MichaelTampa

Welcome harpazo, I had been working the pandas angle for a while, and just began lyme treatment in earnest 4 days ago, IV antibiotics and tindamax. Your description of the repeating statements when excited kind of thing, I do that sometimes, probably not as much as you are describing for your son, but certainly enough to drive my wife crazy. I have been using an infrared sauna and rife machine for a couple/few weeks. Not familiar with ozone sauna. The infrared sauna is quite helpful, bought it for $350, much better than driving somewhere to pay $35 per use. The rife machine is also useful. But, I am very sensitive to EMF's, and of course, the rife machine makes them. That used to really limit the amount of time I could use the machine, and limit its usefulness. I got some devices from Gia Wellness to reduce EMF sensitivity, and while my sensitivities are not gone by any means, they are reduced enough that my body can stand the rife machine long enough to do some real good. The one I got was $600, from rifemachinebuilder.com, don't know the model name. I know there are many that are better, but many cost $2,000-$3,000, and wanted to just get started and try it out at least. I'm happy enough with it. It does not allow any frequencies to be preprogrammed or anything like that, just set the frequency, turn it on, then change the frequency whenever you want (either leaving it on or turning it off to do that). From all my reading, the lyme can be very difficult to get rid of, so it's a matter of doing all the different things you can. My doc is also looking into IVIG for me. We did a strep pneumonia vaccination to see if my body builds IgG antibodies to strep pneumonia. If not, he feels this will demonstrate immune problem enough that insurance will cover, which is critical as it is so expensive. Michael

fiveam, Sorry to anyone on this board that may be sick of hearing about lyme, but must say, from my perspective, as I read about lyme, I hear about drooping eyelids as a lyme symptom, can't remember hearing of it as a PANDAS symptom. I know sensitivity to sunlight is also a lyme symptom, but imagine it is PANDAS too, as I think they both come with a variety of sensory sensitivities. Just hoping you have lyme on your radar as a possibility, unless you have done a good job to rule it out... Michael

Alder, I was diagnosed as adult pandas last year, and got some relief with antibiotics. The relief was very significant, and yet probably removed only 10% of my problem. My experience, and yours too, sounds like one where infection related stuff is causing neurological/psychiatric issues. Many with lyme disease have PANDAS. Lyme disease can weaken one so much that you get all sorts of other things--strep, pneumonia, various viruses, fungus, and so on. I did pursue lyme and now am about to start treatment on that. It looks very much like the pandas was just the tip of the iceberg. I do suggest you consider looking into a possible lyme diagnosis. There are various threads on here you can search to read all about that, for lots of details. But, the short info is, you can't just go on the fact that some doctor does some test and says you don't have lyme disease. There is much lack of knowledge, so, anyone that wants to seriously consider it has to find someone truly knowledgable, such as an ILADS trained doctor. There are various blood tests, many are not that good, none are reliable, and while tests can help with the diagnosis, it is really a clinical diagnosis more than anything test related. Michael

I know back when I did it, late last year, I asked if sending a check was fine, she said it was, and that's what I did. Back then, the payment was lower, and not required, and it is possible some things have changed. So, not sure how it works now, but last year, a check was fine. Michael

