tpotter

I would also be looking for mycoplasma pneumonia, bartonella and babesia. They can be responsible for the ragey behavior, and Ithink it would definitely be worth looking into it. for the record, we did tindamax very slowly, and had inimal trouble (and were dealing with rages.) But, everyone is different.

I totally get the part of being broke about 1/2 a decade...we're in the same boat. At least you have the option. I know that ART testing seems so bogus, but what it has found has been nothing short of accurate for us...and not just from one person doing energy testing. So, I thought I'd mention it.

Darn...I wish I had seen this back in Feb. I would have loved to have planned to go. I'm not very far away, but I can't do it that weekend. Please take good notes. And...why have I heard of Dr. Usman? Where is he out of? That name sounds very familiar.

I also do acupuncture, although it wasn't for tics. That being said, it helped me immensely with my lung problems and he also really targets my immune system. I picked one out off the internet, and chose him, because he has 30 years experience (turns out he's only 37!), and is Chinese. I figured I'd try him out, because I just felt like I had to do something different. It has really helped me a lot. You also might want to look into ART for diagnosis and tx. We've been doing that, and it has helped immensely.

Have you considered getting evaluated by an ART practitioner? I don't know what you are spending on all the tests that you're doing, and I know that money is tight, but would it pay to get tested to see where you stand? From what we've found, ART has told us that my younger son, for instance, was dealing with strep in the kidney, some bartonella, mold, and several other things. I wasn't expecting some of the answers she came up with, but they made sense and are responding step by step to tx. Just an idea.

You mentioned that she backslides when she gets sick, which is often, so I'm wondering what you are doing to support the immune system? Since we started doing that in earnest, as well as controlling yeast (but we do use diflucan, as well as a LOT of probiotics, and are also treating other infections...including several viruses, lyme, co-infections, and also treated mold that turned out to be a problem, we haven't been getting sick as often or as hard as previously. BTW, for the immune system, besides supplements, my children do regular chiropractics (found a great person in network nearby), and I was getting regular acupuncture (worked great until the mold became a huge problem, but then repeated, and I'm getting a lot better.) Everytime he would stick a needle in that made me jump (not all did, mind you), I would ask: "What is that?", and his response typically was "immune system!" 90% is FANTASTIC!

But it was NY where I suspect my whole family got bit. Yes, ironic. I have to wonder whether whe actually already had lyme, and then got it worse in China. But, I still question the outcome of the case.

completely agreed. Personally, I think our doctors here are more responsbiel for my son's loss of short term memory, seizures, and other issues for not recognizing his post infect. encephalitis...and even worse, certain hospitals and doctors and family members denying he was even sick, and trying to give him a dx of conversion syndrome for 4 years before he was actually diagnosed, than that school was. I feel terrible for that girl, but they're going after the wrong people.

I totally respect what you are saying, but I still think that too many parents new to the PANDAS side were not getting the benefit of all the information (in addition to lyme) that was being discussed on the Lyme side. PANS, by definition is infection, environmental and/or metabolic disorders, and the NIMH mentions lyme as a possible trigger. So I really think that they should be combined. That being said, I think that all the arguing about having to check for lyme and co-infections has died down. I also frequented both forums, and I was constantly seeing posts on the PANDAS forum about checking for lyme and co-infections and viruses, and "other things' mentioned when parents couldn't figure out what else might be going on. And, there weren't battles ensuing as a result. So, it was already being discussed in PANDAS (but not forced), and I don't think it's going to escalate again like it did 2 years ago when it was first brought up. Personally, I'm glad that it was combined, because I think it will help the new parents to see the big picture. And then with additional information, we can all decide what best fits for each of our childrens' and our own needs.

