jan251

I think it makes sense to try the Augmentin XR before IVIg, especially if your gut wants you to try. Besides, by the time IVIg gets set up, you might even know whether Augmentin is going to help. Could you keep pushing for IVIg so that it's waiting in case the Augmentin doesn't help? FWIW, we are in a situation where antibiotics, including some for lyme etc., brought no relief. Now we have discovered immune deficiencies and are considering that we may need *both* IVIg and antibiotics rather than either/or.

Have you tested for the germ - sorry, I don't remember what the virus test is called, but I think it's one that is routinely tested for, isn't it? Maybe one of the HPVs? I would start with that testing and immune function (IgG, IgA, IgM, IgE and IgG subclasses, etc. etc.) plus any testing relevant to encephalitis (I don't know what those tests are, specifically). I would try not to jump to conclusions until you have a relevant test result.

Thanks for posting this; there are only 12 patients described. Note that several of them had multiple treatments with IVIg. I wonder whether immune parameters were measured. Here's an interesting study discussing possible modes of action of IVIg generally (not about PANDAS): Induction of Regulatory T Cells by Intravenous Immunoglobulin: A Bridge between Adaptive and Innate Immunity

If possible, I'd stop them all for a few days and then try one medicine at a time. (With that fast of a reaction time after taking meds, if I had to take a wild guess, I might wonder about the methylfolate as I understand it can be tricky to work out a correct dosage for methylation without over-methylating. If that turns out to be the case, I'd try a smitch of niacin to mop it up and then take a break from the methylfolate.)

This is a very, very old poll. Any newcomers want to add your IVIg experience to the poll? I'd like to see more anecdotes of success (or not) with IVIg. Here is the old vote:

If you undertook lengthy antibiotic treatment for lyme and co-infections, at what point in the course of antibiotics did you see *any* sign of improvement in OCD, even a little, such that you then knew you were on the right track? (years/months/weeks/days, whatever it was) If there was one treatment/med in particular that began to bring improvement in OCD, even a little, what was it? How long was it before that little bit of improvement became apparent? If you did both antibiotics (including herbal antibiotics) and IVIg, do you think they may have both been necessary? In what order did you do these treatments and would you do it over again differently? (Prior positive results for strep, myco, lyme, suspected bart and babs; 5 months of multiple pharmaceutical antibiotics and a few months of herbals with no improvement in OCD and no other symptoms to go by. Mulling over trying IVIg vs. a return to more antibiotics on the order of 18 months to two years, but that doesn't seem like the right path when there has been zero effect on OCD thus far. Other than OCD, lyme and co-infection symptoms are so minimal that they are not present except as possible herx symptoms during treatment. I am also wondering whether IVIg might be useful in combination with antibiotics. We are pondering IVIg while awaiting more test results that include some repeat titers.)

Bumping this old post of mine. We never did get around to trying the antihistamine. Immunologist suggested that ds's red ears (that come and go rapidly) might be a sign of histamine. I cannot come up with a reason that the ear color could fluctuate so quickly. Has anyone seen improvement in OCD from an antihistamine? Any experience with Xyzal in particular? What antihistamines have you tried and did they do anything noticeable for the OCD? (He does not have major allergy symptoms so I wouldn't ordinarily bother with an antihistamine unless it were to help OCD)

I don't recall seeing this article posted here though perhaps I missed it: FRI0516 The Largest Cohort of Children and Adolescents with Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus Infection (Pandas): Preliminary Descriptive Analysis F. Falcini1, A. Meini2, G. Lepri1, D. Rigante3, A. Ferrari2, E. Casalini1, M. Matucci-Cerinic1 It seems to me that's quite a high success rate for Bicillin, no?

A quick search shows that hydrangea root is typically used for breaking up the mineral deposits of kidney stones. I'm trying to find out more on its interaction with Ca2+, if any. There are a number of pubmed articles on halofuginone though perhaps in the context of other sources besides hydrangea. E.g., for malaria and toxoplasmosis, various cancers, muscular dystrophy, leukemia. An interesting rabbit trail!

I am interested in hearing answers to this question as well. Were lyme co-infections treated? FWIW, our lyme doc diagnosed co-infections clinically as the tests may not be particularly accurate. I don't doubt that they are present, as certain treatments bring out the co-infection symptoms more. It would not surprise me if these co-infections were causing and/or contributing to the OCD, but we have yet to see any relief, which has me second-guessing everything. With elevated strep titers and OCD, I'd probably continue antibiotics for strep in the meantime, but I might suspect that there's more going on, particularly with lyme co-infections and/or a wonky immune system. And unfortunately, I have no advice, as we are just as lost (also no response to steroids here)

The general idea makes sense to me. It's a long story, but for my PANS/PANDAS kid, gut health is at the core of the problem; I'm not sure whether it's the small intestine or the colon. I wonder whether the enema is merely a rectal delivery mechanism for the probiotics or whether there's some other benefit relating to cleaning out the colon. (For a little while I was reading about fecal transplants, though I think my subsequent reading about parasites cured me of that idea.)

