MichaelTampa

PacificMama--So happy to hear the news, and so happy to hear I'm not quite the only one. I have been troubled by the wireless and also fluorescent lights for a long time now, although I do have significant symptoms when avoiding them. I am actually on disability leave from work now, directly resulting from recent installation of wireless at the work office. Interesting to hear your daughter has lyme as well. I have recently been getting tidbits of hints that I may have lyme as well. I'll be getting blood test results in a few days for that. I am so much wanting to hear that there is a solution to the EMF sensitivity, that it is some illness, as it is just getting harder to avoid them. Do you feel the lyme is under control at this point, and she still has this sensitivity? Or is the lyme still a real problem? Any other infections of note? I have a serious fungus/yeast infection as well. Like so many other infections, you can have them without really knowing. CSP--WiFi is the short name people use to refer to cellphones and wireless computers and systems and other devices working on similar principles. They actually use EMF's in the range officially referred to as microwaves ... yes, the same things that microwave machines use. Michael

mom-to-2, Thanks so much for your thoughts, will look into some of these things. On the EPA/DHA ratio you are discussing, I am getting like 230mg of DHA and 4mg of EPA, a ratio that is way off from what you are suggesting. Did you mean 7 EPA for every 1 DHA (suggesting I'm way way off since I have more DHA than EPA), or 7 DHA for every 1 EPA (suggesting I needing to increase EPA by about 30mg). Or maybe you're suggesting the ratio of at least 7/1, so higher is okay, and what I am doing would fit your criteria as long as you meant 7 DHA for every 1 EPA? Michael

Very interesting thought there. Perhaps that's part of it, certainly a different theory than the doctors are working on, which is that the steroid burst reduces inflamation (unless it does that by reducing arginine levels). Would love to hear what an MD would have to say about it, maybe will get a chance to ask mine next visit. Complicated stuff. Regarding my high taurine levels despite not consuming any, yes, about the only theory I can come up with is that from my TS or PANDAS issues, my body really wants the taurine to help with the situation, so it is making as much as it can, disregarding whatever the range considered to be normal would be. This is consistent with the fact that a number of people with TS do benefit from taking taurine. For some reason, my body can't handle taking the taurine straight, and I guess that's just another unanswered puzzle. On these boards I do see a bit of this amino acid helps for this person, another person reacts poorly to it, and so on, and it definitely seems like these are all clues if only someone could really figure it out. Fixit--Unfortunately, I have no ideas there to explain what you are seeing, but do encourage you to keep at trying to figure it out, as it probably is a significant clue. Michael

Pat, How interesting about the OCD vial, will have to give that a try at some point. Right now, working on PANDAS and treatment for various infections such as bacteria. Come to think of it, I think a number of years ago my NAET person at the time did go through a couple of emotion vials with me. Regarding the device to change the bite. Are the compulsions at all related to the mouth ... I mean, if now he has a compulsion to wipe his finger around the inside of his cheek (just to make something up) ... maybe it's just part of getting used to the device in the mouth. I remember it being quite a bit of an adjustment period physically, and also in terms of learning how to talk again and learning how to not drool all the time (7 months later, I still drool occasionally while cooking). Perhaps the anxiety of learning how talk differently, eat differently (if eating while it's in; I can't do that, but some can), and all that is just causing it? I really didn't experience any compulsions or anything like that while starting with my device. The good results came pretty quickly and were noticeable. For me, what I got was lower heart rate and overall more relaxed and less worrying, it was obvious in 2 days. That was really nice, although admittedly not nearly all that I was dreaming it would be (and now I see some reasons why with the PANDAS/infection route). I have seen with others, in generaly, whatever people get out of them, it tends to come pretty quickly. That makes me concerned about the possibility of somehow the adjustment being a bad one, if it's causing compulsions, unless there is some other reason for them, such as what I suggested above. Could the NAET treatment on Friday possibly have something to do with it? What was it for? When I have been treated with NAET for infections like strep and lyme and mycoplasma pneumonia, it caused coughing (for the first infection I treated) and increased coughing (for subsequent treatments), like my body started fighting these things now. So, sometimes these treatments can cause reactions that are a little bit counter-intuitive, and you might think about that as well. Michael

