Hyper-Immune and Immune Deficient

[MomWithOCDSon]

I've always been a little confused about this, and I'm trying to wrap my brain around a basic concept.

 

It seems, from the postings and reading here, that some of our PANDAS behavior kids are hyper-immune (rarely classically ill, asymptomatic for strep -- negative cultures but high titer counts, significant allergies), and some of our PANDAS behavior kids either appear to be, or are confirmed by testing to be, immune deficient (frequently classically "sick," "catching" everything they come in contact with).

 

So, is it appropriate for the treatment protocols to be the same for each classification? Is it a matter of "modulating" the immune system, rather than either specifically calming it or boosting it? Or is it that the hyper-immune kid should or does respond better to one treatment avenue, while the immune deficient kid responds better to another?

 

Again, I am science deficient, so please excuse my ignorance if this is obvious to most of you but remains a mystery to me!

[KeithandElizabeth]

In terms of IVIG, the treatment can be both modulating for auto-immune illnesses as well as enhancing for those with immune deficiencies:

 

Here is a good description of how IVIG can help both conditions:

 

http://www.suite101.com/blog/daisyelaine/ivig_therapy

 

Elizabeth

[peglem]

I've always been a little confused about this, and I'm trying to wrap my brain around a basic concept.

 

It seems, from the postings and reading here, that some of our PANDAS behavior kids are hyper-immune (rarely classically ill, asymptomatic for strep -- negative cultures but high titer counts, significant allergies), and some of our PANDAS behavior kids either appear to be, or are confirmed by testing to be, immune deficient (frequently classically "sick," "catching" everything they come in contact with).

 

So, is it appropriate for the treatment protocols to be the same for each classification? Is it a matter of "modulating" the immune system, rather than either specifically calming it or boosting it? Or is it that the hyper-immune kid should or does respond better to one treatment avenue, while the immune deficient kid responds better to another?

 

Again, I am science deficient, so please excuse my ignorance if this is obvious to most of you but remains a mystery to me!

I wonder about the same thing. My child used to be sick almost all the time when she was younger. After about age 9, she stopped getting typical symptoms- no more fevers, runny nose once in awhile, But that's when her PANDAS symptoms seemed to amp and stay amped. She was more episodic before then. Very low ASO, AntiDnase very low. She is immune deficient, not just in IgG, but also IgA and IgE. And I've always wondered if that should be treated the same as the kids who get high titers. But also, I wonder why, if my child is so bad at mounting an immune response, why is she so good at making auto-antibodies? Makes my head hurt trying to figure it out!

 

Edited to add: I wonder if this is why our kids seem to respond differently to treatment as well.

Edited April 17, 2010 by peglem

[marilina]

I wonder about the same thing. My child used to be sick almost all the time when she was younger. After about age 9, she stopped getting typical symptoms- no more fevers, runny nose once in awhile, But that's when her PANDAS symptoms seemed to amp and stay amped. She was more episodic before then. Very low ASO, AntiDnase very low. She is immune deficient

exactly!

my English is what it is

I am one of the newcomers on the forum,but I'm halted on the same question.

My daughter is a copy of pedlem, except that after the 9 years of age, also at that age she experienced PANDAS (never diagnosed with) , her immune system has become hyper: so hyper as her pediatrician sayd that an unbalanced ratio between B and T cells he has seen only in AIDS patients(but they are immunodeficient!) ..... no one has done investigations.

because his system is hyper, in addition to being re-educated by IVIG, in my opinion should be stripped of the high antibodies with plasmapheresis.

but I'm just a mom. this is what I "feel". I swore to myself not to do anything against what I feel, after agreeing wing vaccination at 10 months (she never talked after DTP)

now I find myself again at the mercy of the decisions of others without being able to say nor do anything, because something must be done. but what? what first and what next?

Edited April 17, 2010 by marilina

[MomWithOCDSon]

In terms of IVIG, the treatment can be both modulating for auto-immune illnesses as well as enhancing for those with immune deficiencies:

 

Here is a good description of how IVIG can help both conditions:

 

http://www.suite101.com/blog/daisyelaine/ivig_therapy

 

Elizabeth

Thanks for that, Elizabeth. That's the easiest-to-understand description of IVIG I've seen yet.

 

So, that would seem to suggest that IVIG can work for both ends of the spectrum: hyper and deficient. I do still wonder, though, if it's more successful for one group than the other, generally. At the least, the article seems to suggest that you're more likely to get your insurance company to pay for it if the treatment is "on label" rather than "off," meaning there's a documented immune deficiency.

 

And what about the whole abx thing, then? Why does it appear that the abx works for hyper kids who, even though they don't appear to have strep at present, and their ASO is high, they improve and the ASO count comes down?

[KeithandElizabeth]

Well, I believe, that several of the antibiotics can play a modulating role on top of their role in eradicating infections. I have definitely heard this about Clavulanate in Augmentin as well as zithromycin in general.

 

I am wondering out loud if the super hyper-immune kids, who show few illnesses (like my son) have just become more immune-compromised over the years and their immune systems are so hurt that they are not working properly.