Just want to chime in with a few comments here. On the muscle testing, reading the Insights into Lyme Disease Treatment, yes, even some doctors now use muscle testing or energy testing or kinesiology, whatever you want to call it, to help with diagnosis. I have an NAET practitioner, they have vials for everything, including lyme and various coinfections, and antibodies to lyme as well. I always got a positive response from treating these, which we wouldn't have done if they didn't test as "allergic". Bartonella worse than lyme (borrelia), lyme worse than mycoplasma pneumonia, myco-p worse than strep. It gives a real clue for what is going on. So much faster and cheaper than all those blood tests and, in my opinion, at least as reliable. Given the reliability of the blood tests, these just seem more valuable. Also, the CD57 test, must go to labcorp blood draw, can be good diagnostic tool as well when whatever the problem/infection is has been around for a long time, too low is likely from borrelia, but I also have heard for children the test is not worthwhile. So, maybe for adults. I just had this test a couple weeks ago and the results came back in 1 or 2 days, not sure the costs, it was a specialty test from a different company that labcorp purchased. Really, my recommendation for those struggling with diagnosis and treatment of PANDAS/lyme/other neurological issues, as they all look so much the same, is consider a quick NAET-style muscle test if you can do it quickly, but really, waste your time with tests only as much as you need to in order to get a serious ILADS doctor to do an evaluation. Where I live, the ILADS doctor requires a referral, which means convincing a primary MD that the situation is worth referring to him, so my tests were important to get that going. But without that requirement, the waiting for tests can be just a waste of time and money. Finally had my ILADS MD first visit yesterday, gearing up to treat lyme, a few more tests as he is a little suspicious of other things, why negative IGG on all these viruses that 70% of 42 year olds would have (body not making immunoglobulin, would IVIG be helpful?), what is that body odor telling us about what other infection I possibly have, what is that white stuff inside my nose that doesn't look like it's from allergies, so on, so forth, so, a few more investigations and tests, but gearing up for some serious hard-core treatment. Wish he had done some hormone tests, as I read that can be very important for lyme, and going to ask my primary MD tomorrw if he will do that. You will note some similarities in treatment with PANDAS, even the consideration of IVIG, it comes down to some infection and immune problem, and an ILADS MD in the Infectious Disease treatment specialty seems very well placed to investigate and treat whatever it is with all the tools. Some symptoms that have already lessened a lot from herbal lyme treatments are itchy skin and funny creepy-crawly feelings about 1 inch under my skin. Never considered the itchy skin as a symptom, just a nuisance, as so many more significant/painful things were going on. But, in retrospect, see that as quite a clue. Don't see itchy skin listed a lot as a lyme or PANDAS symptom, but thought I'd just point it out. The creepy-crawly feelings do sometimes make me jerk my legs, yet could still be different than a TS type movement, in that I don't have to do it, but it just feels so uncomfortable and it helps to move it. Sorry, that probably makes no sense, very difficult to find the right words to describe that. Personally, very busy gearing up for new treatments, including new supplement and home treatment regimen, have not been here a lot, likely will not have as much time going forward. Kind of miss you guys and wish you all the best, and very thankful for all the help, not saying goodbye, I'll stop in here and there, but really focusing on lyme and just very busy from it. If anyone has questions/comments they are really hoping I see, PM will be the way to go, will be happy to respond. Michael

I also had frequent bloody noses as a child. They went away very roughly around age 18, without any treatment for the PANDAS or lyme or whatever it is, although they have popped back up here and there infrequently in adulthood. Michael

The Personal Oxygen Bar...as this is called....does not rquire a persericpoin....i don't know how much it puts out per miinute...but there are no refills??? it somehow regenerates it out of the aire itself????..i'lll try to figure it out sometime....it's $598 I see a couple things on the internet with that name. The ones I see provide maybe 40% oxygen, a bit below the 93% provided by oxygen concentrators I am familiar with. Perhaps that is why no prescription is required. One said it provided 3 liters per minute flow rate. These work by taking the oxygen out of the air and concentrating it, so there really is nothing to refill. Michael

One connection I have heard of recently, talking with my doctor and reading book, would be lyme. Apparently those with lyme can have various other infections beyond the ones typically considered "lyme coinfections". Some of these are strep, mycoplasma pneumonia, and there is quite a list of viruses, and Epstein Barr is high on that virus list. There could be other connections of course, just mentioning the one that comes to my mind as I read the question, and my mind is very much on lyme these days as I continue to research my own condition here. If the EBV is hard to get rid of, perhaps it could simply be the autoimmunity triggers that some people get with strep. Michael

I am feeling the need to add just a little bit more information, in case someone here ends up actually deciding to rent or purchase an oxygen concentrator. The protocol I was using involved using a machine that was set to produce 5 liters of oxygen per minute. Most users of oxygen do not need this much, and use more in the range of 1-2 liters per minute. Because of this, most oxygen concentrators only produce something like 1-2 liters per minute, and can't do the 5 liters per minute protocol. Anyone getting oxygen needs a prescription (at least in the US), and so you will be discussing this with your doctor, but, for the record, I was using 5 liters per minute. This recommendation actually came from the protocol for treating chronic fatigue syndrome through carbon monoxide poisoning. This is a guy who sees carbon monoxide poisoning in every person with symptoms that look a little bit like that, including chronic fatigue. That said, from subsequent reading, I do feel that it is excellent treatment for chronic fatigue and also for PTSD, but do believe bacterial infections can result in the same need, particularly long-term infections. It's not just for carbon monoxide poisoning anymore. Michael