Pat, That's great to hear. I'm a fan of NAET and have found it helpful for some problems as well. Could you share what type of vials the treatments are that are helping with OCD? A lot of people do NAET for food, but I know they have a lot of other more "funky" vials, and very curious what it is you're using. Michael

jewels, I don't have all the answers to your questions, but do have some experience and information on these amino acids. I recently had a blood test result showing low growth hormones. My MD told me to add cysteine, ornithine, lysine, and arginine to me supplements. Ornithine is almost impossible to buy alone--it often comes with arginine. When I took arginine/ornithine, which my body said it wanted through muscle testing, I felt bad, kind of a buzzy/foggy head. Though muscle testing has been very successful in predicting if an addition will be good or bad for me, it has been touch and go with amino acids. Taurine and tryptophan have both done this same thing of test good and then feel bad after taking (but 5HTP is fine--it is tryptophan already combined with something else in a certain way). Martin Pall's book that I just read, "Explaining Unexplained Illnesses", has explained a lot of various experiences I have had with PTSD, chemical sensitivity, and chronic fatigue symptoms and supplements and other treatments--truly amazing--and I think it has a lot of applicability to PANDAS. The theory of the book is these conditions are basically too much nitric oxide in the body, resulting in a vicious cycle that is just very very difficult to get out of. I wish I could find the mention or two he had of arginine ... did he say it increases nitric oxide, and was bad for that reason? ... or my sense is, it might have been an even more complicated explanation ... I don't know. In any event, I would expect arginine would be a bad supplement for many PANDAS patients, but I certainly wouldn't make an absolute statement. I separately ran into other sources that NAC (n-acetyl cysteine) can be good for chronic conditions and TS/PANDAS conditions. This has been excellent for me, and given its number of recommendations from different theories, I really think it belongs very near the top of the list for supplements recommended for PANDAS. Lysine I take also, and it is not causing me any problems, I'm not sure how much it is helping me (truly not sure, no really poo-poo-ing it), perhaps it is helping some. The lysine I test for to take with a meal, with breakfast and lunch, so you might consider when you are giving it, it is possible that earlier in the day with food is a better way to go (but can't guarantee it, that's just my experience). "1 Do PANDAS children get better as the Arginine levels in the body drop as they get older?" Interesting question. I had always assumed it was the steroids from puberty. For what it's worth, my arginine at age 42 and still crazy with PANDAS, is 98.5, about in the middle of the very large normal range (28 - 159). And, my lysine level is low, 87.2 from a range of 110 - 290. Ornithine about middle of normal, and cystine at the high end of normal, despite the fact that NAC is so helpful. "2 Is there an improvement DF?GF when arginine food levels are removed?" I'm guessing you ask this as you mention the wheat and dairy as sources. It could be. However, I'd caution you to consider, for a good number of the amino acids, the body can convert them from one to the other as it sees fit. You might look to see if arginine is that way or not, and what other sources of arginine there is in foods. One thing that was a big surprise in my test was the taurine being high (outside normal range) and cystine being high end of normal. As a vegan, I do not consume anything with taurine (particularly since my body reacts poorly to the supplements). It can convert cystine to taurine, but while cystine is present in a vegan diet, it is supposedly present in smaller amounts, and I have plenty of both...very strange. Michael