I'm not familiar with Livewello. Geneticgenie.com will spit out some free info from 23andme results and prometheus.com(?) will provide a bunch of info on mutations/polymorphisms for five bucks. For info on supplements and such, you might try heartfixer.com, which I think offers individual supplement recommendations for around $30. I've been meaning to try heartfixer, which was recommended by our ND/lyme doc. FWIW, my ds doesn't do well with omega 3 either. Evening Primrose Oil seems to be a much better choice for him. (By the way, he has had positive tests for strep, mycoplasma and lyme; steroids were definitely not good for him.)

We use Broccomax to help with a polymorphism that affects liver function (fast Phase I, slow Phase II). We have not seen any change in ds's behavior whatsoever. I wasn't aware that it also had antimicrobial effects. (Bart is among the infections on our menu.) I slacked off recently in how often I give it, but for the most part I've been giving it daily for months.

Just so I understand, when you say success, are you referring to abatement of traditional lyme symptoms (e.g. joint pain or whatnot) or abatement of OCD (as in PANS)?

sarojane, are you saying that you've tried supplementing l-glutamine and had poor behavioral results and/or increase in bart symptoms? Or that you see the poor results with glutamate-containing foods? That would be interesting to hear about. I'm interested to find out a little more about L-glutamine and under what circumstances it may convert to a form that may have a negative impact such as too much glutamate in the nervous system. It's not clear to me whether simply having more glutamine present is enough, but perhaps much depends on the individual genetics involved. Glutamine generally is involved in cell growth and proliferation; see e.g. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3003197/.

I'm pretty sure it can be both ways. For one thing, some infections, the lyme/bart/babs in particular, are good at using the immune system to hide behind, as described in Buhner's books (if he is correct). The immune system and its interactions with the body's cells and other processes on a molecular level are extremely complex, very very far beyond a few handfuls of immune cells. Most importantly, while there are some theories, I'm not aware that there's any evidence at this point of what the precise mechanism is in PANS/PANDAS. It may not simply be antibodies/immune cells acting directly on the basal ganglia but involving other molecular/cellular process(es) (e.g. how is CamKII related, directly in the causal chain or merely correlative?). If anyone has heard anything new, or wants to discuss the possible theories here, feel free - I would definitely interested to hear what others think or have found. (I am only now coming to a point where I have gathered some background thoughts to go back and read works by Cunningham and Swedo, for example.)

nitshel, aside from dealing with infections and somehow addressing the root of the immune disfunction (and surely these are important pieces), to the extent that there is an "autoimmune" angle, I am looking for the "off switch." For my ds, both infections and immune issues pre-date the sudden onset of OCD by years, with low levels of lingering nervous system effects. Then the on-switch was flipped. It seems to me that IVIg is a bit of a blunt instrument when we have no idea what the off switch might even be and whether IVIg can trigger it or whether IVIg is merely a temporary fix. If I were certain that IVIg would fix the OCD on a permanent basis, it would be a much easier choice.

Nitshel, we are in a very similar place. One thing I have been wondering is whether we ought to be considering something bigger (literally) like other types of parasites. I feel like we haven't found our big gun yet. We may nonetheless need to deal with these infections, but if that's all there was to it, surely we'd have seen a bit more improvement (with antibiotics and/or herbal protocols). We only see very tiny improvements at the margin that vanish on a bad day. Intuitively, it is hard to accept that we ought to simply stick it out for two years on a lengthy protocol with close to no short-term improvements at all.

I too would be considering an underlying infection(s). We have the same experience, bad with steroids but good experience with anti-inflammatories in that sometimes the anti-inflammatories will help take the edge off, ever-so-slightly. We are dealing with strep, mycoplasma, lyme, bartonella, babesia. Steroids are contraindicated in the case of lyme.

