MichaelTampa

Yes, they are all good things Dr.C. could do with the money. I do think that an FDA approved test would be incredibly meaningful, giving the family a much better shot at credibility with the doctors, before test and after test. It's a matter of when it's time to start that approval process, when you know enough to make a worthwhile test. I think both the PANDAS and lyme communities would have a great deal to benefit from testing more lyme patients, and particularly those children and adults that recently contracted lyme. Does a high test result indicate "PANDAS or lyme or something like that", or does it really indicate PANDAS--how useful will the test be without that knowledge? The question is not trivial, since so many lyme patients have PANDAS, a good number of the PANDAS patients who pursue lyme testing get some kind of result that at least hints at lyme. Lyme testing nowadays is so difficult, both communities could really benefit from that. Perhaps the lyme community would help fund that aspect, perhaps not. My sense is the lyme community is not too aware of the PANDAS and Dr.C.'s research (can't remember seeing a PANDAS post on lymenet.org), so it would likely need to be really explained well to them. To be clear, not suggesting here that there isn't a true PANDAS without lyme, I believe there is, just that, telling the difference is hard and would be really useful to many. I would also tend to trust Dr.C.'s sense of where to go next. The one thing where she probably needs the most input, though, is how much to fund research and how much to help fund those getting tested. That's kind of a broader question. Michael

I am using the classical homeopathic remedy "arsenicum album". In classical homeopathy, they prescribe based on personality type, or something like that. Arsenicum album is used for the very hyperactive perfectionistic over-sensitive-to-everything type person, and is helpful in calming down the sensitivities. I am highly sensitive to many things--foods, EMF's, blinking lights, etc., and it has been helpful for me over the last couple months, and I continue to take it. I haven't heard of UNDAS either. Michael

Joan, I have had a lot of health issues since childhood, they started getting much worse a few years ago. A lot of symptoms were psychiatric, some were sensitivities to fluorescent lights, perfumes, wireless devices. The symptoms eventually led me to a psychiatrist who diagnosed me with Tourette's, something I was completely unfamiliar with until then. While I might have technically squeaked in as qualifying as Tourette's, most psychiatrists would never have looked at me as Tourette's, in some ways it does not fit. Eventually ended up on the TS board of this forum, looking for a way to really fix it rather than take the antipsychotics, and then heard enough discussion on PANDAS there to start considering it. The PANDAS symptom list fits a lot better, as does the lyme symptom list. Michael

I'm guessing 1 gram/kg means 1 gram for every kg of weight the person's body is? Melanie--1 gram total, which would be a lot less than 1 gram/kg? Maybe this is the difference between "high-dose" and "low-dose" that I remember reading about on here. My impression was for PANDAS "high-dose" was more common, "low-dose" has backfired (at least for someone)? (Think I remember reading something like that.) My situation is the lyme doc gave me the strep vaccine challenge to see if my immune system would properly react and make antibodies. If my body after a month hasn't done that, then it demonstrates to the health insurance company a real immune problem worthy of IVIG treatment. My sense was, he really thought I could benefit from the treatment, but it's so expensive he's working on proving the need. Anyway, going over results of this 1 month test with one of my docs tomorrow, just trying to be prepared for a discussion on it. I'm in a bit of a precarious situation at work, was off 4 months, just returned last week, am still struggling but basically need to tough it out and be productive or will lose my job (unless disability company changes mind and approves disability). So, if it can really help me get better quickly, great. But, if it's going to make me stay home away from work for a week, that could be terrible. Michael

At this point, I've been diagnosed both with PANDAS and lyme. The lyme diagnostic tests are not great, but, with symptoms, lead the lyme doctors to say I have lyme. No real PANDAS diagnostic tests, but closest thing I guess, the Cunningham CamK result, which says PANDAS for me. By all parental accounts, I did not have any sudden onset of symptoms like PANDAS is often described with. I have never noticed wild swings of symptoms from strep exposure. It makes me question the PANDAS diagnosis some, given lyme is there to potentially explain the symptoms. I'm just curious, for others with PANDAS and lyme, was the PANDAS sudden onset, are there wild swings of symptoms from exposure to strep or mycoplasma. Just kind of pondering the possibilities, wondering what everyone else diagnosed with both has experienced. Michael