For a while I was renting for $170 per month, I'm sure that varies by location. I just purchased one for $530 used delivered from somewhere out of state. I'm sure there are some a little cheaper and a little more expensive. They do use up some electricity. Used is not only cheaper but also will have less offgassing of plastics. Michael

I want to chime in a little more with my experience on an oxygen concentrator. This works by breathing in from a mask or tube which is connected to a machine. It is about 93% pure oxygen this way. Something similar is breathing that way from an oxygen tank of 100% pure oxygen. I was a little scared by that, so went the concentrator route. I expect this is really a very similar idea, but not as powerful. If one is concerned about getting worse before better kind of thing, maybe that is the way to go, it is gentler. I started using it a couple months before antibiotics, would use it for 2 hours generally before bedtime. Most nights, I was a little lightheaded and tired and fuzzy afterwards as I headed to bed following the treatment. A gentle herx? I don't know, maybe. The thing I noticed most immediately as a benefit was it helped me sleep better. When I started antibiotics, about days 3-5, I noticed in my left foot having some pulsing pains here and there. My left foot has had pulsing pains for a few years, off an on, various things would correlate with the pain, sometimes so severe and sudden people would think I was having a heart attack, sometimes gentle and dull and not too big of a deal. I could talk or write for hours trying to describe it, but let me say it has been a big mystery for many doctors. No pain in the foot since those days. I am still on antibiotics, and I still occasionally feel some squirrelly feelings under my skin during the oxygen treatment, often in arms and legs. We are all free to interpret, but there is no doubt in my mind that this is an example of the oxygen treatment really interacting with the antibiotics in a good way, as Sheila was mentioning above. I do want to point out, though, there was plenty of benefit even before I was on antibiotics. Michael

Just ran across this article somewhere else... http://www.iaomt.org/news/archive.asp?intReleaseID=321 They have measured mercury in high fructose corn syrup, and believe it is coming from machinery used to process it, same machinery also used for citric acid and sodium benzoate... If one is sensitive to these products, could be the product itself, or could be the mercury. Michael

Regarding the idea of getting Dr. K. to write the script ... I'm not sure that's going to work so well. I have him as my consultant, but he wants a local doctor doing the Rx, and I would also assume the lab scripts, though I never asked him because I already had a cooperating doctor. In the end, you're going to need a local doctor willing to cooperate, so you might as well start looking (or alternatively you could use Dr. K., but will be traveling to see him as frequently as deemed appropriate). So many of us here have to go hunting for doctors, it's a shame, but it is the reality. Michael

My impression is that band 41 is a bit on the controversial side. Some lyme doctors will treat as lyme with just a band 41 positive if lyme symptoms are there. I googled it recently, one doctor reports 97% of patients improve when he does that, so he does it. For all these patients, maybe it is lyme, maybe it isn't, maybe it's just something else that gets helped by the lyme treatments. The key is if the symptoms are there or not. I just tested for 41 positive and 39 inconclusive, and the more I read, the more I am quite sure I do have lyme with bartonella (along with the PANDAS, which has been in treatment for a month and a half. Michael

I haven't done HBOT, but I have done 2 hours per day of breathing with an oxygen mask from an oxygen concentrator. It has helped me a lot. I should point out that it looks a lot like I have lyme and baronella in addition to PANDAS. I really believe the oxygen treatments are great for any chronic condition, and would put PANDAS in that category. Michael

And just by the way, since Caryn points out he was a speaker at the Dallas conference, DVD's of all the sessions on this conference are available for purchase by whatever company it is did that. I don't remember where, but I ordered via internet, and there are a few just great sessions, very worth the price in my opinion. One of those great sessions was the Doug Kaufmann one. Michael

Yes, for me, it is primarily a vegan issue. The fish and fish oils can be polluted with heavy metals as well, something for people to also keep in mind if they choose to use them, but I do hear that there are clean ones (not that I've kept track of which ones were which). I guess that's good to consider especially for those encountering an increase in tics when taking fish oil. If you've tried just one or two brands, and don't know what you've tried to be pure from heavy metals ... besides going to the vegetarian sources, you might also look for a really pure fish oil and try it. Michael

