MichaelTampa

I am 5'5", so a bit on the small side. I should add that the growth hormone and testosterone were on the low side but not way out of range. Insulin like growth factor IGF-1 was 99 with a normal range of 101-267. Testosterone 7.9 with a normal range of 6.8-21.5. Vitamin D 25 hydroxy 17.7 with a normal range of 32-100, he said he had never seen so low. He suggested supplements for all of these to start with, but thought we might need growth hormones later on, so, though just a little low, it seems he saw it as a real problem. Regarding primary immune deficiency, I don't really know what that is. We did test CD4 and CD8 levels, and he said that was good, showing slightly high immune system "availability", not sure exactly the word, but this is not measuring immune system activity, but, rather the cells that would be used for such activity. Is PID different? Michael

I just got a mess of blood test results yesterday. A few things were deficient, and I am curious how much might be PANDAS-related versus how much might be due to other factors. It did show deficiency in vitamin D, growth hormone, and testosterone. Has anyone else seen this? I have been supplementing with vitamin D, although admittedly not as perfectly as I might. Has anyone heard these things are common in PANDAS, or anything like that? Michael

Regarding the plasmapheresis, where albumin is added, where does it come from. Wikipedia says eggs have lots of it, and medically it normally comes from other humans or cows. If one real distinction is that the plasmapheresis doesn't involve a second variable, I'm not quite sure what we would look at it that way. If products from human blood are to be considered a variable, I would think products from blood of another species would be considered even a greater variable. Or is the albumin really from food, or chemically produced? Michael

Faith, I believe he said it is a protein in the blood. He didn't talk about it for that long, so your questions are about the same as mine. Yes, I think that is exactly what he was saying, that this activity would cause a deficiency of pyruvate, which is why he suggested the possibility that supplementation might be helpful. But he didn't address the question of, will there be more antibodies to destroy the supplemented pyruvate, and what is the result of all the destruction. In the older thread, you see he was starting a study, and the reality is that he probably did not know the answer to these questions. Yes, I was also confused to be hearing he so much about cam kinase, and then he said that it's already figured out, it's pyruvate kinase. No idea... Michael

Here's a little bit more on the pyruvate. In my stores, there are basically two pyruvates available--one they mention here and the one I bought. I bought the vegan tablets rather than the one with gelatin capsules they are using here, and believe I will be doing an informal study on myself in the coming days. Couldn't be any more reckless than the liquid fluoxetine (generic of prozac) I've taken, could it? Michael

In the Dallas conference last year, William Shaw, director, Great Plains Lab spoke about PANDAS some, one of the things he said was that pyruvate kinase had just been shown, independently by 2 different labs, as what gets attacked by the strep antibodies gone bad. The conference was in May 2009, and the "just been shown" meant late in 2008. He suggested pyruvate as a possible supplement to help. It is available in health food stores, is taken some by athletes and people looking to lose weight. Puzzling he didn't mention using a pyruvate kinase test as diagnostic, or mention the CamKinase test and how it relates or doesn't. Not sure the supplement of pyruvate is a good idea, but probably will be trying. I muscle test good for it, which likely indicates a deficiency, and not necessarily that it's a good idea. In theory, if it's being attacked, perhaps taking more pyruvate will just mean I have more attacked/damaged pyruvate, and not sure why that would be a good thing. Or, perhaps the pyruvate will be so much that the antibodies can't kill it all and the end result will be good. Who knows? Has anyone tried? Can anyone shed any other light on his comments? Michael

Now I'm really puzzled about this over-active/under-active immune system. When Dr. T posted his paper-in-progress discussion, I guessed I was in the overactive subgroup, with the 186 CamK score being in the "high end PANDAS range", and also all the constant food allergies sounded like overactivity to me, although he did not list it. All the other tests have not been reported yet. I'll be getting some results on Tuesday I hope. But, I do get sick a bit more than others, am generally weak, and I see the logic of looking that as under-active, and am quite sure yeast has been a long-standing issue. Hmm... Michael

Haven't seen any discussion on it yet, thought I'd make sure people are aware. The conference was in May 2009, and zenworksproductions has made DVD's of the entire conference. Lots of great thoughts and ideas to consider, including treatment-wise. Even some discussion of PANDAS. I got an e-mail from Sheila Rogers saying the DVD's were available, but maybe got it as a subscriber to her newsletter. I am sure anyone could purchase. The entire conference DVD's cost $175. They also sold each presentation separately. Michael

I haven't spoken with a PANDAS doctor yet to hear either way (first phone consult with Dr. K. is now scheduled for this coming Friday). But, I will say, I have been battling with a candida infection for many years. It is bad enough, I have occasionally wondered if I really might have PITAND where the other infectious agent is candida. But that is pure speculation, no idea if it's even possible with a fungus. Michael