Can anyone speak to what it's like the few days following IVIG? Are people able to do their same routine right away (school, work, whatever), or is there a recovery time? Headaches, tired, ...? Experience with adults might be more applicable to me, but interested to hear whatever experiences ya'all have to talk about. Michael

I have been voting every day, but not doing the "proxy" stuff from other people. I do know some people who are probably not voting and would allow me to vote for them, assuming that's following rules. Is this what the "proxy" stuff is? Can you explain how to do that. I don't vote through facebook, I can't do that, so hopefully you can explain a way to do that where I don't have to use facebook at all. I am hoping to get that set up for June, looking like that's where things are headed. Michael

Lyme needs clinical evaluation, not just the tests. But, if I were to come to any opinion from just the test there, it is showing positive lyme. You've got 3-4 positive bands, including clear positive on band 39, most specific for lyme. Yes, defininitely look into, good to get a well-respected lyme doctor and see what they suggest. Michael

There are some lyme doctors who will treat as lyme with just band 41 positive if clinical symptoms are there as well. There are other infections that band 41 can indicate, and H.Pylori is one of them. Some believe the other possibilities that can cause band 41 to be positive are different enough in presentation that they can tell based on symptoms. In the end, some doctors treat the band 41 people with lyme symptoms as if they have lyme, since they see improvement in health as a result. If you're treating with antibiotics, you really don't know for sure what all you're killing and treating, but it's good to keep in mind the ultimate goal is health of the patient (as opposed to being certain of what the problem is/was). By the way, the CDC guidelines are for tracking purposes, and not meant for diagnostic purposes. Michael

I think the P-5-P version of B6 is thought to be a bit better than the pyrodoxine HCL version, so you might consider that. Can't help with dosage, but do believe it is an important vitamin for a lot of us on here. Michael

I really think it's a bit of a combination. The wireless really affects some people, all those flashing lights and screens and TV's and all that really affect some people too, and just the EMF's from electricity in the walls really affect some people too. I am sensitive to all that. I do want to report, I have been using some products from Gia Wellness over the last month, and they have really helped with these sensitivities. They are all based on the idea of randomizing the EMF's coming out of the devices. They having something to plug in your wall to deal with the electricity (called "home harmonizer"). They have chips to put on cellphones and then other chips to put on other electronic devices. And they have pendants to help your body with whatever is coming around. I am using all these, except the cellphone chips, since I don't use a cellphone. Together, they really are making a difference. They could likely make more of a difference if my employer would install on wireless routers they have in the building. They may one day, but have not agreed to do that yet. I was surprised how much of a difference the home harmonizer has made for me, that's actually the best of them all for me, and I would have thought my sensitivity to the electricity from the walls was lower than some of the other ones. Years ago, I realized I slept better with my head away from the electrical outlet, but I figured that was most of it. Anyway, just wanted to share, there are things that can help deal with these things when avoiding them is not practical. Over the years, I have tried a few other pendants, and never really felt they were doing anything for me. I had kind of given up on that idea, but was desperate enough recently to try these. Michael

I've been taking it for so long, I can't really remember what changes I might have noticed at the time. It is an excellent detoxifier of heavy metals, it is needed for the body to create glutathione (important also for detox and immune system), and it is an amino acid that vegans do not get a lot of, and can be converted to taurine, which is very important neurologically. I know I have heavy metal issues and need detox, and have a worn down immune system, and am a vegan, so I think all those things are coming in to play for reasons. But, can't say I remember noticing anything. I'm one of those people who takes about 50 supplements, they come and go here and there, increase and decrease doses. I use energy testing to determine how much, and even to rate how good each of the supplements is doing for me, maybe dropping the lower performing ones sometimes. So that's kind of why I think it's so good but can't mention any symptom changes from it, at least anymore. Last I checked, I think it was ranked number 8 in a list of 50 supplements I took. Some supplements I really notice a difference when I miss a dose, and this NAC is rated even higher for me than many of those. I took 1200mg per day for many months, 600mg at breakfast and 600mg at lunch. (I weigh 130 pounds for what it's worth.) Just recently, I've cut back to 600mg at breakfast, that's all my body wants now. I attribute that to having made progress with detoxing and getting immune system in better shape, and also upping neurological-helping supplements, mentioned specifically for lyme disease (carnosine, acetyl l-carnitine, to name a couple). Michael

I have used NAC for about a year now for myself (PANDAS/lyme). It's a very good one for me, overall health-wise. Michael

Yes, I believe so..., not only does it really really sting, you can see the stuff shooting out of the machine, flying through air at you ... it fits much better in one of those violent movies, not as much in real life! Hopefully that will do the trick!

