed?

[momcap]

 

 

Have you considered meeting with an ENT and having carrier DS's tonsils removed?

 

Good point. I never really thought about it, because he doesn't meet the criteria (carriers don't count as having active strep infections). But if I fought hard enough I could probably make it happen. I will be considering it for sure! TY!

[socalmom]

I went to the UCI -University of California Irvine PANDAS/PANS symposium and they now say it's a gene.

 

A gene linked to Parkinsons. studied 1,000 kids and this is what they came up with, although there were Dr's there that disagreed and didn't wan to even talk about Lyme.

 

 

I sat quietly and listened, there was only 1 LLMD in the crowd. They also said Parents need to push for AAP to recognize this disorder, *sigh* it's always on the parents.

[momcap]

I went to the UCI -University of California Irvine PANDAS/PANS symposium and they now say it's a gene.

 

A gene linked to Parkinsons. studied 1,000 kids and this is what they came up with, although there were Dr's there that disagreed and didn't wan to even talk about Lyme.

 

 

I sat quietly and listened, there was only 1 LLMD in the crowd. They also said Parents need to push for AAP to recognize this disorder, *sigh* it's always on the parents.

 

Well the gene thing makes some sense to me. That could explain why all 3 of my boys got lyme, but only 1 got PANDAS. Maybe lyme was their particular trigger, and DS9 probably has the "faulty" gene combo, therefore he gets PANDAS. ??? Just thinking out loud.