 

Dr. Kovacevic told us during our consultation that the low IGG's (we had IGG levels at the very bottom, so they were not actually "low) were, in his mind, a result of the chronic infections and not the cause of the infections. This was when he was saying that we needed to do one high dose IVIG to help the auto-immune component versus the monthly small dose IVIG's. Now this may not be the case for everyone and some of these children may have been born with immune deficiencies.

 

I am still trying to wrap my head around the whole thing as well.

[thereishope]

Okay. I am so not the science type so I really hope I don't come off as sounding stupid.

 

Thinking out loud...

 

If your immune system is hyper, it really kicked in when your child had strep. Those numerous antibodies from a hyper immune system really do a number on the child. When your child went on antibiotics it slowed down the bacteria and, in turn, the immune system (which was already going crazy) killed the strep. So, now the antibodies did their job and they can start to lower. That's when you see improvement in PANDAS symptoms.

 

Those with a weak immune system or immune deficient....their body isn't used to really mounting an good attack. They get strep, they go on antibiotics. Again, the antibiotics slow down the reproducton of bacteria but that immune system STILL isn't strong enough to kill off the strep entirely. So the strep lingers and the antibodies stay to continue to try to kill it and they don't get a chance to begin to lower. So, since those antibodies remain in production, the PANDAS symptoms remain.

Edited April 17, 2010 by Vickie

[MomWithOCDSon]

Okay. I am so not the science type so I really hope I don't come off as sounding stupid.

 

Thinking out loud...

 

If your immune system is hyper, it really kicked in when your child had strep. Those numerous antibodies from a hyper immune system really do a number on the child. When your child went on antibiotics it slowed down the bacteria and, in turn, the immune system (which was already going crazy) killed the strep. So, now the antibodies did their job and they can start to lower. That's when you see improvement in PANDAS symptoms.

 

Those with a weak immune system or immune deficient....their body isn't used to really mounting an good attack. They get strep, they go on antibiotics. Again, the antibiotics slow down the reproducton of bacteria but that immune system STILL isn't strong enough to kill off the strep entirely. So the strep lingers and the antibodies stay to continue to try to kill it and they don't get a chance to begin to lower. So, since those antibodies remain in production, the PANDAS symptoms remain.

That all makes sense, Vickie.

 

I guess I'm still a little confused about treatment protocols in light of that information, though. If, as Elizabeth's reference has pointed out, certain treatments are truly "immune modulating," then I could see them as being helpful in both cases.

 

But what about all the "immune boosting" stuff, like various supplements? If a child is already hyper-immune, are you adding fuel to the fire by continuing to boost that system? Or is it that the hyper-immunity might be self-limited (to only certain allergens? to only strep or myco p?), so that in "boosting" the other parts of the system, some modulation can take place?

 

More thinking out loud: if a kid is immune deficient so they have trouble fighting off infection, then their auto-antibodies stay in production because there's always that "alarm call" that there's something to be fought. So you give them abx to finally get at that infection, but because they're atypically suseptible, maybe you keep them on prophylactic abx so that they don't continually catch something that will cause the auto-antibodies to mount again. Okay, I follow.

 

But here's a hyper-immune kid: you don't even know he's caught anything, including strep, because he never has the classic symptoms of it, and possibly never comes up with a positive culture, either. But he's got it, and his auto-antibodies load up and mount an attack. Only, they're mounting even when the kid isn't classically sick; there's no fever, no sore throat, no stomach ache, etc. They're in overdrive of their own accord? Why do abx work for this kid (at least some of the time)? Is it this "intracellular strep" that they finally reach and so that healing backs the antibodies down? And if so, how do we get at demonstrating the presence of this "intracellular strep" for the difficult, skeptical doctors?

 

I keep hearing that the ASO tests aren't good for use on diagnostic terms because they are only capable of reflecting a "recent" strep infection, and because not all kids who have PANDAS have elevated titers. But is it possible they ARE a good indicator for the hyper-immune set, i.e., indicative of some presence of this "intracellular" form of the illness? It makes sense that immune deficient kids might not display elevated titers under any circumstances because that's part of why they have PANDAS in the first place, their auto-antibodies come to work, but the workforce just isn't sufficient for getting the job done. But the hyper-immune . . . it seems that their predicament is a little tougher to document and explain, especially in terms of qualifying medically for some of the "bigger" treatment procedures, like IVIG or pex.

[fuelforall]

Those with a weak immune system or immune deficient....their body isn't used to really mounting an good attack. They get strep, they go on antibiotics. Again, the antibiotics slow down the reproducton of bacteria but that immune system STILL isn't strong enough to kill off the strep entirely. So the strep lingers and the antibodies stay to continue to try to kill it and they don't get a chance to begin to lower. So, since those antibodies remain in production, the PANDAS symptoms remain.

That all makes sense, Vickie.

 

 

Have to throw this into the mix. My son had immune deficiencies but never gets strep, so to speak. Gets moderately high strep titers, nothing major. Immune system highly unresponsive. Never a fevver. When something does occur, his symptoms vanish.

Somehow he doesn't fit in all this.