Back when lymemom appeared asking about if any PANDAS kids had bartonella (a lyme coinfection), was when I first really "heard of" lyme disease and started thinking about it for myself. A list of bartonella symptoms reads a lot like a list of PANDAS symptoms. Over a period of a couple/few months I managed to get tested and eventually an appointment with a lyme specialist (ILADS member) in my area. The diagnosis was just about 2 months ago now. I got IGeneX tests for specific thinks like lyme (borrelia), bartonella, and rickettsia, all of which were negative, and the IGeneX western blot, which I discussed earlier in the thread. I also got CD57 test from labcorp and that was very low, indicative of lyme. As lymemom said, it is of best use for adults who have had whatever current problems they have, for a while, for, an adult with chronic lyme (borrelia), this will be depressed. Sensory sensitivities, particularly light and sound, seem to be prevalent with lyme, and of course, joint pain is too. I don't have joint pain, by the way, and there seems to be much that is individual in how lyme looks in a particular person. I really consider the wireless sensitivity to be part of sensory sensitivity, but I don't know how anyone else looks at that. Besides the lyme drugs, I am also doing many herbs (to kill bugs) and specific enzymes (zyactinase, serrapeptase, nattokinase) to digest the "biofilm" that the bugs live in, and far infrared sauna (to remove heavy metals that also make up the biofilm), and taking homeopathic "arsenicum album" to reduce overall hypersensitivity as that is perhaps my "personality type". I didn't self-prescribe the arsenicum album, I did go see a classical homeopath (these are available in health food stores for the brave people that want to just try things that way). I am using some Gia Wellness products (pendant, home harmonizer, chips to put on electronic devices) to also help sensitivity to EMF's, they are helping, but I don't know that they help with fluorescents, as the problem there may be more visual ... it is difficult to tell. I really believe the things I am doing are helping, I only wish I could report more immediate results. I am being forced back to work in two days, and am not ready, but I need to do it or else, as they say. Michael

I want to chime in with my 2 cents. I had a wart on the beginning of one of my thumbs for a number of months, almost a year, back before I knew I had PANDAS and lyme disease and severe fungal infection. Probably a clue of an immune issue, that it didn't resolve itself in the time "they" say it will do so on its own. I got mine froze off, came back, and the second freeze-off worked. I hear 2 or 3 freeze-offs is typical for it to really take. Regular MD's sent me to a dermatologist because they have stuff that won't scar. It still did leave a scar, not that it is a big deal on my thumb there. Surprising how painful that freezing stuff was, and how expensive it was for such quick office visits. I'll keep in mind the oregano for next time. That would have been a nice thing to try first. Michael

Just to clarify some of what I just posted, the tindamax and alinia are some of the adjunct treatments frequently needed with lyme. The lyme can change form into cysts and whatnot to avoid the antibiotics, so antibiotics alone in many cases isn't enough. Alinia supposedly kills the cyst form, while abx will kill the active form, so when you take them together you have a better chance of really getting somewhere. Michael

