MichaelTampa

I had a recent phone consult with Dr. K., and he believes my PANDAS is from mycoplasma pneumonia. I will be starting on clarithromycin, probably on Monday. In the meantime, if the theory of this disease is auto-immunity from bad anti-bodies, I thought I'd try NAET to treat the "allergy" to the buggies. Finally gave this a try today. My NAET practitioner had 4 separate bacterias we tested. I tested okay for one (don't remember name), and bad for 3--one was mycoplasma pneumonia (tested worse for), one was strep (next to worst response), and the third I don't remember. All this testing was done at least single-blind, then she read the names off and results after we were done with them all. We treated just the mycoplasma pneumonia today. Since I'll be starting antibiotics in just a few days, not sure how much we'll be able to tell happened as a result of the NAET, but I thought I'd give it a try. Michael

About 10 days ago, started on some new supplements and they have made quite a difference. From the TS conference DVD's, I heard glutathione levels are very important in chronic conditions, and the combination of alpha lipoic acid and n-acetyl cysteine can help restore these levels. I had been taking the alpha lipoic acid (ALA) for a while, but added the n-acetyl cysteine (NAC). Dr. Martin Pall's book "Explaining Unexplained Illness" discusses a lot about the cycle of nitric oxide and when oxygen gets added and subtracted. It is an appropriate cycle, but when it gets heated up and happens too much, bad things happen and you have chronic diseases that are hard to get rid of, because it's hard to get out of the cycle. Seems pretty relevant for PANDAS, and he does include rheumatic fever as one of his chronic diseases he discusses. Okay, I also added an "oxygen" supplement (Oxygen Supreme, but there are many brands), and started taking Zinc in liquid form--only 6 mg instead of 25 mg tablet--as I heard Zinc is so important, and I do believe the liquid is more usable (particularly for those with digestive issues, such as myself), and a couple Xymogen products which are expensive--Immunotix (beta-glucans) and Xyrographis (anti-bacterial anti-viral ...)--both of these for immune system. This combination of things has helped a lot, and also reduced need for some of the other pills I have been taking. Not necessarily suggesting the whole combination, but for anyone looking for ideas, I think the ALA and NAC and oxygen and Zinc are good ones to consider for chronic conditions like PANDAS or TS. The same book mentioned above give good mention to Albert Donnay and his theory that carbon monoxide poisoning can cause a lot of chronic conditions and multiple sensory sensitivity. From Albert Donnay's suggestion, I have been on oxygen therapy (breathing equipment) for 2 hours a day for about 2 1/2 months now, and it has definitely helped sleep. While Martin Pall believe's carbon monoxide poisoning is but one of the possible causes for chronic conditions, I think his belief is, regardless of cause, it can be important to work on the nitric oxide cycle to get out of vicious cycle, and oxygen treatments and ALA/NAC can help do it. Not nearly done with the book, so there is probably more I have not gotten to yet. Well, a bit rambling here, hopefully it makes some sense, just wanted to pass on a few ideas that seem to have made a good bit of difference in a short period of time. Michael

Craig, I took the Candida Clear for a few months before running into Candex. I did add Candex in to the routine while continuing to take Candida Clear (though they were different times of the day, because of the nature of what they are). It turns out, though, when my one doctor went through all my supplements and did "muscle testing" (kinesiology testing) to determine how much of each to take and when and all that, she determined that my body would benefit from either one, but both of them was overkill, and priority for me at the time is Candex. I'm not sure how much to read into it. I have recently been taking 3 different antifungals and made real progress fighting the yeast, beyond what I could get from supplements. So, I am doubting those results have much applicability to anyone else in terms of needing to avoid taking them both at the same time, and are more of a sign of getting what I could from Candida Clear, and making a lot of progress with the antifungals. As far as any other issues with taking them, the Candida Clear tastes a little bad, but not terrible. No real problems with them. Michael