How about that band 41? How are you feeling these days? Are you still on biaxin? Gayle Not sure what the answer to how I'm feeling is. I am seeing some relief from the fluorescent lights and wireless symptoms, nowhere near enough to go back to work, but seeing it headed in the right direction is nice. Those sensitivities have slowly gotten worse over the last 25 years, but with peaks and valleys for overall health and strength. So, maybe the reduced sensitivities is just that I am overall much healthier, with all the treatments, or maybe and hopefully something more, maybe really treating the problem somehow. No idea which it is. I finished the 1 month of biaxin, then took 10 days off antibiotics, and started augmentin last week. The intent of the break was to improve the fungus problem, and really it ended up flaring up for some reason during that time, with now problems with acid reflux during sleeptime, and this fur on my tongue and bad breath to go with it. With the augmentin added to the fungus issue, I am waking up pretty exhausted in the morning. This month of augmentin looks to be quite another grind coming up, so basically just trying to hang in there and appreciate at least I don't have much in the way of responsibility during this time anyway. Michael

Regarding hydrogen peroxide, I have heard some places talk about supplementing with oxygenated water as better for a person than hydrogen peroxide. There are definitely mixed reviews of the hydrogen peroxide in the health community. I do take the oxygenated water as well as breathe air a couple hours a day through an oxygen concentrator. Building oxygen can definitely help. We are oxygen starved here, compared to back before the industrial revolution. Michael

In case anyone is curious ... From IGeneX, negative for all the antibodies--lyme, baronella, rickettsia. On the IGeneX western blot, IgM, western blot was positive for band 41 (1+ out of four possible positives--1+, 2+, 3+, and 4+) and indeterminate (somewhere between positive and negative) for band 39, and negative for all other bands. On IGeneX western blot, IgG, same as IgM, except the band 41 positive was 2+ (instead of 1+). Did not get the CD57 results from LabCorp, the wrong test got ran for that before, got blood draw today to try again on that. There is that controversial band 41 again. In general, the official line would need more than the 41 to be positive for lyme, such as 39 and 41 would do it. Of course, any particular doctor may interpret as they choose. For the indeterminate results, they report recommends re-running test in 4-6 weeks or using different approach to diagnose. So, not too much conclusive in the report. Did get a referral to a local ILADS-recommended doctor in the Infectious Disease field, Dr. C. if I can use that name. Michael

I think it may be a chicken-and-egg question at least a couple ways. Of course we all wonder how we got stuck in this predicament, and how it all started. But also, in trying to cure or manage the situation, I have read, wish I could remember it straight, but there is some interaction between bacteria and fungus. One can protect the other, making it harder to eliminate the other one. The protection may go both ways, or only one way, I don't remember. It's all got to be true at least in terms of lowering immune function, but this was meant more specifically, kind of like how augmentin has the two different chemicals, the one acid to help make it harder for the bacteria to hide or whatever, it was more that kind of idea... Michael

mom-2-2's post perhaps about a month ago, discussing some things she's learned along the way, included suggestion of more EPA per day than DHA (7 to 1 ratio I think). That got me going and relooking, as I had been supplementing with vegetarian sources including DHA from algae, but only extremely small amounts of EPA (4mg per day). I'm restricted more by desire to stay away from fish products, rather than allergy, but it occurs to me to post what I'm taking, just in case anyone dealing with fish allergies is unaware of some of these options out there. The flax oil is high in omega 3's and is good at balancing out the high omega 6 diets most of us have, and the omega 3's can be converted into DHA and EPA. The issue is that only small percentages are converted. There are algae based DHA supplements out there. I tested bad for it, so never took it, but Dr. Fuhrman has a website where his brand of it is sold. The product made by NuTru, called O-Mega-Zen, comes in pills or liquid, is another pure DHA product, it is the one I am using. Spectrum Naturals sells probably a dozen varieties of flax oils in the health food stores, and one has added DHA in it, and that has been a mainstay for me for a while. The 130mg of DHA per Tablespoon is still low, and the 4mg of EPA almost nonexistent, thus the reason for getting a pure DHA product. Some stores don't carry it without special order as it doesn't last as long and is less popular, but it does end up on sale sometimes as a result. It is probably cheaper to go with straight flax oil plus straight DHA product rather than flax with DHA oil plus additional DHA product, and I'll probably transition to that eventually, but I have a bit already purchased to use up. All these things above will likely lead to much more DHA than EPA, and mom-2-2 was suggesting going the other way. I was unable to find a straight non-fish EPA supplement, or even a combination EPA + DHA product that would result in anything more than the same ratio I am already getting. Both DHA and EPA can be derived from algae, so I do believe it's only a matter of time, but right now, the EPA from algae is just too expensive for companies to try to sell. The next best thing is oils with SDA (a kind of omega 3) and GLA (a kind of omega 6), which, particularly when together, can convert better to EPA than the more typical ALA omega 3. Hemp oil is high in SDA and GLA, so I have added that. Unlike flax oil, hemp oil has a good ratio of omega 3 to omega 6, meaning, when combined with most people's diets of too much omega 6, will result in a total ratio that is too much omega 6 (unless also supplement with flax oil). By the way, I use the nutiva brand of hemp oil, along with nutiva brand of hemp protein powder, and am not comfortable posting my reason for avoiding manitoba farms brand, but, if anyone is using or considering using manitoba farms brand, you might PM me and I could discuss there. Another product I just found is Echiomega, made by igennus, a company in the UK. The capsule has various ingredients, it is a soft squishy style capsule, and includes carrageneenan (mentioned because some with TS have difficulties with it). The contents of the capsule just has pure oil from echium seeds, a seed that is just extremely high in SDA's and GLA's, way more than hemp oil even. I just bite the capsule in my mouth and swallow the contents and spit out the shell, as it is extremely difficult to chew, and I can't swallow pills. My body is now testing for two of the Echiomega capsules, plus 1 tablespoon of the hemp oil, plus 1 teaspoon of the flax with DHA oil (includes about 40mg DHA), plus some drops of the pure DHA to add another 100mg of DHA. It's a bit of a production, but I am reading emphasis on these essential fatty acids and so have put a bit of effort into it, as needed due to avoidance of fish kind of limiting choices a lot. My body testing says it prefers this blend much better than what I was doing before, so thanks to mom-2-2 for the encouragement to seek out a better EPA-DHA ratio. This approach of using GLA's and SDA's means you really don't know how much EPA you're getting, since you get what you convert, so, not nearly as scientific as using the fish oils, I'm sure. Just started a few days ago, nothing really to report in terms of making a difference healthwise. Michael

