MichaelTampa

Jules, FYI, I have found that getting on the oxygen concentrator for 2 hours helps with a variety of issues of the day, some of them headaches which are likely yeast die-off. So, I do believe oxygen can help, whether hyperbaric or concentrator. For me, I think the antifungals and probiotics are helping a lot more, but I guess it's hard to say as I've been doing the oxygen daily from before I started antifungals. Don't know if you have access to it, but nystatin can be obtained in just the pure yellow powder. Likely more pleasant how I take it, compounded with no chemicals/colors/sweeteners, but with stevia to sweeten a little. Not sure if you have access to either of these methods, like you say, it does matter how it is prescribed. The fungus can be just so hard, and I was getting almost nowhere without the antifungals, even doing a lot of the "natural things". Plenty of people have had great success that way, but perhaps the fungi get so out of hand that the natural approaches just aren't enough. Before I went on abx, I was taking about 5,000,000 units of nystatin per day, which is a fairly large dose, along with some fluconazole ("diflucan") for systemic and ketoconazole nasal spray. Now, my last dose of 1 month of abx literally tonight, I am taking 11,000,000 units of nystatin per day, and taking about 30,000,000-40,000,000 probiotic bacteria every couple hours (10,000,000 of which saccharomyces bouldardi, I believe much less likely to be killed by abx). These large increases, just to keep things at the level they were at before starting abx. It's seems a lot like a situation where you look at doing as many different things that you can, and hope it is good enough. Incidentally, on the diet, I stopped eating grains about 10 days ago (not easy for a vegan), and that has also helped a bit. Grains are supposedly full of fungus related mycotoxins. I had already been eating no sugar and no fruits and no sweet vegetables... Hoping you can figure something out! Michael

I know the 10 years or however long it took for the ulcer guy to gain acceptance on his theory. But, I wonder if what is more unusual in that instance is that it resulted in a complete change in theory in a mere 10 years. I have heard meaningful discussions that generally the way theories change is that the current people in the field just eventually get old and die, and the newcomers will at least listen and consider. I don't remember any examples at the moment. That type of thing normally takes much longer than 10 years. Michael

Hi Michael, I am wondering, can you talk about your muscle spasm's? When do they happen and do you suspect why they happen? My 8 yr old has been getting muscle spasm's in her fingers, toes, hands, eye lids and under her nose the past few days and they are really bothering her. I'm wondering if it's PANDAS or a deficency of some sort. We don't see the doc until the end of this month. I don't know if they would be considered a tic or something else. So far, I have worried about tics but never saw anything develop more than a day here or a day there until these spams. Thanks, Susan The muscle spasms I get, when I get them, perhaps I'd say they can happen everywhere, but I think there are places more frequent than others--upper leg muscles a lot, lower leg muscles some, arms muscles some, chest muscles here and there, neck muscles occasionally, below the eye occasionally, and even sometimes the upper eyelid. The neck and below the eye spasms really, when they happen there, it's been more like for a week or so it really happens there a lot. Below the eye, the spot is 1 centimeter (a little less than half an inch) below the lower eyelid, and the spasms is a left-to-right motion, that one just drives me crazy. So did the upper eyelid one, which was also left-to-right motion. The other places, it jumps here and there. Again, I haven't had any of these too much in the last month or so. Except for the eye/neck ones, when they happened, it would be a few spasms on the leg, then nothing for an hour or so, then a few on the other leg or the arm, and so on. I can't say I remember the spasms happening much in the hands/fingers/feet/toes/nose. Many months back, when I was taking carafate for digestive issues, they really went crazy, it was totally out of hand, until I toned down how much I was taking and eventually stopped it. Carafate has aluminum as part of the active ingredient, and I was assuming that is what caused it, but of course it is impossible to know. My mineral analyses have consistently shown aluminum as above 50th percentile, not whopping terrible, but a bigger issue than some other heavy metals such as mercury (if you use the percentiles as a good judge of how important the issue is for you, and perhaps that's just speculation). Just recently, I ran into the comment that magnesium deficiency is a likely cause of muscle spasms. My magnesium doses have changed over time for various reasons, and it is possible that has played a role for me too, but, I have not really tracked the spasms in relation to magnesium intake, so, I don't really know about that as far as my situation is concerned. Hope that helps. Not sure quite what information you were looking for, let me know if you had any specific questions. It can be difficult tracking down what's causing what. Michael