My ds's OCD behaviors include a lot of special steps before stepping over thresholds or into/out of shadows on the floor. It looks like a strange dance (LOL, yes once in a while when I'm in a certain mood I will bust out laughing, which is never good but it sure beats screaming or crying). He was careful to hide it at school in the past, though his then-teacher had a degree in psychology so she was able both to notice the minimal behaviors and to "get it," which was awesome. One of his biggest compulsions is triggered by certain sounds (my voice! and the voices of a couple of siblings) so that issue isn't a problem at school. However, sound sensitivity can be a problem. Now in a middle school situations, executive function is becoming a huge issue, i.e. organizational stuff that would be typical for, say, a child with adhd (forgetting homework, doing the wrong assignment, not finishing, not writing the work down). He's in a difficult position because he really needs to pull it together; it's hard to explain to a teacher that medically it's not his fault. I guess I'd shoot for adhd-sorts of recommended supports. I'm becoming afraid that we may have to get ed psych testing done and get official accommodations.

FWIW, I have read about the cd57 being low as associated with lyme. I would be guessing there are lyme and co-infections still present. If you haven't gone down the route of the co-infections, I would look at that first. How far did you get with the Buhner suggestions? Did you treat for babesia and bartonella? If you do decide to try the Immutol, please give us a review of your experience! Unfortunately, baker's yeast is on the list of foods that my ds showed a reaction to on the IgG food panel, so it's not something I'd consider right now for him, but the general idea would involve polysaccharides to presumably heal the gut. If there's more info behind the general idea, I'd be very interested to hear it. Beta-glucans isn't the only source of polysaccharides so it would be especially interesting to know whether it is somehow superior to the many other forms (various mushrooms, seaweeds, etc.)

I have no thoughts on the safety issue, unfortunately. I might wonder whether the non-PANDAS sibling could be carrying around an infection.

I don't know the answer to this question and I will be listening in. I'll throw in my two cents anyway. My understanding - I'm not sure where this comes from - is that IVIg might not be the way to go if there's a current infection (lyme), either for the reason that the new Ig might kill off too much at once or for the reason that the new Ig will turn off some immune function, a bit like a steroid. Then there's the question of lyme depressing the immune system, but that's a chicken-vs-egg question in my mind - which came first, the depressed immune system that couldn't handle the lyme or the lyme that depressed the immune system, or is it a vicious cycle? My overall sense is that IVIg is a bandaid and ultimately can't permanently fix the immune system if the cause lies elsewhere, with a messed-up gut. On the other hand, there are days when I'd gladly take the bandaid if it would help even temporarily. Whether to include it as part of the overall package of treatments is, of course, a case-by-case decision. It is not without risk and obviously there is great expense. I really like a lot of Buhner's ideas - I'm using a lot of his suggestions - and I'm starting to look at Cowden a bit as well though I don't know much about his program yet. Buhner seems to have some solid ideas on inflammation and infection specifically for lyme and co-infections, but where I think Buhner's plans fall short of being enough for PANS kids is not addressing immune/gut function. That's the million dollar question - how do we fix the immune system? Some people treat that by a combination of gut supplements (e.g. l-glutamine for tighter junctions, probiotics and such for the microbiome) and temporarily avoiding triggering foods. (And if I go way, way out there, I wonder about immune function that arises from bone marrow...) I also worry about (non-lyme-related) parasites. Thinking out loud, I have no idea what becomes of a parasite situation when a patient is treated with IVIg. Adding: I say this from the perspective of having a child with a history of immune and nervous system issues, but nonetheless had that "on" switch for OCD switched on at a point in time. Where's the off switch? Is there an off switch if there are antibodies to, say, glcnac or is there an element of permanence? Could IVIg be the off switch? Do we even want an off-switch (such as IL-10?) if there's current infection? (He has had strep, mycoplasma, lyme, babesia, bart)

Double check this, but if I recall, overdoing the methyl b12 can be undone with niacin b3 (which can also be overdone, so if you try niacin, just a fraction of a capsule). I don't know more, but I totally understand how it goes when adding something makes things worse and then stopping it makes things worse. In this case, I would stop it until you can figure out what to do (e.g. lower dosing).

I'm bumping this to see if anyone has anything to add. In my recent reading, I noticed that dilated pupils can be a symptom of certain roundworms (e.g. ascaris) and that's fascinating. I have also seen constipation mentioned as a possible symptom, though it's unclear to me whether that would be chronic or acute constipation. If you've treated for (non-lyme-coinfection; intestinal-type) parasites either on purpose or accidentally (e.g., Rowingmom, I'm thinking about your list of treatments as including several things that would also help w/parasites), and you've seen improvement, it would be helpful to hear how that worked, what you used and what you observed in what sort of timeframe, etc. Does anyone know whether curcumin could be contraindicated in a case of intestinal parasites? Apparently there's a study touted as showing benefits of curcumin because it increases the lifespan of nematode roundworms.