Fixit, The number for St. John Clark Pain Treatment Center in Clearwater Florida is 727-347-4327. They are the ones that developed this technique and have trained others. They tell me they are happy to refer out-of-towners to people local to them that they have trained. I would recommend calling them. If you're really more comfortable with me calling them, I'd do that for you, but if you're up to it, it's probably better if you call them yourself. You can talk about where exactly in Georgia, and it's also possible that your son's specific situation would lead them to recommend one practitioner versus another one. Michael

Forgot to mention, while I think/hope the PANDAS route will give relief with the biggest and most important symptoms, I am continuing the route of other structural improvements to the body, since the TMJ splint helped some. I am going to St. John Clark Pain Treatment Center in Clearwater Florida. It is a very unique approach to fixing spine and muscles and has helped quite a bit with some issues, TS-related and not--eyesight and spasms. While it can't be convenient for most, given the location, they have trained other practitioners across the country and beyond in their approach, and you can get a referral to a local doctor by calling them. Amazing place! I strongly recommend them (way over any chiropractor) to anyone looking for structural improvements, TS or not. Michael

For me, what it has done for me continues to be very stable, what it was just 1 week after I got the splint. It really reduces anxious/nervous tension, reduced heartrate by about 10-15 beats per minute. I had a bad cancer sore a month or so ago, it would not heal with the splint in my mouth because of the rubbing, and the increased anxious/nervous/heartrate symptoms all came back after a couple days, and then were reduced again after I finally got to put it back in. But, I still have a lot of serious TS-related issues, and it now looks like PANDAS, and I am pursuing that avenue at this time. Michael

lyme mom, I looked at the ilads.org site, and didn't see information on how to locate an ilads-trained doctor in my area. Did I miss it? Or is there a better way to find one? Leaning toward just the labcorp tests for now, but was hoping to have information on the igenex tests available for my doctor, based on how our discussion goes. I saw some information on the igenex site, but it looks like I need a doctor who will draw the blood? My MD does not draw blood for tests, just something they don't do. Perhaps another reason to find an ilads-trained doctor in the first place (if pursuing the tests)? Michael

lyme mom, On the topic of measuring EMF's, yes, I have measured the bedroom. Our bedroom isn't too bad, but does have the EMF's where the wires travel inside the walls to the electrical outlets. My sleep did improve when we moved the bed so my head is much further away from those things. By the way, the company lessemf (website lessemf.com) has a wide range of meters to measure the full variety of EMF's out there. It is a very complicated topic with many things out there to consider and measure, and speaking with them on the phone before purchasing is very helpful. They also sell shielding products as well. Michael

On the candida clear, I started with 3 per day (1 each meal), and as things got better, went down to 1 per day at breakfast. On the candex, I have been taking 2 per day, one in early AM and one at bedtime (candex is recommended away from food). BUT, I am an adult. Gosh, for a 7-year old, hopefully someone can suggest. Michael

Just want to add a few things: - Thanks so much to lyme mom for appearing and giving this information. It might be very timely for me, and with so many overlapping symptoms with PANDAS, seems like good general information for many of us to be aware of and look into. - Not sure if mentioned already in this thread, but for lyme, they seriously recommend against steroids unless absolutely necessary, to avoid permanent damage. So, it is worth seriously considering trying to rule out lyme before using steroids as a diagnostic for PANDAS. I know, after reading that, that's the direction I'll take if the antibiotics Dr. K. recommends don't pan out. - By the way, I did have lyme testing with labcorp recently, just forgot it was there. It was ELISA, it was negative, and according to lyme mom and the pdf attachment she provided in post 34 of this thread, does not rule out lyme. The attachment has a lot of detailed and basic information, appears to be very well-written, and looks like an excellent source of information. Michael