Gat's Mom, Just reading this thread, I thought I should update you with my memory of how my cough has gone through the biaxin treatment. The cough did come up roughly a week in to treatment. If you asked me today, I'd guess it occurred days 5, 6, and 7, but time has a way of making those things hard to remember, so whatever I might have said previously is likely more accurate. But, pretty sure it lasted a few days. For each day, it was definitely more in the morning, the hour or so after getting up, but did appear at other "random" time throughout the day. Though couldn't get doctor to comment, I very much believe this is part of the healing process, something like the couple ideas presented earlier in the thread. A day or two afer this cough went away, my body energy tested for not wanting the biaxin anymore. I have continued to take it, but the point is, this is a bit consistent with something good having happened there. I did have another day or two of similar coughing somewhere near the end of week 3 (days 18-19 perhaps?), and again, this period was preceded by testing good for the drug, and afterward, I am now back to not testing good for the drug. I am pretty sure I will stop after day 28, this coming Sunday/Monday, but the cycling like this makes it an interesting guess of when you're really "done". I have read the ILADS guide that lyme mom posted a while back, and all the drug treatments. Since I was being prescribed biaxin, I remember what it said about it, and it said it was used sometimes, but was not really the drug of choice. On the lyme topic, the bartonella coinfection symptoms are the ones that look most like PANDAS to me, and I remember the best drug for that is not given to children (on my list of things to do, to research why that is, even though I'm not a child, it seems like there might be more reason for caution, just like they used to suggest not giving fish poisoned with mercury to children and pregnant women, but really, mercury isn't so good for everyone else either...). Rant/whine comging: I am still waiting lyme results, very frustrated at this point, getting ready to shift antibiotics, seems like it would be great to consider that information, the results were provided to my doctor last week Wednesday, and here I am 8 days later not knowing anything, because of the rule the doctor has of not giving results to patients until they are discussed. As I told the assistant there, that's fine, but then let's get on with it and discuss it, earlier appointment or call me or something, but waiting 2.5 weeks for an appointment on these results is making me crazy. (Sure, I'm comfortable here at home avoiding the wireless stuff and fluorescent stuff at work, but I have a set time period of 6 months to return to work before losing my job, clock has been ticking for over a month now...). Michael

I have heard this can be an issue with Parkinson's, so a number of neuro conditions seem to have this. I have this as well, about 20 times a day. In my case, nothing to do with OCD, simply gotta go. There was a thread a while back, working on a long list of PANDAS symptoms, and some parents were reporting that frequent bathroom trips were related to OCD, so, apparently that can happen to. Goodness, every 10 minutes--makes my 20 times a day sound not too bad--yikes! Michael

It is acupuncture. They have the energies of various foods, other substances, emotions, and so on, magically stuck in various vials. If you muscle test bad for it, they reset your immune system by applying acupressure along the spine, and then give 8 needles, 2 in each hand/foot area. The needles stay in while you hold the vial. After 20 minutes or however long the particular practitioner has you wait, they take the needles back, take back the vial, you're supposed to avoid the substance for 25 hours, and then the allergy is supposedly permanently gone. Michael