According to a book I've read recently, that seems to fit my experience quite a bit, mitochondrial dysfunction is common in chronic diseases like chronic fatigue syndrome, mutiple chemical sensitivity, fibromyalgia, and PTSD--all conditions where nitric oxide levels are too high. The book also makes brief mention of lyme and rheumatoid arthritis/fever, and I really believe PANDAS fits into this category, based on my experience and from what I read on this board. Yes, CoQ10 can help (but have to admit, while I've taken many supplements, I've never tried this one, but not for any significant reason). Michael

smartyjones, The first NAET person I went to, he set the timer for 20 minutes, meaning, the rest time while the treatment needles were in was 20 minutes, then he came in and took them out. Of course you have testing time and taking shoes on and off and all that kind of stuff. I think there I was normally out of there 40 minutes after I came in. The person I go to now, it's about 80 minutes later when I leave, I'm sure she has me resting with the treatment needles in for a longer time. Of course, now I'm a crazy PANDAS case, with a developing situation regarding blood tests and so on, so we have a bit more discussion on what to try next to get the most diagnostic and treatment benefit from it, and this takes time too. Really using diagnostic tools and treatment tools wherever I can find them, but using bloodwork for diagnostic, and NAET for diagnostic and treatment, and of course symptoms as well as a diagnostic tool, and just trying to put the pieces together as best as possible. Using traditional meds where seems absolutely necessary. Antifungals have been awesome for me. Antibiotics, we'll see, it's been tough sledding so far, because the fungal infection isn't gone, the idea of being diagnosed with lyme and NEEDING antibiotics long-term is a scary proposition. I have 6 months to return to my job from disability before I'll just lose my job, and the prospect of getting the fungus killed off well enough to even handle that much of antibiotics, that sounds grim in terms of being able to do it in that timeframe. Maybe the NAET and all the other things I'm doing can help the traditional meds work better--oxygen therapy, plenty of supplements, acupuncture, and so on. I recently found a biofeedback test I had a number of years ago that showed a problem with rickettsia--a coinfection with lyme disease. Not sure how reliable that reading is, but, as a result of seeing this, when I sent away for my lyme tests, I checked that box as well, to have them look for rickettsia. At the end of the 25 hour avoidance period immediately following pulling the needles out, the story is that the "allergy" is "permanently" gone. Keep in mind, most uses of NAET are for food allergies/sensitivities, and if you are reacting very poorly to a food, then treat it, then eat it, it is really quite easy to see the difference--quite amazing. As for the "permanent" part, let's be honest, this treatment doesn't get to the reason why you ended up being allergic to the thing in the first place, and if those conditions remain, you can get the allergy again. This happened with me a number of times with certain foods, and a few months ago I find out I had just an incredibly brutal fungal infection, which can lead to food allergies, and so that explains the reoccurences. When using NAET for the more esoteric things ... strep, lyme, and so on, again, the "allergy" is gone after 25 hours. But, what improved health will you see? How will you know? Perhaps, if that infection isn't in your system, there won't be any improvement. But I am guessing for these chronic hard-to-get-rid-of things like strep and lyme, you get the allergy because you've had the problem for so long and it's really taken a toll on your body, chances are you will still have the infection. But still, what improvement--perhaps you can now fight the infection a little better ... but ... well enough to really kill it? If PANDAS is an autoimmunity to the antibodies to strep, perhaps the best NAET treatment is treating the allergy to the antibodies for the bacteria, not treating the allergy to the bacteria. Indeed, a couple years back, a parent posted of successfully treating a child from PANDAS with the antibody treatment. If I remember, she posted that the cure was pretty obvious pretty quickly (a couple days?). I am certainly pursuing treatments with the antibodies as well ... at this time, my practitioner does not have vials for them, but I told her to get going with that. I do think it makes sense, even in this wonderful outcome, to still try to remove the infection (antibiotics or whatever else can really do it), because, if you don't, then you can just end up in the same spot later on, similar to how my food allergies returned and returned. Michael