lyme mom & faith -- No, I have never had any testing for lyme. I have my local MD appointment tomorrow where he will be prescribing the clarithromycin (biaxin) for the mycoplasma pneumonia PANDAS (per Dr. K.'s recommendation). At this point, it looks worthwhile to get whatever lyme test would make sense--before taking any of the clarithromycin. Given what I have read above--that long-term, the lyme blood tests can show no antibodies because your body stops making them, and then after treatment, it comes back--it seems like showing low lyme antibodies, then taking clarithromycin, and showing high lyme antibodies later, that might be pretty indicative of a real situation to deal with (if it goes that way). Insurance coverage is nice, but I can afford to pay for the better ones if it's worthwhile, and sounds like it is. Any recommendations? Which or how many to do? Good ones and not-as-good ones? I'll go back on the web and see what I can find, but I'm also wondering, anything to take in conjunction with the clarithromycin? I remember from yesterday's reading that in some situations some combinations are used. If it's not too crazy (weighing risk-reward), my local MD has an aggressive let's-go-get-it style, and might think it makes sense to add something in, just in case. Michael

Bev, I've used flax oil for a number of years. My view is that any bottle labeling flax oil as nutty is just trying to make you think it tastes good. Of course, there are some with other things mixed in (cinnamon and so on, and perhaps some of those taste good, I haven't tried all the various kinds--there are many. I don't think it tastes pleasant (like olive oil or coconut oil), but it doesn't taste that bad. Cooking it will destroy a good bit of the benefits, so you don't really want to do that, nor would you add it to anything where you wanted it to taste really good. I have sometimes mixed it into other supplement drinks where the whole thing tasted weird, so why not just add one more weird thing. These days I just take it from the measuring spoon. My guess is, you mix it into yoghurt, it will modify the flavor just a little, not too much, yoghurt has a strong enough flavor and the oil taste is pretty mild. I'd suggest you give it a taste yourself (it won't kill you, most people it's something they could use) and then you'll better know what to do with it for your son. I must say I'm a little confused though ... you're looking at flax oil as an alternative to omega 3's he's been taking? What has he been taking that produced tics? Flax oil is predominantly omega 3, but does have some omega 6 and omega 9 as well. Michael

lyme mom, Interesting to hear about the EMF's. Fungus loves EMF's too, by the way. I get bad headaches and inability to concentrate and remember when exposed to the EMF's. I have treated for fungus and enormous improvement in a lot of symptoms, but no improvement in sensitivity to the EMF's. My worst problem these days are the wireless devices. Besides the cellphones, the wireless networks are starting to show up everywhere these days. Just recently was in Cedar Key for what turned out to be a one-day trip, literally could not find a hotel without a wireless network. Even the very small rinky dink cottages had them! Dr.K. is believes my PANDAS problem comes from mycoplasma pneumonia, and we are about to try clarithromycin for it. If that doesn't pan out, maybe I'll look at the lyme. It does seem the EMF's bother me more than most PANDAS patients. (Either that, or, they are kids and the parents haven't noticed the correlation, which is going to get harder to notice as the wireless devices spread further.) Fluorescent lights used to be my worst problem, and they are still just as bad, except that wireless usage has grown to be more of a problem. Have you ever noticed how the wireless affects your son? Michael

Fixit, I e-mailed him a history. He said he's happy to be a phone consultant with a local doctor of my own to do the prescribing, and he asked for certain tests to be done before the phone consult. That way, he knows what to recommend because he has the results he needs. So, my local MD prescribed blood tests. In my case, I was a new patient and he had plenty of other tests to do, and it all got done together. Then, Dr. K. recommends a treatment plan for me of biaxin, then maybe steroids, then maybe augmentin, but it is the local MD who will have to prescribe it. His general approach is like this, as you're not supposed to prescribe drugs from patients in a different state who you haven't met. All this works well if you have a local doctor who's willing to go along, so I haven't met Dr. K. at all. I've heard from someone else who did this that Dr. K. can communicate with that doctor if the local doctor has questions or whatever. I haven't yet given this treatment plan to my local doctor, but I'm sure he'll go along, as he has an aggressive style (meaning, let's go attack this problem) and these prescriptions aren't generally seen as that risky, certainly compared to a lot of other stuff out there. They took my insurance information and certainly did not promise anything. At $350 for a one hour phone call, I imagine a small amount will be covered. But this just happened, so I don't have a statement on that yet. Michael