I have always been attracted to yellow, it is by far my favorite color. I get excited whenever I see anyone wearing yellow, particularly with black. There are theories on color therapy, that yellow is good for digestion (I've always had digestive issues), that it relates to chakras and emotions. I think for control issues is one of the chakra/emotion ones, but don't have that information in front of me. When I went to try Irlen lenses for help with light sensitivity, I did test best for yellow. Some of the supplements that are the most important for me are yellow--CoQ10, alpha lipoic acid, SAMe, vitamin B2, and vitamin B6. And yes, I put turmeric in a lot of dishes that others would not, and test very strong for it, and am considering trying the Enhansa discussed earlier. Anyway, so, just curious how much any of this might be in common with PANDAS, or not. I'd enjoy having others post the favorite color for the PANDAS people in their family, and, if there are any, add any other interesting tidbits related to that which seem interesting or relevant. Michael

I have been taking clarithromycin (generic of biaxin) for mycoplasma. Nice but not wonderful results to this point, at day 20. Haven't heard of minocycline. Do you know more about it, how it got selected for you? Michael

Lilyma, FYI, acetyl-l-carnitine is recommended in a book by Doug Kaufmann as being helpful for weight loss. It states that acetyl-l-carnitine moves fat into the mitochondria of the cells, where it can be burned for energy. Doug Kaufmann has made a bit of a name for himself blaming pretty much every illness there is on fungal infections, and explaining the benefits of various therapies in terms of their antifungal properties. My sense at the moment is he's a bit overboard with some of his speculations, but probably at least generally on to something. Michael

Cheri, I like the idea of hydrogen peroxide. Could you share how much you dilute it--how much hydrogen peroxide to how much water--and how frequently you change the mix? Thanks. Michael

Regarding the steroids and lyme, lymemom has posted that steroids can cause permanent damage for those with lyme, so you may want to consider getting a lyme diagnosis prior to trying steroids. The ILADS lyme guide she posted, I'm not sure if it said it that strongly, but I think it said something like "steroids are absolutely contraindicated in cases of lyme". All this can be tough, trying to factor into how long to wait, how much money to spend on all these various possibilities (lyme tests and doctors will take time and can be expensive), how careful to be, how urgent you need some relief, and so on. Michael

I think it's great that you all are taking it upon yourselves to consider other possibilities. Just a word of caution, a tricky part to keep in mind is trying to figure out what the causes are and what the symptoms are. For example, what if the thyroid is a problem. Is that a symptom caused by the various aspects of PANDAS? Is it really the root cause of the symptoms that earned the PANDAS diagnosis? I'm not trying to answer the question in you case, it is tricky of course and you hope the doctors can help sort it all out, but just reminding you of the puzzle. Michael

Yes, they are very interrelated, and it is a shame that so many doctors ignore that. It is a real shame, and part of the general larger shame of what has happened with all the specialization, doctors become experts in one field, and then see all problems through those glasses. - I have been to a regular psychiatrist, and she feels all my problems are chemical/emotional and I need psychiatric drugs. - I have been to a psychiatrist who specializes in TS, and he feels all my problems are from Tourette's, and I need TS drugs. - I have been to a psychologist, and she feels my problems are emotional and I need counseling/therapy. - I have been to a chiropractor who believed he could fix my problems by pulling and cracking my bones and so on. - I have consulted with a PANDAS expert who believes my problems can be fixed with antibiotics for mycoplasma/strep. - If you read/listen to Doug Kaufmann, he would suggest the first step to addressing my problems would be antifungals and antifungal diet. - I have been to a naturopath who sees a lot of people for leaky gut syndrome and believes my problems are caused by that (food allergies/candida). - I have been to two dentists who believe my symptoms are from improper jaw location and other TMJ related issues. - I have been to an acupuncturist who believed she could fix my problems with acupuncture, diet changes, and supplements. - I have been to an NAET acupuncturist who believed he could fix my problems with NAET acupuncture. Unfortunately I could go on and on, seriously, and the one thing most notable is that most of these health care providers took only a cursory look at the other possibilities. Some of it is that literally they lack the knowledge and resources to do much more than that. But some of it really is just closed-mindedness, and I guess those reasons somewhat go hand in hand, chicken-and-egg if you will. And of course, to be fair, it's got to be hard to be a specialist and know enough about all the other possibilities to really consider them well. So, I think it is really our job as patients (or parents of patients as the case may be) to learn what options are out there, and make sure the other options are explored at the appropriate time (before letting the problem persists too long, before trying a really dangerous treatment based on one theory, ...). Michael