 

M

[Chemar]

my son has Crohn's Disease , genetic Tourette Syndrome/ OCD stuff, likely PITAND as well

 

before he had the Crohn's dx, he was on all kinds of immune "boosting" stuff like pycnogenol, grape seed extract etc as that was part of our natural protocol for his TS

 

after they found he had Crohn's, which, like PANDAS, is auto-immune, we were advised to avoid the big gun immune boosters and aim for immuno-modulation instead . The conventional treatment protocol for Crohn's is immune suppression, but we did not feel comfortable with that after we carefully looked at the potential side effects, as well as the possible implications for his overall neurological health, which was finally in a more stable place, after extreme waxing and waning of his TS/OCD for a couple of years after onset.

 

I had to learn to distinguish between a hyper immune system and auto-immunity. It seems to me that in the former, the immune system is over reactive to any little "intruder", often the case with allergic people...... but in the latter, it sees the person's own cells as the enemy! and mounts an attack on itself. ...in addition to hyper reacting to all real intruders!

 

I think in autoimmune individuals, the situation needs very careful balance, hence the immune modulation recommendation, and that working to also correct the root cause of those cells sending out the wrong "message" to the immune system, should be part of the healing process. Stopping inflammation seems key here too I think.

 

our acupuncture therapist uses a combination of specially placed needles, along with a biofeedback therapy to aid in the modulation. I was skeptical at first, but I have seen firsthand how positively my son responds to the treatment when he has had Crohn's flares.

Edited April 18, 2010 by Chemar

[thereishope]

Yep. there's always going to be subcatagories to subcatagories and exceptions. My son doesn't get the symptoms, but will test positive so that puts a wrentch into this theory....

But here's a hyper-immune kid: you don't even know he's caught anything, including strep, because he never has the classic symptoms of it, and possibly never comes up with a positive culture, either.

Edited April 18, 2010 by Vickie

[kimballot]

My understanding (limited) is that the main problem with PANDAS/PITAND is the inflammation piece. The inflammation allows a breach in the blood-brain barrier, which allows antibodies to cross and interact with the brain (normally, the blood vessels in the brain only allow select nutrients to cross the BBB to get to the cells- far more selective than in the rest of the body). This can happen in hyer or hypo immune kids.

 

The other piece I am getting is the idea of molecular mimicry, which says that infectious molecules can change their surface to look like parts of our body, in hopes that the body will not attack them. In the case of PANDAS, the strep has changed itself to look like the basal ganglia. The body then makes antibodies to the new strep - and those antibodies attack anything that looks like the new strep - including the basal ganglia.

 

IVIG adds new antibodies to the blood - thereby reducing the concentration of old antibodies. For some reason, IVIG calms down inflammation (I really do not know why), which closes the blood brain barrier. The new antibodies help those with hypoimmunities to fight off any nasty things in the body, and helps those with hyperimmunities to fight things off so they don't have to continue to produce antibodies (I think that is how it works).

 

Prednisone also helps to calm down the inflammation to close the Blood Brain Barrier, but does not introduce the new antibodies like IVIG does, and its effects are often temporary.

 

Also - add to this mix- some kids are having these reactions as a result of something OTHER than Group A strep (eg: mycolasma, lyme)... so their strep tests are going to be negative, with low titers, even if they have good immune systems.

 

Not sure how much of that is accurate, but that is my thinking at this point in my PANDAS journey.

Edited April 18, 2010 by kimballot

[sf_mom]

I'll add a little...... Our children could easily have co-infections. The strep pyogenes has the ability to destroy red and white blood cells due to the toxins it throws off making IT much more difficult to fight off future infections of any type.

 

Group A streptococci typically have a capsule composed of hyaluronic acid and are beta-hemolytic, which is true for Streptococcus pyogenes.[1] Beta-hemolytic streptococci produce a toxin that forms a clear zone of hemolysis on blood agar, demonstrating its ability to destroy red blood cells. This hemolysis is attributed to toxins formed by Group A streptococci called streptolysins. Streptolysins can destroy not only red blood cells, but also the white blood cells responsible for fighting off bacteria and disease, as well as other body cells.[2]

 

http://pyogenesgonewild.com/

 

Not all strep infections will result in rise titers due to serotype.

 

http://www.jstor.org/pss/30105590

[marilina]

The other piece I am getting is the idea of molecular mimicry, which says that infectious molecules can change their surface to look like parts of our body, in hopes that the body will not attack them. In the case of PANDAS, the strep has changed itself to look like the basal ganglia. The body then makes antibodies to the new strep - and those antibodies attack anything that looks like the new strep - including the basal ganglia.

 

this 3d is everyday more interesting

thanks kimballot

I've never read this, have you any link to post?

[marilina]

I've found this:

 

Previous investigation into post-streptococcal autoimmune disorders has focused on M proteins, the protein sequences expressed on streptococcal cell walls. The M protein amino acid sequences are highly variable, and only certain M protein serotypes have been associated with post-streptococcal autoimmunity. It is proposed that M protein amino acid sequences share homology with host basal ganglia antigens, and that autoimmune induction involves a process of molecular mimicry.

http://bjp.rcpsych.org/cgi/content/full/181/3/188