Cheri, Thanks. Yes, I was actually on an incredible number of supplements, including Candida Clear, FOS, probiotics, digestive enzymes, coconut oil, saccharomyces boulardi, and Candex. After starting the nystatin, it just has been an incredible difference, and I have since added psyllium husk powder to help remove the dead yeast (doesn't kill it, just helps remove it). (Many other supplements, but those were the ones targeting candida issues.) One big difference for me is the sensitivity to fluorescent lights and wireless devices and perfumes. It is clear now from the back and forth I have seen, these things really help the yeast grow in me, so with continual exposure at work, this was limiting the improvement I could get from these natural treatments, and even limits the improvement from nystatin. Interesting, after concluding this, I did hear on the DVD's from the TS conference last year, there was a German study basically showing in a petri dish, bacteria will keep yeast in check, but when you add EMF's to the equation, then in 24 hours the petri dish has just yeast, no bacteria left, the yeast has killed it all. Michael

L's Mum, I took liquid prozac as an adult for what was being looked at as depression/anxiety at the time. I have since been diagnosed with TS and then PANDAS. The prozac made me what I would call bipolar, with incredibly quick mood swings caused by the smallest thing, which much more time spent on the down side than the up side. The fact that it was liquid may have contributed to this, as it was probably assimilated very quickly rather than through time release. It also caused about 20 negative side effects, including headaches, and generally was a pretty negative experience. This was with as little as 5 milligrams per day, even splitting the dose into twice per day. Michael

Faith, Yes, I did show somewhat high antibodies to mycoplasma pneumoniae. That, along with certain symptoms (he mentioned rage), made him believe my issue is myco-p rather than strep. Yes, he chose biaxin as the first antibiotic to try because he believes it is particularly good in getting rid of the myco-p, and yes, he believes find the right antibiotic, take it for a month, and I'm all fixed up and that's that. That sure would be something, huh? But, if the biaxin doesn't work right, he does recommend a steroid burst next to show that we are still going down the right road. On the chelation, I was just talking about the local doctor generally and the tools he has. Some of the natural MD's use chelation to get rid of the heavy metals. Some people think the sensitivity to fluorescent lights and EMF's generally is a sign of heavy metal poisoning. I did react with spasms to a drug with aluminum and, while my mercury levels look really low (I had worked on that), the aluminum levels look somewhat average to above average (60th percentile I think). The idea of chelation has been on my mind for years and I did try to get it a couple years ago, but the doctor I approached felt the test results showed I didn't need it. At this time, we'll probably just try the Dr.K. route here, but still keeping it in mind. Michael

mama2alex, I have not been to a DAN doctor yet. My local MD is an environmental physician, though, and probably has similar tools. He is open to chelation, we did the urine test to see kidney function first, which I believe is a standard test before you start chelation. Still waiting for results on that test. My memory and concentration issues really come in from the wireless and fluorescent lights, those are just some of many symptoms I get from them. I see the sensory sensitivities listed as PANDAS symptoms, and have heard some parents say these symptoms do resolve after treating PANDAS, so I am hoping that will be the case for me also. But, if it doesn't, chelation seems like an excellent choice. Really impressed with this guy, first visit was just a couple months ago, so going to give him a go for a little while before looking into a DAN doctor. Not sure how he'll feel about chelation while doing antibiotics, I have a feeling Dr. K. would suggest "no", Dr. K. very much likes the pure test of just the antibiotics, with nothing else messing it up. I am an actuary, work for an insurance company. Some actuaries do go the consulting route, mostly as part of a consulting firm, but some go it alone. Becoming an entrepreneuer would be a big shift for me personality-wise, but, I think the more pertinent point is that this role involves lots and lots of travel and visiting the clients and potential clients, and would actually be much worse in terms of these sensitivities. Thanks for your thoughts and suggestions, it does really seem like a tough one, but probably easiest to get some accomodations from a company I've worked at for 10 years, where they value me a good bit. (And a real cure would be nice, too, of course!) Michael