Buster, What you wrote is a little on the technical side for me, but I think I understood it. I think you're saying that for someone with PANDAS, an SSRI will just make the mood swings (peaks and valleys) more dramatic. I have to say, back when I was being treated for "depression" with fluoxetine (generic for prozac), I described the effect it had on me, in a matter of a couple/few days, as making me bipolar. Seems to fit well with what you're said there. I've always really marveled at the number of psych- people I've seen, and not one of them ever suggesting bipolar! I have sometimes felt that way. And now to see this list (later in the thread) of the bipolar symptoms ... let's see now, we have bipolar, PANDAS, lyme, and fungal infections all with more or less the same list of symptoms ... have to agree with the "holy guacomole" comment! My inclination, just intuition I suppose, is to agree with, I think it was EAMom's idea, the bipolar is more likely to be the misdiagnosis. After all, that's the one that just says you're screwed up forever and we have no idea why, which, to be fair, isn't a very sophisticated theory. Michael

Gat's mom--I'm keeping the charcoal in mind, but really not sure what to do. I am taking lots and lots of supplements all throughout the day, really needed to keep any semblance to health/functionality, and keeping off the yeast. Also, with antifungals at every meal, and the antibiotics first thing in morning and last thing at night, not really sure there is any time to take something like charcoal away from the drugs. I am taking psyllium husk powder for yeast die-off, and the amount I needed did increase at the beginning of the antibiotics, for a couple days, so perhaps it took care of the die-off. smartyjones--The way naet works, it involves holding the item being tested in hand while they test how your energy works in another part of your body. If it goes weak, the substance is a problem that could be treated. Treatment involves, again, holding the substance in the hand, while some acupressure is given on the back (reset immune system) and then acupuncture is given in specific points for naet. Then, you avoid the substance (eating, touching, etc.) for 25 hours and in theory you're good. Next visit they can test to see if it held. I did get treated for mycoplasma pneumonia a few days before I started the antibiotics, and I think it started my body fighting something in it (perhaps good), I got treated for strep and a few other bacteria a few days ago, and actually got treated for lyme just this afternoon. Most familiar with NAET also consider how weak you are to the substance (when testing, before treating) a sign of how bad the problem is. I was incredibly weak to lyme, very weak for mycoplasma pneumonia, and weak for strep, and it will be interesting to follow that along with other blood tests and treatments. Kind of using this as an additional diagnostic tool, as all the blood tests are just for antibodies and are certainly not perfect in picking up the antibodies and can always be misinterpreted (no antibodies means your immune system is too weak to make any? or does it mean no infection needing to be fought?). wornoutmom--Thanks for the heads-up. I'll keep in mind. As a matter of updating generally, it's been 3 days now, still not a long time as Dr. K. said to assess after 14 days, but, as of this time, I have not noticed anything good coming from the antibiotics. Michael

My guess as to what the psychologist meant in terms of flax oil "not transferring" is, a lot of what is believed to be important for the brain is DHA and EPA--very specific types of omegas. Unless you are getting flax oil that has some of those added, flax oil really won't have those, it can make some of these from the flax oil, but the "conversion" rate of "utilization" rate is said to be relatively low. Michael

Caryn--I have recently realized that yeast issues have been very serious for me, and getting to do what I can about it with antifungals and more serious dietary changes. I have seen the recommendations of Doug Kaufmann, and here you mentioning wheat and corn are 2 of the top 3 in terms of mycotoxin load (is that the same as yeast/fungus load?). Given I have to eat something, what I think would be useful is a list for the various foods, what is the mycotoxin load or yeast/fungus load, so I can better switch from the bad ones to the good ones, kind of know the choices and know the effect of the choices. I imagine the numbers vary from sample to sample, but still hoping there is something somewhere that would give numbers that would be a little more specific guidance. Do you know of anything? Fixit--Your comment (from Doug Kaufmann and your conversation) about the IgG blood tests perhaps being more about the yeast/fungus/mycotoxins than the food itself speaks to me, because I have two of the IgG tests done by the same company, 2 years apart, after various allergy treatments, and what I noticed was how the results from the two different tests seemed almost completely random. Dairy showed up strong on both, something I haven't eaten in years and years, but, other than that, just random numbers. They had nothing to do with what I was treated for, nothing to do with foods that I felt my body reacted to poorly (in terms of how I felt and diarrhea and so on), nothing to do with foods I ate a lot of recently or had urges to eat (which I hear are often good markers). It's like it just meant nothing. At the same time, I'm having trouble exactly understanding what you/Doug are suggesting. Is the testing company using different food samples over time, rather than the same thing, and it is really measuring how much yeast/fungus/mycotoxins their food source has? Or something else? Just not understanding exactly. Michael

