MichaelTampa

I've been focusing a bit on the mold/dust/etc. issues in our home. I don't know that there's anything serious yet, but doing what we can. Just replaced living/dining room carpet with tile, was amazed at how much dirt was underneath the carpet. It could have filled a 5-gallon bucket! Anyway, brought me to the topic of old mattresses, they are probably collecting dirt or dust and who knows what else. Of course, a new one would normally bring with it lots of fun chemicals. Here is one idea, for making a mattress out of straw, that seems interesting to me. http://small-scale.net/yearofmud/2009/09/11/how-to-make-your-own-35-straw-mattress/

That's the thing with statements like that, it's very likely true--in his world, in his experience. The trick is in sorting out how much it applies in your world, such as, Australia, maybe not much at all.

I guess another thought here might be to review at quantity/quality of probiotics you are using. I imagine it could be just herxing. I have had stomach aches and acid and so on from treatment, but then, for me, that was just reoccurrence/heightening of present symptoms. Common stuff is headaches, fatigue, anything detox related (oily skin / pimples), and any symptom already present. Beyond that, while possibly a herx, perhaps worth spending a little more time thinking about other explanations.

Are there some good tests to look for inflamation of some sort? Like C3 and C4, or C3A and C4A? Not an expert on them, but have seen discussion on them in this forum in the past. If you don't have them, perhaps be prepared to ask for them? If you have them, perhaps bring the results?

Gosh, my memory was it was like 4 weeks. I remember it being an excrutiating wait. Then they came in, and my doctor's office wouldn't let me see them until an appointment, which caused another 2-3 week wait!

Regarding the autism, an a-little-bit-out-there-but-very-prominent lyme doctor believes 90% of autism is caused by lyme disease. He speaks as if he and another doctor have a bit of a track record of actually curing autism with lyme disease treatments. Suspicion is always warranted regarding diagnosis that feel much more like a collection of symptoms than an explanation (such as autism is, one of many, really). It is such a shame the doctor's often feel their job is done when they reach that point. Perhaps all the medical school gives them a feeling that the books have all the facts, and no thinking and learning in the future is ever required? Regarding the autism, though, that theory does fit with one of the autism theories that get brushed aside by the power-brokers--it's mercury poisoning, it's the vaccinations, or it's mercury poisoning from the vaccinations. We do here of the sudden onset of autism from vaccinations, so, for some people, that plays a major role. Vaccinations do supply a nice hit to the immune system, and someone with autoimmunity issues might react quite poorly. They also do, or used to (sorry, not up to date), provide some nice mercury. Of course, the mercury is everywhere, it is in every food we eat and air we breathe, to varying degrees, for sure. Heavy metal toxicity is part of lyme disease. My dentist likes to say, "borrelia + mercury = lyme", a little simplified, of course, but some truth in there.

I haven't heard specifically of that type of headache as a herx. But, I have heard of headache as a herx, very common, and most don't describe the headaches, so difficult to say. I have had headaches like that, back before I started treating for lyme+bartonella. They came from exposure to wireless signals, and also did get very impaired thinking and memory and so on. Acupuncture helped. Sounds like possibly hormones may be playing more of a role than wireless, but, certainly could be herx. Herx or not, though, keep in mind, the lyme can be dangerous, and the herxing is too. Sometimes the docs have to make very difficult decisions on whether to take people off the meds--are they killing the patient with too much herxing. These are probably very rare cases, but can happen, point is, symptoms of lyme can be dangerous, and herxing is the same thing. The doc is right to be at least thinking about possibility of seizures, yes, that's what he knows, and it does happen with lyme, although I imagine quite infrequent. So, yes, if we had every possible concern checked out, it's a lot of money and time and a lot of checking about things that aren't going to happen. Just be aware of the other side that just because it's herxing doesn't make it safe. I might wonder or ask neurologist why headaches and poor thinking would point him in the direction of questioning seizures--headaches and poor thinking really are very common lyme symptoms (though, perhaps the type of headache not as much so).

I'm going to take the liberty of assuming you're asking, at least party, as you ponder what your future has for you. I would say, generally, if you reach the point of having tried what has been successful for those that have had success, that would likely indicate there is something else going on instead of the PANDAS, or, of course, in addition to the PANDAS. Be aware that a high CamK does not definitively mean PANDAS, it can also be high in cases of conditions such as lyme (as was the case for me, for example).