pure german here

Cheri, I just want to say, I tried the natural way with strict diet and a lot of these supplements, and it was helping a small amount but not enough, the improvement really topped off nowhere close to finishing the job. My situation did have circumstances that others may not have had, so not saying this would be how it would go for others. The nystatin with fluconazole has worked wonderfully, at least for a couple/few weeks. Not sure if it will finish the job, or if it has, or what problems. My body did eventually reject the fluconazole, but is still happy with nystatin. I had leaky gut and food sensitivities to almost everything and leaky gut. It is amazing how all this is quickly starting to get cleared up. I know with so many drugs, they can cause problems worse than the cure, but, with nystatin, I just haven't heard anything really bad about it yet. Have you experienced something or heard something bad about it? If so, I'd be curious to hear, very happy with what it's done but want to stay open-minded and also realistic on how long I should use it. Michael

There are some health-food-store items you can try. I'll just say, I struggled for easily 6 months or more with an incredibly strict anti-candida diet and many helper over-the-counter items, and had extremely slow improvement which eventually topped off. And then, antifungals for a couple weeks, and it's night and day. So, for some, like me, the improvement would be so minimal it's just not going to be much of an indicator. And then, for others, I hear these things work great. I know for me, some of the problem is I was being exposed to wireless and fluorescent lights at work, and these things just got the candida going, and so that made lasting progress impossible. I think with over-the-counter stuff, you'll need a very strict anti-candida diet, which I imagine can be difficult for the children. But, some here have made these modifications, maybe you have or can, I don't know. It is hard, even for adults. Can anyone say, are these modifications needed with the prescription antifungals like nystatin and fluconazole? I don't know, I have just maintained my strict diet because I am desperate and used to it by now. I hear the oregano oil is great stuff if your body can handle it. Mine can't. But, it won't be an indicator of yeast if things go well, because it is anti-everything, not just anti-fungal. NOW Candida Clear has caprylic acid and a few other items, and has helped me and Cheri's child as well. My experience is that Candex, by Pure Essence Labs is very good--just digestive enzymes, but ones meant to digest the yeast. Saccharomyces boulardi is a yeast meant to fight other yeast--I use Xymogen brand, but from what I hear Florastor is much more popular. Psyllium husk powder is great to help body remove dead yeast, but I don't expect it will kill them, so it's an adjunct. I weigh 130 pounds and take 1 teaspoon in the morning stirred into water. It is tasteless. There really is a lot out there. For some, strict diet and a few of these things really will work without antifungals. Not sure if that some is 10% or 90%, but I do know it wasn't enough for me. Michael

What can one say, at least it's not a new and shocking experience for me. Really, I'm healthier now than I have been in years, antifungals are giving me back a lot of energy and much better digestion. But, they have done nothing for sensitivity to fluorescent lights and wireless devices. With new installation in late October of wireless network devices at work, I was struggling mightily to get through the week and get a little work done, and barely recover by the end of the weekend. The level of microwaves from these devices increased without any reason known to me last week on Monday, and the result, after a few hours to a day of being there, is I basically can't think through an issue or have a conversation, really a pretty serious impairment on memory and concentration and that kind of stuff. But here I am, at home indefinitely, and feeling pretty good. I have asked for accomodations at work, such as shielding from the devices, there are other choices too. Really, the leadership role I have does require me to be in the building to do my job. So, with that a requirement of the job, I really am unable to do my job with my health as it is, and without accomodations. I had sought help from the national association for Tourette's (is it TSA, don't remember right now) for the perfumes months back, they truly were of no help at all. - it's the end of the world as we know it and I feel fine? - money for nothing and chicks for free? - you ever get high, Joel? Well, whatever phrase is right, it is a strange situation, indeed. On the serious side, had phone consult with Dr. K. He believes from my symptoms I really am a bit of a combination of pediatric onset and adolescent/adult-onset, but more on the adolescent/adult-onset side. He also believes it is mycoplasma pneumonia, not strep, for me (PANDAMP? PITAND-MP?). Yes, it's actually true, MP really are my initials... Blood test does show IgG for myco.pneu. in the "high (indeterminite)" range, and he considers that but is looking also at symptoms and history. He had a pretty positive outlook. Said to cut out the vitamin A, beta-carotene, selenium, and niacin, as they can increase cranial pressure, for a couple weeks, then start with trial of biaxin antibiotic for 2 weeks. If it works, finish 1 month and I'm healed. If it doesn't, use 5-day steroid burst to demonstrate inflammation, and then go to augmentin and be healed in 1 month. He says no analyzing this symptom here and this change there, if these things work, I will wake up and be a new person, it will be unbelievably obvious to me or anyone who knows me. I do definitely recommend going the route of one of the experienced PANDAS people, of which Dr. K. is one. Amazing to see the questions asked and conclusions made, it's obvious the experience really helps. Michael

