Opinion

[Lynn777]

DS had significant improvement on Amoxicillin (x3). Pandas doc thought it was quite definitely strep/infection related (mostly tics). He put us on Augmentin for future outbreaks/exacerbation's. Now DS isn't responding positively to Augmentin or Amoxicillin, so I'm going back to thinking this is just Tourettes plain & simple.

 

Pandas doc said in his opinion ALL Tourettes is Pandas, not sure I buy that.

 

Thoughts?

[LNN]

There is a growing collection of research to suggest that some TS cases are indeed infection-based. There are several other infection-based things beyond strep that can trigger tics. Lyme, Bartonella, mycoplasma, mold (tho that's not infection based). If you're so inclined, these things can be tested for with blood markers. But it depends on your gut. Some people are ok with adapting to life with tics and others feel driven to find a trigger and eradicate if possible. If you'd like a list of things you can test for, let me know.

 

I think it depends on what you've tested for already and what co-morbid symptoms you may have. IMHO, the more co-morbid stuff you have going on, the more likely it is that there's a microbe involved. But that's only my opinion.

[MomWithOCDSon]

Hi Lynn --

 

I'm not all that familiar with TS or tics, but I remember when we first stumbled upon PANDAS, after our DS having been diagnosed with OCD for more than 6 years, trying to wrap my brain around "PANDAS OCD" versus "regular OCD." Initially, it seemed as though the literature, the researchers and the doctors were drawing a line between the two, and that thinking was part of the reason our PANDAS diagnosis and treatment was put off for so long. I'm slowly letting go of the bitterness of that experience, but I have to admit that I still have a soft, touchy spot where this topic is concerned.

 

Given everything that's come out more recently . . . or been "rebirthed," as it were . . . about "regular OCD" and various treatments that work for it, including antibiotic therapy (d-cycloserine), I don't know how any doctor worth his/her salt can honestly sit there and say that this condition (as well as others such as autism, bi-polar and schizophrenia) is NOT linked to inflammation in the brain and glutamatergic dysfunction. And being as we know at least ONE of those components (inflammation) and possibly both of them are also part of the PANDAS/Pitands condition, I truly do think that there's no such thing as "regular OCD" or "regular TS" or any "regular" psychological condition. I think these conditions are an unfortunate marriage of: genetics and inflammation triggers, whether those triggers be environmental (mold) or medical (Lyme, strep, myco p, etc.).

 

So, yes, in my completely biased, non-medical, non-scientific, Momma Bear mind, I suspect that ALL OCD is PANDAS/Pitands and ALL TS is PANDAS/Pitands. And perhaps autism, bi-polar, schizophrenia, ADHD and ADD is PANDAS/Pitands, too, though I know much, much less about those conditions and have studied them considerably less, as well. I further suspect that, within a couple of generations from now, the medical community will laugh out loud at the ignorance of these times in this regard. Maybe our kids will lead the charge and be the brilliant researchers and treatment providers of Tomorrow!

[eljomom]

LLM---is there a blood test/marker for mold? Or do you have to hire someone to test your house?

 

 

There is a growing collection of research to suggest that some TS cases are indeed infection-based. There are several other infection-based things beyond strep that can trigger tics. Lyme, Bartonella, mycoplasma, mold (tho that's not infection based). If you're so inclined, these things can be tested for with blood markers. But it depends on your gut. Some people are ok with adapting to life with tics and others feel driven to find a trigger and eradicate if possible. If you'd like a list of things you can test for, let me know.

 

I think it depends on what you've tested for already and what co-morbid symptoms you may have. IMHO, the more co-morbid stuff you have going on, the more likely it is that there's a microbe involved. But that's only my opinion.

[smartyjones]

So, yes, in my completely biased, non-medical, non-scientific, Momma Bear mind, I suspect that ALL OCD is PANDAS/Pitands and ALL TS is PANDAS/Pitands. And perhaps autism, bi-polar, schizophrenia, ADHD and ADD is PANDAS/Pitands, too, though I know much, much less about those conditions and have studied them considerably less, as well. I further suspect that, within a couple of generations from now, the medical community will laugh out loud at the ignorance of these times in this regard. Maybe our kids will lead the charge and be the brilliant researchers and treatment providers of Tomorrow!

 

i heartily agree -- we all kind of consider ourselves experts. . . but i certainly think momwithOCDson ranks high above us in her learnedness.

unfortunate for us now b/c it will be ignorance in hindsight, like a leading OB dr long ago stating dr's didn't need to wash their hands even after autopsies to exam pregnant women b/c "dr's are gentlemen and gentlemen have clean hands"

[LNN]

There are blood markers for testing your genetic susceptibility to mold tolerance - the gene is HLA DR. Having certain variants of this gene make it difficult for your body to handle mold toxins. In the same way ragweed is in my backyard and doesn't bother DH but my eyes are itchy. You can have mold where you work or live and some people can handle the toxins and others can't. If you have a mold susceptibility and have a mold environment and also have other immune-challenging illnesses, such as Pandas, lyme, chronic viruses, etc., then your body can struggle to handle it all. Integrative doctors talk about bucket filling - you can handle a certain amount of illness, but add too much and it overflows. Certain genetic markers mean that person has a smaller bucket when it comes to certain toxic loads.