I had anesthesia a few months ago for an endoscopy and then two days later for a colonoscopy. I guess these are relatively short procedures, but, I'll say, the hour just after waking up was just spectacular, the most relaxed I've ever been (that I can remember). Even the next 12 hours or so I was very relaxed, the fluorescent lights really didn't have the same problem for me they normally do. Michael

Not only do I really struggle with the science, I can't even figure out what's cool about ajcire's username! Every time I see it, I pause for a few seconds and try to figure it out, and it remains a puzzle. Help!? Michael

My understanding is that acne results from the body getting rid of toxins from the skin. It seems that could have many causes, and just one of the many could be antibiotics themselves, if the body is having a difficult time processing them through the liver and whatever else. Michael

Faith, Complicated situation for sure, only skimmed the thread here. I do like the idea of a more MD-style immune-style work-up, perhaps from an immunologist or maybe holistic MD, if affordable. Basically, if the antibiotics aren't working, it does make you wonder if it's not bacteria, but virus. But, I also want to toss out the possibility of fungal infection (candida or otherwise). I just got the DVD's from last year's TS/Tics/Depression conference, and am seeing they talked about that a bit as potentially significant for these types of disorders. As I've got more into the candida fight myself, I have noticed the long list of symptoms candida can cause, and how much overlap with PANDAS, and it makes me wonder about PITAND from candida. Anyway, just wanted to toss out those thoughts, and wish you luck in getting it figured out somehow. Michael

I do a lot of foot tapping and twisting, left-right-left-right, as apparently a number of the chorea symptoms are. I don't have a big problem with it at night in bed, but then I am clenching my hands a lot then to calm myself down. But, I also do have the candida. Reading this thread reminds me, on some sites that list many many possible symptoms of candida, there are a number of symptoms that are on both the PANDAS list and the candida list, including sensory sensitivities. Michael

Back a couple years ago when migraine headaches were a serious issue, I had an MRI to rule out brain cancer and get me to relax, as the doctor put it, and it showed sinusitis. I have never complained about a sinus infection, symptomwise, and I think was just learning where the sinuses are at age 35. Not sure how I missed that bit of information. I guess I could add that lowering elevations (like landing on an airplane) has always clogged my ears for a couple days, and sometimes been quite painful, so perhaps that is a symptom of the sinusitis (I don't really know). Now, a new doctor I am going to, who has prescribed various antifungals for candida, saw the MRI results and because of that, also prescribed the antifungal ketoconazole, which is sprayed into the nose, either thinking the candida is in the sinuses, or maybe just in case. But, I have been wondering, sure, maybe candida is there, and maybe strep is there, perhaps we'll find out eventually. Michael

Actually, forgot to point out, also, the initial antifungals definitely reduced genital itching, but then with the nystatin, the itching increased again, and decreased again a day after I stopped the nystatin. I have read that the die-off can make you "feel bad", but by that, can it actually be an increase in candida symptoms?

Thought I'd toss this question out, in case anyone here can help. I have had very serious candida infection for over a year, very likely many years. After many months on an extremely restricted diet and other supplements designed to help, I started on antifungal drugs to see how that goes. I started on diflucan for about a week, and had mild headaches a lot and did get more energy. I then added ketoconazole, a nasal spray, as the doctor has suspicions about it hanging out in the sinus area. Just more of the same, and felt pretty good about how things were going. The next day, I added liquid nystatin, an "antibiotic antifungal". The introduction of the drugs was staggered really more as it took time for the pharmacy to make them, but somewhat glad it turned out that way. With the nystatin, I ended up with hunger after eating, and had a nap after lunch the day I introduced it. Took 3 doses that day, 1 dose the next day, then stopped, seeing those symptoms as a candida flare-up (not considering die-off as a possibility for those symptoms). My stool, which had miraculously turned more or less solid and normal 3-4 days before I started these drugs, also went urgent and very loose, and continues now that way, even 3-4 days after I stopped the nystatin. The hunger after eating and needing naps did stop, though. [The loose stool has been a problem for decades, and I had been getting improvement with straightening out spine and getting muscles loosened up, and did just have allergy treatments, so the improvement was not unexpected. I did recently add two other supplements, a stronger vitamin D and other probiotics, so they could also have caused the loose stools, and I am stopping them today to see if that makes a difference.] I quickly blamed the nystatin and stopped it, in part, because I hear that antibiotics can cause flare-ups in candida, and it is an "antibiotic antifungal". And yet, it is commonly used to treat candida. A bit confused by the phrase "antibiotic antifungal". I had assumed it meant that it is an antibiotic and an antifungal. But could it mean something different, like it is an antifungal that is a little bit special but not an antibiotic? Has anyone had the hunger and naps as part of a candida die-off, really headed in the right direction? Michael