Michael, what is the treatment that you are doing now, what abx? Is this different than the clarith for myco p.? how did that wound up turning out? did dr.k. say anything about that .. or this? For PANDAS, I took 1 month of clarithromycin (biaxin) for mycoplasma pneumonia. I had some really noticeable anxiety and sleep related improvement about 1 week in that probably has stuck, as best as I can figure. After a week or so break, I took 1 month of augmentin, which did nothing for me other than start diarrhea which I still have today, 2 months after I started it. Dr.K. considered the clarithromycin a failure because after 2 weeks it didn't make me a completely different person, basically totally better, and recommended moving on to augmentin at that point. I wanted to "lock in" the benefits so went the full month. I really was supposed to report back to Dr.K. on how the augmentin worked, but haven't. By then, it was looking more clearly like lyme and my life was too hectic then and I didn't take the time to tell him, so not sure what he'd think. At some point in his plan, I was supposed to use prednisone steroid burst to confirm at least it's inflamation related, but then that can be dangerous for lyme cases. For lyme, I have been taking 1000mg of intravenous abx called ertapenem, from a ball called an Invanz ball. As adjunct, first two weeks I also took Tindamax (750mg 2x per day), then switched to two weeks of Alinia (500mg 2x per day). I am in week 3 now, first week of Alinia, but the plan is switching back and forth between Tindamax and Alinia in 2 week periods. I am continuing antifungals nystatin and clotrimazole to fight the candida/fungus/whatever, but they had me stop fluconazole just to save my liver, which is doing okay, but just precautionary. Testing indicates these things are doing good things, along with various herbs/supplements, but not much symptomwise that great to report at this time. In a few days we are going over IGG results to see if I had a poor enough reaction to strep pneumonia vaccine to qualify insurance-wise for IVIG. Michael

mama2alex, So many people get diagnosed with lyme with a much more "negative" looking IGeneX test than your son. I had band 41 positive and band 39 IND and the rest negative, and also negative for lyme, bartonella, and rickettsia. Yet my LLMD diagnosed me with lyme and bartonella. It is just very common to not look full-blown positive before treatment. I am only 2.5 weeks in to lyme treatment, so nothing too much exciting to report, but I'm sure I'm on the right track. I also had a very high CamK (183 I think), and experienced some improvement with antibiotics for PANDAS, but it was very limiting, so I'm much further along with lyme treatment now. Sorry if the treatment for lyme seems overwhelming, but it really looks like that's what it is. Agree an ILADS MD might arrange the best plan. There are plenty of things you can do in the supplement category to really help the treatment work better. It would be very useful to read the "treatment and diagnostic hints" available from the ILADS website, lots of helpful advice there on supplements near the end of the document. One last thought for now, if you can afford it, unless you are just overwhelmingly healthy, you might also consider getting a western blot for yourself. Michael

Just a curiosity, I noticed today the location of the PANDAS project was listed as Pittsburgh. I thought previously it was Oklahoma, or maybe just assumed so. Does anyone know, what role does Pittsburgh play? Michael

I have been voting every day, but yesterday wanted to vote for on of the other "friends" group and leave a message. It was a bit of an effort finding the group, and then was not able to find where to leave a message. Knowing the name of the group still leaves a lot of work to find them, unless I'm missing something. Any hints on finding the group and then finding the place of where to leave a message? Is it before or after voting? (I'm on dialup here, means slow things just get too hard at some point.) Michael

mama2, Sounds like you might be really on to something. Sometimes if the herx is too bad, it can make sense to lower the dose a little bit to move back to a manageable level. Curious what specifically you're using as far as enzymes. I'm taking drugs for lyme, and also supplements for the biofilm aspect of things--zyactinase, nattokinase, and serrazimes (similar to serrapeptase). I am also taking kyolic garlic and fiber supplements. Again, curious which ones you are using. Didn't know fiber could take care of biofilm, but perhaps to help mop up the dying strep bugs? The EDTA is also for biofilm? Michael

Puzzling if the ranking is really this, or more like 30. When I try to list all those in the $50,000 category, by rank, it shows up about 30 on the list, but still calls it 153 or whatever. Perhaps it's really 30 in the $50,000 category but 153 overall. Either way, seeing how it only starts by listing so many, probably important to get high on the list as early as possible, so it will be seen more... Here's hoping we can spread the word and everyone will vote! Michael

Thanks for the link, that was kind of the discussion I was looking for. Still a couple weeks away for me in terms of getting the results.

Referred to this in another post, but was curious how others are dealing with it. My doc, treating lyme, tested IgG antibodies to strep pneumonia, they were low (showing not fighting that bacteria). Then, they gave me a vaccination for strep pneumonia. After 30 days, we test again for antibodies. If they are still low, then that will apparently be evidence enough for an insurance company to accept that there is a problem worth covering IVIG to treat. Just curious, if this is a common approach to justification. I was definitely leery about the vaccination, and wondering what bad things it might be doing to me. I did have a bruise and soreness/pain on my arm for 10-11 days where they shot it in. That is somewhat typical for me with vaccinations, as an adult anyway, where I can remember. Any other approaches out there? Michael