What Vicki said is definitely the theory Dr. K. is going on. He felt my symptoms and blood tests looked more like myco-p than strep, although admittedly in a couple of ways I looked like a blend of this and that. (The story of my life of being an enigma to everyone.) NAET testing did show allergies to both myco-p and strep, and so that could account for the blend of this and that, it really could be both myco-p and strep for me. Michael

Well, things did calm down a bit after lunch, and are starting to act up again. Antifungals with every meal, so hopefully dinner with antifungals will help. I've started with probiotics every couple hours and hopefully that will help too. Vicki--I did NAET on mycoplasma a few days before starting antibiotics, and the result of that was a little coughing did eventually start, a couple days after treatment. I'm assuming that got the body starting the fight a little before the antibiotics kicked in. (Faith--turns out the NAET did clear.) Yes a little bit surprising that the yeast would get that out of control after 2 doses. It had been a serious yeast infection, but I had made quite a bit of progress with it--not sure how much was left, or how quick the yeast can explode, my first experience like this. Guessing it's not mind over matter, but who knows, really came on pretty suddenly after a relatively uneventful doctor's appointment, my mind was certainly elsewhere at the time it happened. Gat's Mom--Haven't heard of activated charcoal in a while. You're talking about the capsules people swallow? I am taking in the morning psyllium husk powder for yeast mop-up. Charcoal is good for yeast mopup or bacteria mopup? I was mycoplasma positive, but not strep positive, on the bloodwork. NAET testing showed sensitivity/allergy to mycoplasma and strep, but stronger reaction to mycoplasma, for whatever that's worth. That is not necessarily indicative of current infection, but could indicate had a serious problem with the infection at one point. Michael

Hi Jane, I am 42 with PANDAS. Dr. Kovacevic (referred to as Dr. K. on this board, he is one of the experts in the country, and does phone consults) actually sees my case as somewhat of a hybrid between pediatric onset and adoloescent onset. I have had plenty of the stanard symptoms for as long as I can remember, even back to childhood. My most debilitating symptom is sensitivity to fluorescent lights and wireless devices (cellphones, wireless networks, ...). Exposure to this exacerbates all the symptoms, but also makes me incapable of focusing or remembering things long enough to have a thoughtful conversation, as I keep asking the person to repeat what they just said. Dr. K. believes the primary problem for me is mycoplasma pneumonia, rather than the normal strep. I have just last night started on clarithromycin (generic of brand name biaxin), 500mg twice per day, and he believes there is a good chance that will take care of it all. We will see. Michael

Started clarithromycin (generic of brand name biaxin) last night, for PANDAS that Dr. K. believes is caused by mycoplasma pneumonia. One 500mg pill last night before bed, another pill this morning--2 pills per day is the idea. Results were edgy during sleep-time last night and slight headache, more headache this morning, not so bad headache in late morning, but very severe hunger issues (as if blood sugar is now uncontrolled). Wondering if that can be yeast growing wildly, as I have had bad yeast issues and am still on 3 antifungals, it's my best guess, but wondering if that type of thing can happen with just the antibiotics fighting the bacteria. Also, maybe a bit more coughing and sneezing, as if the body is fighting something. Feeling pretty weak right now... Michael