I like that the doc is looking at virues, and heaven knows that HHV-6 can be a problem. Additionally, I would look at the possibility of other infections, too. Sounds like you are from the NY area, and lyme, babesia and bartonella are big problems there, now. I would definitely test for that, and even consider seeing an LLMD and/or ART for diagnosis, because the lab tests are not terribly accurate, and as such is considered a clinical dx. Also ART can get answers differently. Sounds like your doc is onboard with understanding that if all infections are not taken care of, the problems will not go away. Glad to hear he read the newspaper

S&S also mentioned about getting the co-infections (which many believe are not co-infections, anyway) dx and treated, as well...if they are there. Those include: bartonella, babesia, erlichiosis, rmsf, anaplasmosis, and probably others I missed or haven't heard about, myself. So, yes, I agree that it's time to find a LLMD who's opinion you can trust. If you need the name of one, mention where you live, and I'm sure people can recomend theirs (I certainly can recommend mine.) Good luck.

If it's c-diff, you definitely need to get her treated. This is serious. also, I take something called: Glutaloemine by Igenex (only available by authorized provider). I usually take 1 scoop daily, but lately my diet has changed (not for the better), so until I clean it up, I'm using 1 scoop twice a day. It's a combination of glutamine and aloe, and really does help me a lot.

Viruses are also a problem here...and don't just let the docs tell you that if the IgG is high, but not the IgM, then you have nothing to worry about. The way I look at it is that if there is a low and high normal number that it's supposed to be between, and it's not...well, then it's just plain abnormal, and my kids and/or probably need to deal with it! Valtrex is one option, and then there are also supplements. There is a Vitamin A protocol that we have done with our ART practitioner. But I would only do it with the help and guidance of someone who knows what s/he is doing. But, yes, you do want to get viruses under control

Ditto. And, I was also concerned that the new parents were missing a great deal of information that we were discussing on the Lyme forum but not the PANDAS forum, such as MTHFR, mold, and all of LLM's detailed information that I am still trying to digest :-) Now we can all have access to all the current info.

What about trying ART? If you're interested, PM me, and I can give you some additional information

I also thought you lost your appeal. But, that being said, I don't know what to say. What does your advocate say?

could be congenital lyme and/or congenital something. We now know (according to the NIMH), that it is not only strep that causes PANS, but rather different infections, environmental and/or metabolic disorders. I would definitely check for other infections, such as lyme, bartonella, babesia, erlichiosis, viruses, mycoP (at the least.) If your child was sick when immunized, the immunizations probably would have played a role in it, as well. I would also get your dr. to do a full immunological workup, and more. PM me if you want more info.

Ditto, ditto! What an arrogant ****! Also, if your daughter is raging, I would be also testing for mycoplasma pneumonia, bartonella and babesia. Keep in mind, though that bart and babesia, like lyme, have a very high rate of false negatives, so you may need an LLMD if you suspect it. Does she have a dry cough, chest pain, or salty tasting sputum (all symptoms of mycoP). Does she have a rash that looks like reddish/purple stretch marks (or cat scratches) on her torso, arms chest, back or legs? This could be bartonella. Does he have elevated liver enzymes, enlarged spleen? This could be babesia. All 3 of these disorders can cause rages. Strep usually doesn't (although I would still followup with the rapid plus a longer culture, and even if they come back negative, I would also get a blood test for ASO and AntiDNAse B, because the strep may elsewhere. Our kids don't clear infection like other people do, because of their autoimmune conditions, so to assume that she's cleared it because of 1 shot of bicillin is absurd. My DS has been on bicillin injections weekly (just decreased to every other week) for a year, and his ASO is not completely down. Find another doctor fast! You don't need to be wasting your time on people who just don't get it. We have had her tested for myco--her igm? was really high, I've never seen stretch marks on her. We've had her tested through labcorp for babesia and bartonella--both negative, but I know that testing isn't reliable. I do think that she probably has bartonella, but i couldn't prove it. However, I did just get confirmation that she, or someone, has strep. She has been raging this evening, of course, and 20 minutes ago, she came into our room telling me she was sorry--highly unusual for her these days. And soon she was saying that she couldn't sleep upstairs, it was too scary. Couldn't sleep in a room with a window, not our room, etc., everythng was scary to the point of shrieking. Sudden OCD which has only been happening when she, or someone else has strep. Might happen with other illnesses, too. Our family just seems to love strep, so it seems like it's always around. Is the mycoP being treated? It won't go away on it's on, and is very hard to treat. Actually, the tx for it is very similar to bartonella tx. Turns out my IgM was the one that was high in our family, DH's was extremely high normal (top number), and both my boys IgG was very high...would double when my IgM went up again. Been treating it along with bartonella and others for the past 2 years with the help of an LLMD. I would highly recommend that you get to a good LLMD with her, as soon as possible, especially since you suspect Bartonella, too (Lyme, Bart, Babesia, Erlich are all clinical diagnoses in the absence of positive blood tests, because the tests are so highly unreliable.. What state do you live in, and people can give you suggestions. I would suggest you post this on the Lyme forum, too....boy I really wish these were combined back to "PANS." It's really all inter-related.