RF and PANDAS are both strep-related. From the Cunningham study, the RF people have more CamKinase activation than the PANDAS people, but it seems to be a very similar situation in some respects. From reading this forum, and examining my own symptoms, it doesn't seem to be that you exclusively have just PANDAS symptoms or just RF symptoms--you can have a bit of a mixture. I have PANDAS (pediatric-onset), but happen to have had frequent nosebleeds as a child. They decreased quite a bit as I became an adult, but I expect it is still more frequent than most adults. Michael

I put internet. More specifically, it was on this latitudes forum, getting on for the TS board, saw it there and just ignored it for a while, eventually heard enough about it on the TS board to realize I should pursue it more on the PANDAS board. Michael

I most like the ones Suzan has come up with, but have concerns with "nads" being short for gonads. Not sure if the kids use it in school these days, but they did when I went to school. Also, NASD is very close to some of those, and has another meaning. How about: Neuropsychiatric Autoimmunity from Strep I also share the concern of whether it is the "right time" to try to change it. No strong opinion, but wondering about that. Would the name change bring attention? Would it just confuse the matter? One problem with the current PANDAS name is to have people learn about it, they will want to google it, and unless you know something else about it, all you get are the animals. For example, I will tell people to google PANDAS along with Tourette's or neuropsychiatric or neurological or strep, and that works, but none of those are easy things to remember or spell either, and again, if you don't know about the condition, you may not know to do that. Michael

Dakri--I certainly will be trying the strep vial, probably in a couple weeks, but we'll see. I don't get to the NAET person very frequently as I have so many other doctor type people I go to, and she is kind of far away. I'll certainly post results, and also interested if/when you try. Stephanie--Hello. I am 42. I was diagnosed with Tourette's about a year ago, and that diagnosis explained a lot of things. I have just recently looked into PANDAS, and got a Cunningham CamK score in the high PANDAS range, and really, the PANDAS explains much more. Looking at me with pre-Tourette's-diagnosis eyes, you might describe me as someone who is very nervous and anxious and antsy and worrying a lot, with very poor digestion and acid reflux and loose stools and food sensitivities and candida, who has unexplained sensitivities to fluorescent lights and cellphones and other wireless devices, to a lesser extent, perfumes My symptoms from the fluorescent lights and wireless devices are: headaches building to migraine headaches over hours of exposure, poor sleep (frequently waking up, not getting good rest, nightmares or just very bad dreams), on), digestive symptoms worsened, increased urine dribbling, increased sensitivity to sounds and smells, inability to focus, exhaustion, and irritability. With enough exposure, the irritability will turn into rage attacks with just the slightest provocation of someone doing something that doesn't seem to me as fair or right. I have hit people, even as an adult, and as a child, I was so enraged that I brought a knife in an attempt to teach a bully a lesson (someone much bigger than me, really very stupid action from the self-preservation action). At work, I have sent e-mails that I deeply regretted later, and knew I would when I sent them. These rage attacks do pale in comparison to some of the horrific descriptions I have seen on this board of some PANDAS child rage attacks, but they certainly are undesirable and do lead to real problems, I am probably lucky to have escaped worse consequences. Going through the symptoms of PANDAS from Dr. Kovacevic's website, webpediatrics.com, I note that I have almost all of them, but not all. I have poor handwriting, but not atrocious, and my math skills are absolutely top-notch. Things I do have are: - OCD symptoms (intrusive thoughts, anxiety, obsession with order/cleanliness/precision, death thoughts, repetition of obscene words or phrases) - sleep disorder (insomnia, inability to fall asleep, frightful sleep, nightmares) - behavioral regression (separation anxiety, “baby-talk”, temper tantrums) - aggressiveness, hyperactivity and/or ADD - during exacerbation, wide pupils (appearing terror stricken) or appearing to look through you rather than at you (appearing “not really there”) - various and evolving tics (eye blinking, tapping, facial grimacing, coughing, throat clearing, uttering words for no apparent reason) - adventitious movements (adventitious = spurious/accidental/unusual/abnormal) - frequent urination (18 or so times per day), and uncontrolled dribbling post-urination (prostate doctor at a loss to explain) - short-term memory loss - mood lability - increased sensory responses (increased sensitivity to light, sound, touch, and/or smell) Not on his list, but I consider part of the echolalia, is love for repetition, such as one sees on shows like Seinfeld, where the same joke is basically repeated the whole show. For movies, I really love, I will insert a quote from the movie in conversation whenever the opportunity comes up. While my TS or PANDAS or whatever symptoms have really heightened over the last few years with stressful situations and a very traumatic incident in 2006, will say that basically all of this has been there since childhood, just not as bad. I will point out, though, Dr. Kovacevic's website also talks the possibility of an adult-onset PANDAS, and so you may want to look at that as well. I'm a little new to the PANDAS scene, but haven't heard a lot about depression being a primary symptom. Others may chime in, but I would suggest you look at the other lists of symptoms. There is always the Cunningham CamK test, too. As an adult, it will be extremely difficult to get an adult practitioner to believe you have PANDAS without some blood test giving some objective assessment. PANDAS almost doesn't exist, and adult PANDAS is more that way. I will say that I have had extremely low serotonin scores in the past, when they were tested a year and two years ago, and I have been in several month bouts of depression-like symptoms as well. It came at a time of severe stress in general, and with a lot of important things not working out so well in my life. With a lot of supplementation, and I do mean really a lot, am not quite in that depression place anymore, but I am certainly in the nervous/worry place still. I am certainly hoping that the PANDAS treatment, along with the eventual end of this one big project in my life, will help a lot. I am really just getting started on the treatment path, lots of blood tests ordered for Dr. K. and my local doctor, and in the meantime taking antifungals for candida. Michael