Thanks for everybody's interesting thoughts and experiences. Sounds like from your feedback, my best guess is this is a bit of a detox reaction from really bumping up the antifungals following the antibiotics. I have been totally grain free, and no peanuts or pistachios, and no yeasts or fermenteds or vinegars and so on, only very occasional small amount of grapefruit or granny smith as far as fruits are concerned, and on and on, really feel like I've eliminated about all that I can as far as that goes. I have even tried swooshing the mega-doses of nystatin in my mouth for a while before swallowing, not sure if it helped or not, but it's still there. Don't use the kefir/yogurt products, but will definitely try the coconut oil swoosh, sounds delicious. Timing wise, ugggh, literally just back from an NAET session where we treated essential fatty acids and got instructions to avoid all oils for the 24 hour period, so, that'll wait until tomorrow! Perhaps can try swooshing on the tongue the probiotics I do take, since I empty the powder from capsules anyway. Gat's Mom--Regarding the acid reflux and yeast overgrowth issue, I suffered with acid reflux for over 20 years, it just got worse and worse and worse with time. Finally went to a GI doc, asked if it was candida or anything like that, she did endoscopy and colonoscopy, diagnosed hiatal hernia, said nothing like candida as she would've seen it. I started on antifungals a couple/few months ago, have needed extremely large doses and made amazing progress. Acid reflux is completely gone except for occasional night when bump up nystatin dose and get die-off reaction. I can attest to the acid reflux, at least sometimes, being really caused by fungal/yeast infection, contrary to the lame story the GI doctors sell that your body just making too much acid, because it's just too darn stupid to know when to stop. Given how popular these drugs are, methinks that half the population can't have bodies that are just too darn stupid to know when to stop. By the way, all of these proton pump inhibitor "acid blockers" like prevacid are low-grade antifungals, and this may be some or all of the reason why the have the very limited positive effect they do. Michael

A few days ago, I ended up with this slightly furry looking yellowish-greenish stuff on the top of my tongue, covering a lot of it. I had really strange breath and it made food taste really weird for that day. After the one day, it has diminished, the breath and tasting issues are gone, but it is still there. This came about 5-7 days after stopping biaxin, and just a couple days after bumping up the antifungal nystatin dose, so kind of wondering if it could be fungal or bacteria related. I have seen internet pictures of candida growth on the tongue, and it was white, but otherwise similarly gross. Has anyone had anything like this? Any guesses on what it might be? Kind of wish my doctor hadn't blown me off on Monday, he would've got a good luck at it! Michael

I used to do that quite a lot, not so much recently, I don't think. It can make a person very uncomfortable as they think I'm staring at them. Michael