Yes, there are kind of guidelines on the IGG and IGM and how long they stay around, and then we hear exceptions and differences too. After treatment, I don't think the western blot is going to be that useful. Perhaps doing them every few months or so and then looking at the patterns--more bands coming, some bands going, and so on--might provide some information, or at least interesting speculation. But I'm not sure it would be worth the bother. Perhaps some other tests (beyond symptoms, of course), like CD57 and inflamation markers like C4A, would be helpful at that point. Like pixiesmommy refers to, it is likely unrealistic to expect complete elimination of all lyme bacteria. I imagine that is the reality with most infections, like colds, viruses, strep--some things are just everywhere.

I think little is really known about this. There are examples of people who have been in a situation of true recovery from lyme disease, who get bit by a tick and then get lyme disease again. But even this doesn't mean they didn't get immunity to the strain they had. It could be a different strain. I don't think there is any evidence to suggest that people develop immunity. But evidence of that would be difficult to come by. So, I don't think we know. I am guessing not. There are plenty of people who relapse, and I think a lot is about trying to keep the immune system strong. I have seen links to articles here and there are about genes playing a role in response to the bugs, so perhaps there are "normal" people who do a lot better. I have never really studies those articles carefully. But I don't know that they are "immune" either.

Where I think the basic lyme testing from IGeneX, like the western blot, is used/accepted fairly widely by lyme doctors, getting that test before-hand can be helpful for the doctor in making the initial evaluation. The coinfections, I think less so, and for those looking to spend money carefully, probably best to start without the coinfection tests. They may not be needed, and also, lyme docs tend to have more varied use of tests for coinfections, so it might not be the ones the doc wants anyway.

Can't say that I've ever even heard of the vibration thing. Is it possible that on some level it is like a muscle spasm?

Certainly cycling the abx like that could cause cycling of symptoms. Someone on here was giving abx on weekends only, I think the reason was more to avoid the difficulty during school. I am likely just about to start abx only M-F. My doc said it was soon time to do that. But this is after months of every day abx. I believe my doc is credited in one of Dr. Burrascano's writings with innovating the "pulsing" of abx, which involves some time period of a break between abx. The theory is that the bugs start hiding with daily abx, and then you give them some days off, they come out of hiding and you get them. It does make sense to me (no expert, of course) to use more near the end, in the beginning, you have just way too many bugs to worry about that. The theory with early on not on weekends could more be related to trying to give the gut and liver and rest of body a break from the abx, as they certainly do have their downside as well.

I use the Nutrex brand of spirulina and find it excellent. Available at vitacost.com and/or iherb.com. I'm so happy I can take it again, for about a year my body was seriously rejecting/reacting to anything with beta carotene or vitamin A in it, and just a month ago my body decided it was over that. The Nutrex brand doesn't come in capsules, unfortunately. It comes in tablets or powder. The tablets are terrible, as it just clumps all over your teeth and takes forever to clean up your mouth. I stir the powder into water, and let the fork soak in with the water/spirulina for 2-3 minutes before stirring again. Doing it this way, I can get most of it off the glass. It's very clumpy stuff! But I barely taste it at all, too bad the taste is bad for you. Maybe capsules for you. I have made capsules of many different things, usually dried powdered herbs--red root, suma, sarsaparilla. Takes about 10 minutes to make 50 capsules. Where I live, the health food stores sell these capsule maker things, about $10, and also empty capsules to fill--gelatin or vegetarian. I think you could make capsules easily enough with the spirulina if you want to go that way about it. During the process, whatever you're filling the capsules with does inevitably get on the outer shell of the capsule, and you can get it mostly off with your hands, but some will still be there, so it might not be completely tasteless.

