Is PANS really LYME?

[socalmom]

I was speaking to a mother of a PANS/LYME child like my son and she seems to think PANS is LYME. I don't know what to make of this.

 

when these kids get into remission does the PANS go away? I don't know because i am not there, but spoke to a mom who said her child hasn't had a PANS flare for 4 yrs since doing lyme treatment!

 

She also said that lyme is an epidemic and many parents are accepting the 1 band is negative and even 2 or 3 and being told their child does not have lyme, only causing more confusion.

 

I found lyme quite quickly after PANS so i haven't really had a chance to become as informed as i would like.

 

I am registered at the conference at UCI so maybe this will help.

 

Thoughts anyone?

[KaraM]

I didn't vote for either, because I don't think the options capture my opinion. The way I look at it is Lyme is one of the many infections that results in PANS. So if the Lyme is successfully treated, the PANS symptoms should go away.

[Suzan]

Hi, my perception is really that they are both correct. I believe you can have PANS without lyme but that Lyme can cause PANS.

 

We are having a strep issue this year after treating our lyme and the pandas symptoms are flairing. Is it because there is still lyme in her body? I don't know. Is lyme the only underlying cause of pans? I don't really know that either but I suspect that it's not.

 

Just my thoughts on it. I had hoped that curing the lyme would cure our pandas but now I am thinking there are other things at play....

 

Or maybe the lyme created the PANS but it can exist on it's own until the body is totally healed?

[momcap]

I agree with the previous posters. I think lyme can cause PANS, but I highly doubt it could be the ONLY cause. I look at it as 1 factor in the snowball that hit my son's immune system. I like the analogy (LLM's, I think?) of peeling back the layers of an onion - PANS, lyme, mycoplasma, other co-infections, pyroluria, methylation issues, mold, ??? I believe that there have to be many factors that snowballed together to create this nightmare. I don't think it's exactly the same for everyone, but there would be similarities, hence the high number of us PANDAS folks who have discovered lyme. That must be 1 common factor, but certainly not the only factor, and not a required factor. There are lots of other infections that can cause similar problems. Just my 2 cents...

[PhillyPA]

Sorry. Changes my mind about posting.

Edited September 21, 2012 by PhillyPA

[P_Mom]

Philly...but didn't he also test positive for strep? Anyway....my vote is no.

[P_Mom]

. sorry..double post

Edited September 20, 2012 by P.Mom

[PhillyPA]

Again. Sorry.

Edited September 21, 2012 by PhillyPA

[SSS]

Well, I don't think it's the same thing, if that is what you mean.

I have Lyme and do not have PANS.

 

PANS to me is a set of neuro symptoms and behaviors-from infections, but the immune system or infections gone haywire and attacking the brain

causing the OCD, tics, verbal onslaughts, inability for the child to control themselves, separation anxiety, lack of maturity for their age.

I can tell you after the hel! here this morning,

I am once again struck that these children are some of the most difficult to raise.

We did not have 'sudden onset' or 'overnight regression'

with my daughter.

That to me points to gestational, or infected as an infant.

We do have a story of dd7 having a nymph tick on her arm

between 3-6 months old- (we were in a new construction house with field mice coming in the garage)

I thought it was a new mole that popped up, saw it raised,

pulled it down hard, had a blood trail.

I freaked and threw it, and had

NO clue.

*sigh*

And dealing with the PANS part, trying to modulate the immune system with steroids and 2 high dose IVIG's, did not work, either.

It's rough.

[JuliaFaith]

My son is in the middle of PANS exacurbation and his dr. Muscle tested him and seemed surprised that lyme tested neg. So, while lyme was part of healing, it it is hopefully deactivated and possible one of many things that caused the PANS not the only thing. At one time I was hopeful that getting rid of lyme would get rid of PANS but dr. Said son will probably always have PANS. Stem cell research is very active right now for auto-immune. We just keep hoping!

[socalmom]

Thank you ladies for the heartbreaking and honest replies.

 

I guess I got excited thinking treating my sons lyme would erase his PANS. wishful thinking i know.