Very interesting. I have results for my lyme western blot coming literally any day now, so will let you know when I get it. Perhaps one of the many Lyme coinfections? Apparently Bartonella can lead to rage attacks which are seen in some PANDAS cases. Do you use IGeneX or some other lab for the testing? I have heard that IGeneX is much better than more standard national labs. Michael

Unless you're having this problem with other pills, it sounds to me like your body is sensitive or allergic to whatever coating is on the pill or capsule. I say that because it is coming out whole. If it got digested and you had the reaction, then perhaps it would be the ALA or any additive. But, since it is coming out whole and you are having the problem, it sounds to me more like it is not the ALA itself. You might consider trying another brand. Certainly, some brands are better than others. I have never heard of MRM, so cannot comment on them in any way. But, some people are just sensitive to certain ingredients/additives, and if you are sensitive to what they are using, and another brand doesn't use it, that wouldn't necessarily say much about MRM, it may simply be a bad match for your body. I am pretty sensitive to additives, and have seen myself do very well with some brands, and then other brands nothing was good for me. Michael

Gat's mom--good to hear you're seeing some good signs! Looks like we're on similar tracks in a number of ways here. About the pill swallowing, that is something I haven't been able to do since a small child. When I swallow, the tube or whatever really gets smaller that things won't go down it unless it is really small. And, I can't even relax it to let anything down without biting/chewing for a while. I think some people call that the bite reflex. (Actually, after getting a device from Dr. Sims for TMJ/Tourette's, there was a period of a couple weeks where I was able to swallow whole some extremely small pills, but even then I did need to bite down on it and, if it didn't break, then it was still whole and I could sometimes swallow it. That resulted from being quite a bit more relaxed. Over time, going back to work following that got me more stressed and busy, and it got harder and I kind stopped trying.) I'm just used to opening up capsules and chewing pills and getting all the crazy tastes, but drugs are always trickier, as they are sometimes made with special stuff, like that time release. Michael

Thank you all for your input here. I met with my local prescribing doctor today (different person than the PANDAS advisor we're using), and we decided to go ahead and finish the 28 days. He says 3-4 weeks is generally the time he hears being used for antibiotics, to make sure they've really taken care of something. This is general information and not at all specific to PANDAS. So, given this, and that I really have seen some improvement, and exactly the concern jewels mentions (not wanting to leave just a few bacteria left and let them grow back to tougher/meaner ones), we are going to finish the 28 days, then reassess, and by then lyme test results will be in to add more information. He also took a biopsy today of something on my chest that I thought of as a mysterious bug bit, which I have had come and go sporadically for at least a couple/few years (perhaps longer). I call them mysterious, because of how they arrive, for example, this one, I'm feeling fine, sitting on the couch inside, well clothed, shirt and sweatshirt as well as other clothes, and all of a sudden it is terribly itchy there, looks like a bug bite (smaller than from mosquito), and it's not like there were any bugs visibly flying around that might have done it. He said it looked like a "insert lots of big fancy words here", meaning not too much to worry about, but a lesion not at all from a bug. But, given the various puzzling aspects of my situation in general, he took it out and sent it off to see if we might learn something, anything, as things aren't always what they look like. My plan really had been to take a break from antibiotics after the 28 days, because of the yeast/fungus issues. At the beginning of the biaxin, I had a horrible yeast/fungus issue. I have been dealing with a serious yeast/fungus issue for years, it is obvious now, but addressing it with 3 antifungals for a couple months, and with a lot of progress. So the yeast/fungus outburst with the introduction of antibiotics surprised me, indicating there is still much to be done there. It has stabilized during the antibiotics, but only with me taking 15 or so pills of probiotics every couple hours while awake, and once or twice in the middle of the night. Quite a grind! That's why I am eager to be done with antibiotics and take a break and get even more serious with the yeast/fungus in order to avoid going through this again. If I get to it, I think the augmentin will be interesting. I can't swallow pills, and I see it does come in an oral suspension, but I'm sure the time release part will be gone there. Perhaps I'll just be spreading the doses out throughout the day, must say it's good I'm not trying to work these days, with all the time spent on pill-taking. Goodness, given MomwithOCDson's and Vickie’s posts, it looks like a real thing to assess after the month whether to keep going with the biaxin. Not wanting to quit too soon, but not wanting to waste all this time when there are clearly other things to try and address. Of course, that experience is kids, where the long-term antibiotics are sometimes used, and maybe the reason that is needed for some is the same reason it takes longer for some. Quite a puzzle sometimes. Michael