I think when I was pursuing I saw exacerbations as a good link and explanation for what was going on, was very caught up with looking for a cause. But, never from infections, never 4-6 weeks or anything like that. It was more like, spend a couple days in a hotel with wireless devices and fluorescent lights, then upon any little trigger of something someone does not right, big rage attack. Rage attack perhaps minutes or hours. But other symptoms of headaches and fatigue would come from these environmental triggers, but would typically to go away overnight with sleep. It was all very much caused by the environmental triggers, and would wear away over hours or a day or two. On the CamK, not an expert on that anymore, not sure if it's inflamation like you say or antibodies or whatever. But, only know that, it is not infection specific, lyme will cause a high CamK, just like PANDAS. She didn't give any special explanations for me in particular. I'm kind of guessing at this point, that I never had PANDAS. All the past symptoms are now explained from lyme, have almost gone away with lyme treatment (still continuing treatment at this point), never really had an exacerbation that appeared triggered from infection. I think mid-20's is a fairly typical vitD for lymies, but I have heard of lower, like 8. I know when I got my 25 or right around there, my doc said he had never seen one that low. Perhaps another lyme clue would be you keep taking vitD, you get no change in the test levels, bump the dosage, still no effect, and so on. This happened to me, I think others as well. A doctor who checks these levels in patients and has them supplement to get it up would probably be a good resource, they could speak to how quickly it goes up in "normal" people (if they have any such patients). It's a clue that something is seriously depressing the levels (chronic infection such as lyme), but also note, the lyme bugs will use vitD too, so that could be another reason why they suppress it. I'm saying all this, but keep in mind, I don't know at all what happens to vitD with PANDAS in absence of lyme--perhaps the same, perhaps not. By the way, I always caution on vitD supplementation, for everyone, but particularly for those with lyme. It's a hormone, something to be careful about, and you could easily be helping the lyme more than you're helping yourself. On the exacerbations of longer length, gave a talk recently to a local group, mentioned I do believe there a numbers of people infected, low level though, low level of symptoms, doing more or less okay, explaining the symptoms in other ways. Then, you have some event--trauma, accident, death of relative--and the person reacts very badly to the event, much more so than one would expect. This happened to me, spent a couple hours in very cold water thinking and thought I was going to die as the sun was slowly going down. I got PTSD, no surprise, but my chronic fatigue, my headaches, my wireless/fluorescent light sensitivies, and on and on, all got worse, slow recovery from PTSD, and so on. This happens to others with low-level lyme. The PTSD creates real physical problems/weaknesses via chemicals, and accidents like broken bones or exposure to cold, all these things weaken the body physically. What happened to me there is the lyme had a wonderful place to grow following that event, my immune system was just severely weakened by that, that is why all the lyme symptoms got worse. This took probably 3 or so months to get back to functioning symptomwise anything close to what I was at before, even with lots of treatments along the way (but none were lyme targeted, this was before all those ideas came up). Anyway, finally getting to the point of, yes, maybe one exacerbation of longer length, a pretty dramatic one. I guess I mention it in the light of, some longer exacerbations can be lyme related. For anyone trying to sort out an exacerbation as PANDAS vs. lyme, a little tricky. Another reminder I think, to look for, in PANDAS as distinct from lyme, is it really triggered by exposure to infection.

As an adult, I hadn't responded, thinking I'm a bit out of the group you're looking at. But I think I can add a few tidbits. After being diagnosed with TS, I ran into this site and then considered PANDAS and then lyme. I had a 183 (or 186?) CamK score. Cunningham will say that the score relates to autoimmunity but is not specific to infection. My TS diagnosis really came from major psychiatric symptoms of depression/anxiety/OCD with minor tics/spasms. But, I did have rage attacks--not as horrific as some I've seen described here as similar to that one movie where the kids are possessed--but plenty bad enough. And the rage attacks were exacerbations--but, they were documented as responses to environmental stimuli (fluorescent lights, wireless devices, perfumes, ...) rather than bacteria or virus. I really think that's the key in differentiating PANDAS from lyme--exacerbations from the bacteria/virus. I think some things that MAY help differentiate lyme from PANDAS are: chronic fatigue, joint pain, muscle pain/fatigue, and other neurological diagnoses such as autism, ALS, and MS. As every story goes with lyme, every case is different, you don't need chronic fatigue to have lyme, you don't need joint pain to have lyme, and so on. But, if someone has not just low-level lyme but significant levels of lyme in their system, untreated, over time, the chronic fatigue is going to get there. I don't hear about chronic fatigue much in PANDAS, but have with some lyme kids, it seems a big signal to see that in a kid, they are normally so energetic. Depression is another one that commonly develops over time with lyme. One well-known lyme doc will say that 90% of autism is lyme, and perhaps that's just his experience based on who he ends up seeing, but it seems there's a bit of a pattern there. Vitamin D levels for those with lyme do get extremely low. I have no idea what people see with PANDAS, but that might be another thing to look at. Anyway, wanted to give you what I think are a few clues in helping differentiate lyme from PANDAS.