Michael, So sorry to hear of your son's continuing struggles here. I don't have the information or experience to answer the question you've asked in terms of PEX and IVIG and antibiotics, but will make a suggestion anyway. Perhaps some things in the supplements category could help strengthen his immune system some. There are so many possibilities--selenium (as selenomethionine), vitamin B12, folic acid, vitamin B6 (p-5-p form), riboflavin, N-acetyl cysteine (NAC), alpha lipoic acid (great in combination with NAC), zinc, magnesium, SAMe (S-adenosyl methionine). Some of these are not that expensive and might make a difference, help whatever you do choose go a little better. I think sometimes the body gets warn down so much it's hard to fight off the bad guys even with the drugs that are supposed to help, and maybe a few of these items could help support whatever therapy you do choose. If you do try, I would recommend adding one at a time, in case there is a bad reaction. Michael

smarty-j, I'd say most of the time, if not all of the time, it is firmly in the "want" category. I heard recently that a survey of those with TS, asking if they would prefer to have TS or not, the results had more wanting to still have TS. That shocked me, and I can only guess there weren't too many PANDAS-TS included in that survey. But, the one thing I would be sad to lose is my particular appreciation for music, with really just loving songs with strong choruses, and repeating the last word in many verses--either before it is sung, after it is sung, or at the same time. It is so fun! How sad it would be to not be able to enjoy that! (But, no question, I would absolutely accept that deprivation in exchange for losing all the symptoms I currently believe are from PANDAS.) And that's all the same thing as wanting to repeat old jokes or lines from movies, appreciating Seinfeld where all they do is take one joke and do 10 different versions of it during the show, and somehow repeating mundane things from conversation gets swept in there. It's not quite as wonderfully fun (I might not feel tooooo sad about not doing that), but it still feels more like want than need. As far as, is it different, it does feel different in that it's more want and control versus have to. The worry that is difficult to control, the muscle spasms when they happen, or the eye-blinking (last two not very frequent these days), they are all no fun and not on purpose. I'm really very very light on actual tics these days, nobody would look at me as a TS person without me giving them extensive conversation on how you can look at it that way. Oh yes, my wife certainly notices the repeating, and it frequently drives her crazy. Michael

Jules, I forgot to mention, while the increased symptoms absolutely could be die-off, there are other possibilities. Maybe Chemar can fill in on Crohn's. I know she has said that with Crohn's (with it's overactive immune system?) probiotics can cause flare-up in Crohn's symptoms. Michael

Jules, Yes, you can have a die-off reaction when introducing probiotics and nystatin, or anything that can kill yeast. Curious what symptoms, though, as I think increase in yeast symptoms, not necessarily PANDAS symptoms, is what you get with those toxins. Personally, I am used to extreme hunger and digestive upset with the yeast die-off. But, the list of yeast and PANDAS symptoms have a lot of similarities, so that's just another aspect that makes it all so puzzling to figure out. If the die-off reaction is too much, you can consider decreasing dose, or suspending for a day or two, just taking it slower. Also, I take a teaspoon of psyllium husk powder in the morning, which is supposed to help with the detox of the dead yeast and reduce those die-off reactions. The leaky gut / yeast issue / food allergies, is a common combination, if you haven't heard, and treating the yeast and the food allergies simultaneously is best. If you just treat yeast, but keep eating allergic foods, you'll have the irritation that will feed the yeast and other digestive issues. If you just treat the food allergies, the yeast and leaky gut will just cause the food allergies again. It can be tough! I have been battling that one for a number of years now and finally with the anti-yeast drugs I am making real progress. Michael

bmom, ALA--I take 1 tablet at breakfast and 1 tablet at lunch. Each tablet has 600 mg ALA and 450 mcg biotin. It can be important to take biotin with ALA as ALA can use or deplete levels of biotin. NAC--I take 1 capsule at breakfast and 1 capsule at lunch. Each capsule has 600 mg of NAC. For what it's worth, if you're looking at dosages, I weigh 130 pounds. I really don't have much in the way of the motor/vocal tics these days, unless you're putting the incredible desire to repeat certain phrases over and over in the vocal tics category. I haven't noticed any reduction in that. But, what really got better was mood (happy/peppy) and energy level and immune system function. I observed these things both in terms of better mood, more energy, and less fighting cold-like symptoms in the morning (it gets pretty cold here overnight in Tampa, at least for those of us with very troubled immune systems). I also observed them in terms of needing less of a number of other supplements. It is now literally 15 supplements that I am either taking less of or have stopped altogether. My conclusion there is that these supplements are getting closer to the root of the problem than before. Michael