Tryptophan has always been one of those mystery supplements for me. My doctor uses energy testing to determine if my body would benefit from a particular supplement, and how much to take, when to take it, and so on. This has proven to be a very effective and valuable tool. Though some scoff at the energy testing, or don't understand it, because it looks too much like magic, it is real. The proof comes when I take things that I test bad for, I get worse. When I take things I test good for, I get better. When I run out of things I test good for, and stop temporarily, I notice, and so on. All that being said, tryptophan, along with taurine, are the ones that I keep testing as being good for me, but, whenever I take them, it's bad. Tryptophan made me absolutely wired and unable to sleep, and maybe a slight headache. This is more or less the opposite of the intended effect. So, I am also interested to hear others' results from taking tryptophan. Michael

My experience with NAET is just needles for acupuncture and vials you hold with the offending item in them. I have never heard of machines being used for NAET. In Florida here, I am paying $60 per treatment after a more expensive first visit. In general, I would expect prices per treatment to be similar to that of an acupuncture treatment--that is what it is. One treatment is supposed to be a permanent cure for the allergy (caveat to my experience, discussed above). In my experience, what did make it expensive and time-consuming was needing to treat so many different food items, and only able to do 1 or 2 items per treatment. But, if you're treating strep, in theory at least, it could just be one treatment. Michael

For those unaware, NAET is an acupuncture treatment for "allergies". It is mostly used for food, but can also be used for other things such as perfumes, animals, and so on. I used NAET a number of years ago quite successfully to improve my digestion enormously. I had allergies to almost every food out there. Unfortunately, while the treatment is supposed to be permanent, the allergies did come back over time, some sooner than others. I look at it as, we still didn't remove the reason the allergies were created, so they were just created again. Perhaps that "reason" is Tourette's or PANDAS, perhaps not. In the meantime, I have been struggling so much with digestion and food allergies, that I am going back to get a few basic vitamins, minerals, and maybe a couple foods treated. But, going to a new practitioner this time, telling her the recent PANDAS "diagnosis", she points out they do have a vial for strep, and also for basal ganglia. I am more hopefuly on the strep vial, if PANDAS is a "bad" reaction to strep, that is exactly what an NAET treatment for strep would do in theory, is remove the "bad" reaction to strep. Now, the only catch is, are we really talking about the same "bad" reactions to strep. NAET is in theory for "allergic" reactions. If I have heard the PANDAS reaction described in more detail, the bit fancy words just went right through me, so I don't know how likely the meanings are to match up. But, I am certainly thinking that is is worth a try, while I wait for blood test results to get going with PANDAS treatment more seriously/traditionally. Michael

Just as an FYI regarding the Cunningham test, it is possible to avoid the costs of a doctor to prescribe and the costs of the blood draw itself. I asked my doctor to prescribe, and while I waited and waited, and saw the year-end close of the study become more and more imminent, I went to a local outpatient clinic where I had endoscopy and colonoscopy a few months before. The people in the blood drawing section did it for me without a prescription and without any charge. When I told them it was a research study to help better distinguish TS and other tic-related diseases (rattled some off), they reacted that this type of thing was really important and wanted to help. I do believe they remembered me from before as well. Anyway, just want to point out, that is a possibility (for some, anyway). Michael