That rash is most commonly associated with bartonella. I do hear some LLMD speakers say that with "lyme" you can have all kinds of rashes, not just the classic ones, so, I guess, perhaps, doesn't have to be bartonella.

seconding what tampicc said

Assume you're talking about Houston Enzymes brand. I use that, their site does say fine to take out of capsule and sprinkle on food. I use several of their enzymes, open them all up as I cannot swallow capsules, works fine.

Possible all of that is a herx, yes. Possible it's lyme or myco.p. or both. Please note, while the range they show on the report may have 60 as barely normal, 60 is not healthy, 60 is evidence of a problem.

There is a book, "Explaining Unexplained Illnesses" by Martin Pall, where he present some cycle in the body related to nitric oxide and peroxynitrate, that can cause illness. It is seen commonly in chronic fatigue, chemical sensitivities, PTSD, and multiple-system illnesses of which lyme disease would fall in this category. He actually presented this as a potential new cause of disease. That may or may not be correct. But, there is a lot of information in there about methylation and how it relates to these illnesses. Also, a lot of suggestions, some of them are vitamin B2, B6 (as P-5-P), and B12. Interesting you are feeling tired from vitamin B. I wonder, is it giving you energy to fight lyme disease and causing tired/herx reaction? Is your methylation backwards from most people (over-methylated rather than most who are under-methylated)? Don't really know what to make of your situation. One thing I did that helped a lot, that might help you (or, if you're backwards, be a bad idea?), is oxygen therapy--breathing 97% pure oxygen from a concentrator. Lincare rents them, Rx required there. I bought one from a place that also required Rx, for about $500. While Martin Pall was not gung-ho about O2 therapy in his book, I remember feeling like he explained some of why it had been so helpful for me. Don't know if this will be helpful, your's is a situation I don't think I've heard about quite like that, just throwing out the thoughts I have here.

Yes, some itchy, also some feeling of something crawling on or under skin. I hear the docs think it's neurologically caused.

A couple other ideas: - keep records of all the expenses to tax deduct, even supplements, if purchased upon recommendation of a doctor for treatment of specifically diagnosed medical condition, can be tax deductible - some meds are actually cheaper compounded than they are in pill/capsule form, although less convenient - of course, there are the foreign/internet pharmacies as well

Looks like you'll get your wish of SOMEONE asking about the letters. Understand the PANDAS, for sure, but what is "TS-L"? Cute outfit!

Some people need IV's, and that can be $6,000 per month, maybe $600 if covered well by insurance. A lot of times, they will cover just 1 or 2 months. So, longer would be very costly. For a while, my oral abx has been about $2,500 per month. Covered by insurance, perhaps $250/month after the deductible. But January and February were quite costly for me this year because of the deductible. Some of the babesia meds are MUCH more expensive than the stuff I'm taking. Not everyone will get the 90% coverage I'm getting, perhaps more, perhaps less. But, definitely, they really do add up. I know that there are several people where the ins.co. stops covering the oral meds, too. Hasn't happened to me, but it does happen. On the probiotics, I have stuck with Natren's, which has been very expensive for me. They make one kind with 3 types of bacteria in the same pill, but it's covered with gelatin, so I get a different version they have for vegans where each bacteria is in a separate pill. It's costly and, if I knew how much it would have been, I would have worked harder to find a cheaper one that's good. But, it's been tough to think about changing that, not wanting to mess with things somewhat, and not wanting to work at it. I did once, see in the store, PB8, something like that, one on the list my LLMD gave as good probiotics. I had never heard of it at the time, so didn't pursue, but ran into it lately, noticed it was much cheaper than what I was paying, but still not brave enough to mess with things. There really are many options there, particularly for those non-vegans!