Kim--Thanks for posting the link to the study. I do suffer problems with the wireless/cellphone EMF's and fluorescent lights, and I believe some would classify those as ionizing radiation. I will hope to see it make some difference in my ability to withstand those things, though I have not noticed that yet. Must say, I didn't understand much else from the write-up. Do you know, is "saccharomyces cerevisiae" a good yeast or bad yeast? Was it saying it helps the body do okay but doesn't interfere with the fact that the radiation kills yeasts? Or was it saying the yeasts do okay with it too? Yes, perhaps the NAC will help the yeast somehow, I think that's what Gail was wondering, I guess anything is possible, though I haven't heard (unless this study is saying that). Stephanie--The recent presentation I saw emphasizing zinc so much was from a homeopath, and I really don't think she gave much in the way of reasons, and if I've heard one, I don't remember it. Michael

helpmyson, Oh, yes, sorry. NAET is not well known. It stands for Nambudripad Allergy Elimination Technique. The technique involves holding the "allergic" item during very specific acupuncture (certain points are used) and then avoiding the item for 25 hours following treatment. It is most commonly used for food allergies/sensitivities. But, I was thinking, for those looking at PANDAS as autoimmunity, a bad reaction to strep or other infection, why not treat the bacteria or whatever with NAET so your body stops "improperly fighting" that item. Michael

All good questions. I have a lot of respect for Dr. K., just starting on his recommended treatment plan. But, I would say, I'd be surprised if he was a pediatrician and a PANDAS expert AND a lyme expert. It's only so much a person can know about. Sounds like PANDAS and lyme are both situations where you really want an expert to deal with the situation. JT's mom, I'm getting some lyme tests on Monday, I chose the tests based on getting a basic panel plus an individual one related to the specific symptoms that match me (bartonella), and rickettsia (because an old biofeedback test showed sensitivity). I know it's tough to figure out how far to go when there are so many tests with real cost. lyme mom posted an excellent pdf in a different thread, and that pdf describes lyme symptoms, diagnosis, testing, treatment, and so on, including all the different related coinfections and what they can look like symptomwise. You might find it helpful in selecting what tests to do. Michael

Karen -- I have not been on antibiotics yet, but will be soon soon soon. It has taken some time from getting the CamK score in the PANDAS range to choosing a "PANDAS doctor" and now finally a treatment plan. In the meantime, it was clear that yeast infection was very important to treat in its own right, and certainly if the PANDAS treatment was to be antibiotics. So, the timing has worked well to get the yeast under control and now I believe I'll be able to handle antibiotics without the yeast going crazy (but we'll see soon). Dr. K. believes my PANDAS is from mycoplasma pneumonia and I just picked up a prescription for clarithromycin (generic of biaxin), which he chose because it is particularly good with mycoplasma pneumonia. I'm going to get some lyme blood tests on Monday, and don't want to mess them up, so will start the clarithromycin Monday night ... very excited to think there's a chance we might get there, it's been a tough time for many years! Gayle -- From the sources here and there I have heard things about NAC and antibiotics and fluconazole, I have never heard anything that would suggest mixing them would be a problem. There functions seem so different. The fluconazole is trying to kill yeast, the NAC is providing an ingredient for your body to make glutathione, which will be helpful in its antioxidant qualities. I have only a guess why your doctor might have suggested waiting for the NAC instead of right now, and it relates to the same idea in your post in another thread ... perhaps the doctor does not want to add another variable in the equation ... if there's improvement, "what was it from" will be the unanswered question, and having a true answer to that question does have value for treatment plans in the future. (And of course, doing everything you can right now to help the situation, also can have value, particularly when the situation gets desperate.) Michael