 

He was tested by Dr T and is not strep induced PANS even though he did rapid test and was positive for strep at time of PANS flare or as i like to call it :all ###### breaking loose.

 

PhillyPA my heart goes out to you. it's such a difficult place to be with our kids having a disorder that alot of Dr's refuse to even believe in.

 

 

I hold out hope for this evil disorder to one day stop, but will it??? Will my son always have motor tics and wet himself as well as other issues?? I did IVIG for my son, it knocked out the ocd, but now with a new flare it's back, in a different way.

 

Clearly it's many infections of the "right" kind living in some sort of symbiotic way.

 

S&S you make a good point, why don't adults get PANS? I have lyme too.

[tpotter]

My opinion is that it is never just one thing that causes this severe of symptoms. For instance, DS has the OCD and tics, anxiety, depression, etc. PLUS he gets the rages. OK. we now know there was strep and MycoP he was exposed to the latter through me.) Later we find out there is also lyme and co-infections. But, he never tested positive...just had the clinical symptoms, including the bartonella rash.

[Christianmom]

My son is in the middle of PANS exacurbation and his dr. Muscle tested him and seemed surprised that lyme tested neg. So, while lyme was part of healing, it it is hopefully deactivated and possible one of many things that caused the PANS not the only thing. At one time I was hopeful that getting rid of lyme would get rid of PANS but dr. Said son will probably always have PANS.

With my son, since his symptoms are ONLY severe OCD, it seems that for whatever reason when he gets an infection (parasites, lyme, strep, EBV, yeast) his blood brain barrier opens and he gets inflammation in his basal ganglia and therefore gets severe OCD. So we are continuing to fight all infection until he is completely better. But what does that mean for his future? Will he continue to get OCD with any major infection? Is OCD his body's way of telling him he is sick? (He is asymptomatic for strep, has no "typical" lyme, parasite, yeast, or EBV symptoms and has no immune deficiencies.)

 

It is scary to think about, but it may very well be his future. Hard to explain to other people, but while some get headaches, runny noses, etc. when sick, my son gets OCD. In terms of physical symptoms, my son would be the "never been sick a day in his life" type, though he is and has been very, very sick.

[JuliaFaith]

PANDASnetwork.org is a great resource for your questions. It seems some children's immune systems do improve as they get older and, in our instance, it was starting to happen after all infections, viruses etc. had been addressed (until latest exacurbation anyway!).

 

Keep looking for pieces of the puzzle to get your child well again. If still not well, then keep looking, you will see continued healing if you find those pieces and treat.

 

Wish you well.

[ShaesMom]

I think this is a really great question and one that may be debated for along time.

 

We are a family of four with Lyme and only one dx'd with PANS. PANS child is by far the sickest if you exclude my cancer dx. She has been dx'd with CVID, PANS, Lyme & Co & Eosinophilic Esogphagitis. Plus she has some yet clearly undefined problem with her right kidney that Dr's monitor yearly. She has had three periods where her sx's/illness was clearly more PANS and treatment of underlying infection (2 Pseudomonas & 1 Strep related) "cured" sx's. Currently, I believe her PANS is in remission. However, like ChristianMoms child, whenever she is ill her sx tend to be PANS like. No matter what is going on in her body, she always has leg pain, headaches, and mood issues that border on raging. BUT the mood issues are short lived, can generally be linked back to a trigger within four hours, and she is usually in more "control"-meaning she is able to say, I can't stop myself, leave me alone so I can calm down. So PANS like but definitely different.

 

DS12 had ASO titers of 1100 and Dnase in the 400's when dx'd with lyme but no PANS sx. He actually had more typical EE sx. A year after starting tx his ASO is still in the 400's I believe but he has never had raging or PANS sx.

 

DH has elevated Dnase but normal ASO titers. I have both normal Dnase & ASO but I recently failed a Pneumo Vax challenage and have low IgG totals, and Subclass 1 & 3; so I am headed towards a dx of CVID myself.

 

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