Hi there, After 14 days on biaxin based on the theory of things looking a bit more mycoplasma pneumonia related (as opposed to strep), I had two periods of really nice relief of less anxious and happier and brain area did feel less pressure. One period lasted a couple hours, and ended when I got a fluorescent light and wireless exposure. The other began after NAET treatment and ended an hour later while still in traffic. Anyway, I am being advised now to try augmentin 875mg, presumably in case it is strep. 1. I do want to take the two really nice periods, and other signs of general better health and less supplements needed, that the biaxin is really helping with something, and want to take it as long as might be needed to kill all of those bad guys, so to speak. The original plan was that if great relief was found, to take it for a full month. Does a full month sound like the right time to be sure we've got it all? Is that a typical time period (for those not just using prophalactic long-term)? 2. Could someone remind me on the augmentin, the internet says it has amoxicillan and clavulanic acid. Is this one for strep? I remember one strep med being thought of as better because it had another ingredient that helped the strep not avoid the antibiotic part of the med, or something like that... Is this augmentin, with clavulanic acid being that other helper second part? I don't see azithromycin having any second type part, at least from what I read on the internet. I'm thinking that's the other one used for strep. Just trying to get some basic understanding of the strep drug choices, and trying to understand why this one might be chosen. Thanks for your help. Michael

The interesting thing about your question to me is, it reminds me of how being sensitive to these things as I have been for so many years puts me out of touch in how these things actually work, in that I've been avoiding them. What devices are involved in your setup? If it's just computers and the wireless router, then I think you'll have it covered when you address them. I'd want to make sure the wireless router wasn't sending out any signals. If it has no power, it can't do that, so sounds like that'll work as long it doesn't also have a backup battery. Computers set up for wireless also send out signals if they are left on, unless you flip the switch telling it to not do wireless. Are you using one of these hookups from a phone line or cable line? Is there a connection from those lines to the wireless router, or is the router the connection? That's where, never having seen one, I don't know, but if there is a third piece in the setup, you might want to disconnect it, or find out (from a knowledgeable source or from a meter) that it is harmless. Michael