 

The other markers you can test for are inflammation markers that typically show up with chronic exposure to mold and/or lyme (and probably other things - but these are the illnesses that the gurus see most in their practices and that's the lens thru which they view things and therefore write about). The mold expert is Dr Shoemaker. Excerpts from his website:

The Biotoxin Pathway

Stage 1: Biotoxin Effects

 

It all starts when a person is exposed to a biotoxin. In most people, the biotoxin is 'tagged' and identified by the body's immune system and is broken down and removed from the blood by the liver. However, some individuals do not have the immune response genes (HLA-DR genes) that are required to eventually form an antibody to a given foreign antigen. In these cases the biotoxins are not 'tagged' and remain in the body indefinitely, free to circulate and wreak havoc.

 

Once present in the body, the biotoxins begin to set off a complex cascade of biochemical events. The biotoxin binds to surface receptors (Toll receptors and many more) in nearly every kind of cell in the body. This recognition and binding of the biotoxin causes a continual upregulation of multiple inflammatory pathways, including production of cytokines, split product of complement, and TGF Beta-1. Biotoxins also directly affect nerve cell function, which is one of the reasons that the symptoms and visual contrast sensitivity (VCS) test are so useful in diagnosis.

Stage 2: Cytokine Effects

 

Cytokines in turn bind to their receptors, causing release of MMP9 in blood. In the brain, cytokines bind to the leptin receptor, preventing its normal function in the hypothalamus. The blocked leptin receptor will no longer create the initiation of steps that lead to production of alpha melanocyte stimulating hormone (MSH). Elevated cytokines can produce many different symptoms including: headache, muscle ache, unstable temperature and difficulty concentrating. This problem is the disastrous effect of MSH deficiency. High levels of cytokines can also result in increased levels of important compounds such as I-1 and clotting factors as shown by a von Willebrand’s profile. Of importance in cardio vascular health, MMP-9 delivers inflammatory elements from the blood into sensitive tissues and can combine with PAI-1 to increase clot formation and arterial blockage.

Stage 3: Reduced VEGF

 

The elevated cytokine levels in the capillaries attract white blood cells, leading to restricted blood flow and lower oxygen levels in the tissues (we call this capillary hypoperfusion). Reduced VEGF leads to fatigue, muscle cramps and shortness of breath.

Stage 4: Immune System Effects

 

Patients with certain HLA genotypes (immunity related genes) may develop inappropriate immune responses which may include antibodies to: gliadin (gluten sensitivity), actin, anca (think ulcerative colitis), cardiolipins (affects blood clotting), and more. Most devastatingly of all, the complement system becomes chronically activated resulting in high levels of C4a.

Stage 5: Low MSH

 

Reduced MSH production results in yet another set of problems and symptoms. The production of melatonin is reduced which results in sleep problems. Endorphin production is suppressed which leads to chronic and sometimes unusual pain. Lack of MSH can cause malabsorption or 'leaky gut' which further weakens and deregulates the immune system. White blood cells eventually lose regulation of cytokine response so that opportunistic infections may occur or recovery from infections is slower.

Stage 6: Antibiotic Resistant Staph Bacteria

 

Reduced MSH also allows resistant staph (MARCoNS) to survive in biofilm on the mucous membranes. These bacteria further compound MSH deficiency and the problem by producing exotoxins A and B that cleave MSH, further decreasing the MSH levels. At this point, the downward spiral starts to perpetuate itself.

Stage 6: Pituitary Hormone Effects

 

Reduced MSH can decrease pituitary production of antidiuretic hormone (ADH) which can lead to thirst, frequent urination, neurally-mediated hypotension (NMH), low blood volume, and electric shocks from static electricity. While sex hormone production is often down-regulated the pituitary may upregulate the production of cortisol and ACTH in the early stages of illness, then drop to abnormally low, or low-normal ranges later.

http://www.survivingmold.com/diagnosis/the-biotoxin-pathway

This paper explains much of the same info but I found it easier to understand:

http://www.publichealthalert.org/Articles/scottforsgren/biotoxin%20pathway.html

 

I tested my son's HLA DR gene suspecting he would have trouble with lyme detox (25% of the US population has this variant, which is why the lyme vaccine failed in 2001). He was ok for handling lyme but showed a genetic susceptibility should he ever be chronically exposed to mold. This doesn't mean we have a mold problem. Only that he was less able to handle mold if it were around. On the hottest day of July, I made my poor husband rent a UHaul truck and take 10 years worth of clutter, mildewed boxes, everything in our basement - to the dump. He was ready to kill me. It made no obvious difference in my son's health but DH is now very proud of his basement! What did make a difference for my son this summer was testing him for pyroluria and starting zinc/b6 supplements. Certain minerals and vitamins also play a role in immune health and inflammation regulation. For us, this seems a better fitting piece of the puzzle.

 

You can also buy home test kits (rather unreliable) or do something called ERMI testing (somewhat expensive) or consult with a mold remediator. I don't have experience here and you'd need to post on the lyme forum. But I would start with these blood tests to see if it's something that raises a flag. My son some of the markers on Shoemaker's list come back abnormal, but most were the markers that can be elevated by either lyme or mold and we know he has lyme.

 

However, it all comes back to Nancy's point, which I entirely agree with. It's all about unregulated inflammation, likely triggered by a microbe or the toxins that microbe releases. (or more than one microbe). Find the source(s) and I personally believe you can put out the fire. I'm not at all against treating symptoms in the meantime, in the way that seems to best fit your situation. I'm just not content to accept a permanent condition - a permanent susceptibility, yes. But permanent condition, no. JMO

[MomWithOCDSon]

I'm not at all against treating symptoms in the meantime, in the way that seems to best fit your situation. I'm just not content to accept a permanent condition - a permanent susceptibility, yes. But permanent condition, no. JMO

 

Amen to that! So, officially, it's not just your opinion! It's shared . . . probably by more than you can count!

 

Thanks!