Ditto, ditto! What an arrogant ****! Also, if your daughter is raging, I would be also testing for mycoplasma pneumonia, bartonella and babesia. Keep in mind, though that bart and babesia, like lyme, have a very high rate of false negatives, so you may need an LLMD if you suspect it. Does she have a dry cough, chest pain, or salty tasting sputum (all symptoms of mycoP). Does she have a rash that looks like reddish/purple stretch marks (or cat scratches) on her torso, arms chest, back or legs? This could be bartonella. Does he have elevated liver enzymes, enlarged spleen? This could be babesia. All 3 of these disorders can cause rages. Strep usually doesn't (although I would still followup with the rapid plus a longer culture, and even if they come back negative, I would also get a blood test for ASO and AntiDNAse B, because the strep may elsewhere. Our kids don't clear infection like other people do, because of their autoimmune conditions, so to assume that she's cleared it because of 1 shot of bicillin is absurd. My DS has been on bicillin injections weekly (just decreased to every other week) for a year, and his ASO is not completely down. Find another doctor fast! You don't need to be wasting your time on people who just don't get it.

I agree, try giving it in the a.m. If the problem continues, try eliminating it, and see if it improves. I've never heard of d3 being a stimulant.

Definitely TAKE DOXY WITH FOOD! Our llmd said that it's only tetracycline that you don't take with food (even though the pharmacists put doxy down as not to take with food.) You may have also gotten a second lyme infection and/or bartonella and/or babesia. You're not immune to getting it again.

H-pylori is the bacteria that causes ulcers.

Yes, DS did take mepron. It is rather gross, apparently (I didn't taste it, but looks gross, and it's super bright yellow.) I think we may have mixed it into applesauce, because we mix most gross tasting things into that. But, it's been about 2 years, and I can't remember for sure. But, you don't want to mess with babesia...wrecks the red blood cells, spleen, etc. Definitely worth taking. I bet he doesn't leave your child on it for terribly long (we did 2 months, which is way less than all the other things we've done.) There are alternatives, too, but again, we used mepron and DS is ok. I'm actually more concerned about how long my DS has been on tindamax (I think almost a year...1 week on/1 week off) than I was about the mepron. BTW, DS tested negative for all lyme and co-infection at first (actually there were several indeterm, but it wasn't until after starting treatment that he finally tested positive for erlichiosis. BUT, he had symptoms of babesia (enlarged spleen, elevated liver enzymes) and bartonella ("stretch mark" rash, and rages), so there's no question he had both of those. If Dr. J. thinks your DS has babesia, I would listen to him.

Ooooh...I wonder if it's like "blood-letting?"

I would absolutely ask about doing those bicillin injections again if things get ragey again. Also, check for mycoplasma pneumonia. That, as well as bartonella, and babesia can cause the rages you're describing. Glad to hear you're also going to see an LLMD. Good luck.