Faith, Yes, it is a bit of a complicated topic to get into. EMF's as a general term, relate to what comes from any electrical device. If your house is wired with A/C (which basically everyone's is, unless they've had it very specially built), you can turn off all the lights and even unplug every device from the wall, and there will still be EMF's spewing out from the wiring leading to all the outlets. This A/C (alternating current) works very hard, going back and forth, trying to be always ready for you. But, it does increase when you turn stuff on. And, more electricity flows, and more EMF's generated, just by having things plugged in, even if turned off. That's all EMF's generally. But, in the wireless category, EMF's of a specific range of frequencies, are called microwaves and are used to cook food or communicate using cellphones or wireless computers. For some magic reason known only to the people who make laws and buy goods, it is important that microwaves not leak because they can seriously harm you. But, magically, when used for communication, they are perfectly safe, absolutely no problem at all. Anyhow, from my measuring device, some cellphones, when on, are constantly emitting microwaves, like they are constantly sending communication. Others seem not to. I can see needing to receive communication (to know if call is coming), but that doesn't require sending microwaves. Computers set for wireless will have a switch or button to turn it off or on, and when it's on, it is always sending microwaves when the computer is on. I learned this the hard way before I was sure microwaves were a problem for me, and my company gave me a new laptop to replace the older one. It took a while of discussing with others to figure out what was causing all the headaches, but the solution was easy to turn the switch off and keep it there. Cellphones and wireless computers are the most commonly discussed items. But there are lots of other devices, like security systems, bug-killing devices, a few others mentioned in this thread I believe, people continue to be creative in using these things. You really have to kind of think about what technology you have and how it could do its job without SENDING communication through the air. Satellite dishes are no problem, because they are just RECEIVING wireless, and then normally hooked into the home/TV via cables. Of course, the other reality is, you get them here and there when you drive by the street. There are some cities like this, no matter where you are, you've got it. And if you have a neighbor, particularly if you live in an apartment, using wireless, particularly a computer network which even for individuals is getting more popular, then you can get it just because you're close. That's the beauty and problem of these things--they don't have boundaries, they just travel. There is always shielding in these cases. To really know what you're getting, what you have, you can buy a measuring device, I got mine at lessemf.com, they are great to speak to over the phone, to help through so many choices and confusion. A first step might be just to try shutting down the obvious items in your own home and seeing what happens. Michael

I used to take it with 5HTP with breakfast and lunch, but 30-60 minutes before the meal, to help with absorption, as taking amino acids with a meal means it will compete for absorption with other proteins. That's one of the supplements I stopped needing about a week ago. But, honestly, I was still reacting to it, it just wasn't helpful. When I needed it, it turned me from anxious/depressed to less so. Now when I don't need it, it was turning me loopy. Michael

Chemar, From your comments on the fluorescents, I assume you've probably heard the Clean Energy Act passed a few years ago does outlaw sale of incandescent bulbs as of January 2012. There are very limited exceptions, like for refrigerators and hard-hats for minors and extremely tiny decorative lighting (such as might be used for christmas trees). LED is still available, but very expensive up front, although will pay for itself in the long-run as even cheaper than fluorescents (even ignoring health care costs). There is always hope it will get overturned, there was one member of congress I saw a while back trying to overturn it... Michael

FYI, I didn't find anything on her site regarding HDTV, and I have a difficult time seeing how that would matter as far as this stuff is concerned, unless the TV is giving off more EMF's because there are more little bits of picture? I don't have HDTV or any real experience with it, so don't know how it affects me, but TV as a whole has never been anything I've noticed as having an affect on me, whereas wireless and fluorescent lights are terrible for me. Michael

Pat, My treatments for the emotion vials were several years ago, and I really don't remember which ones they were. But, I really didn't notice any results from those treatments. I mentioned this idea to my current NAET person, and she said she actually has a different approach (not NAET) that she prefers to use on emotions, something Japanese, and something about connecting left arm with right leg and right arm with left leg, and the things that connect the meridians together. On trying the emotion vials with your son, seems like it's worth a try. A lot of the trick with NAET seems to be getting at the root cause, and then fixing up the edges that were messed up because the root was messed up. Perhaps OCD and then emotions is what it is for him. Hard to know, I think. I also like to do the ones that you test really really weak for, taking that as a clue of importance as well. Michael

A couple ideas: 1 - I went to an outpatient center that I had been treated at. They probably remembered me, but probably would have done it anyway. I told them it was for a research study on Tourette's and infectious diseases and how they relate. When they heard that, they really wanted to help. In places like that, because of EMF's, I also wear a black fedora hat and yellow sunglasses and perhaps that makes me look a little bit more like someone they would want to help. They spun it and everything, no charge. Didn't even have a doctor's prescription. 2 - Granite Labs does blood draws in my area for $15. Their typical business is to send to Quest or LabCorp, but I'm sure they would do it, but would need a doctor's prescription. They may be in your area as well. Michael