This is really a tough one. Some sites list symptoms of candida that are so similar to the PANDAS symptoms. I am 42 and have PANDAS, and now that I am taking antifungals, before trying to treat with antibiotics, I am seeing how badly the candida has been affecting me all these years--perhaps since childhood. The GI doctor wants to feed me acid-blockers forever, but why is my body over-producing acid? Suddenly with treatment for yeast, the body stops over-producing acid, just like that, how about that? She even gave me endoscopy and colonoscopy, and I asked about candida, and she said I didn't have it, she would have seen it if I had it. The one thing I can say, don't trust a doctor to know. Really, sorry to say, but the easiest way to know, is to start taking antifungals. Nystatin has quite a reputation for being very safe, partly because it is not absorbed in the intestines. This strength means it also will only treat yeast in the digestive system. It might be a relatively safe first-step, particularly for someone with any kind of digestive issues--food sensitivities/allergies, stomach pain, indigestion, diarrhea, constipation, and so on. There are other antifungals that will get the whole thing. Sensitive to chemicals or smells. If you see genital itching, it's a clue also, but don't know if a child is going to have that. Books like "The Yeast Connection" have a full questionnaire and a long list of symptoms to look for. I really do think the yeast issue is not considered enough, reading the posts here. Perhaps it is the reason for some children why things don't get better with the antibiotics, perhaps not, but I do wonder. I have heard there are now blood tests for yeast infections. Perhaps they work well, but I would also consider if you trust the results will be looked at well. I remember wanting chelation, getting a test for the metals, and the doctor thinks I don't need it, the levels aren't too high. Then I take an acid-blocker with aluminum in it (omeprazole, generic of prilosec), and start getting spasms all throughout my body. Yeah, I'm sure nothing to do with having too much aluminum. Maybe he was reading it right for most people, but not for sensitive me. So I'd have the same concern regarding a yeast test for someone with PANDAS/TS symptoms. Michael

Not quite the same, but, when I have had episodes of getting a lot more wireless radiowave exposure, which I am very sensitive to, it has resulted in headaches and a lot of other symptoms like irritability and ADHD and indigestion and loose stool (that exposure always does that), but, during the day when the increased exposure started, there was also dizziness, a sign of yeast infection growing. Since then, I have started on antifungals that have made quite a difference, until re-exposed to yet higher levels of radiowaves. By the way, apparently a recent study shows that 24 hours of EMF exposure to a petri dish that is in balance with lots of bacteria and a little bit of fungus will result in the bacteria being completed destroyed and the petri dish taken over by the fungus. Michael

Faith, This is an integrative MD who is not an immunologist but knows a lot more about immunology than most MD's. His wife apparently is also an MD with quite a bit of immunology knowledge. He did quite a work-up, almost felt like an AIDS panel (to me, in terms of lots of things I've heard of), cytomeglavirus, epstein barr, mycoplasm, herpes, pylori, and so on. Given my health situation, he and I were both surprised how they were all negative. Michael