matis_mom

I think Peglem had luck with Rifampin combined with Augmentin...you might ask her. There's also Azith (done that one yet?) or Clindamycin. (Just throwing more options for your doc! ) Well, actually, I think perhaps we are dealing with more than strep. What we are doing should have the strep all knocked out, but here we are in the middle of another exacerbation. So far, we've done the rifampin/augmentin 2X. Each time we got @ 3 months of good times, then exacerbation. So we're going to do another round...if we only get good for 3 months then I'm officially dxing my daughter w/ SOT. What's SOT?

I think Peglem had luck with Rifampin combined with Augmentin...you might ask her. There's also Azith (done that one yet?) or Clindamycin. (Just throwing more options for your doc! ) Thanks Eamom! I'll keep those in mind. Coincidentally, my son is doing great now that we are adding Azith M-W-F. I might try that for myself. I was just reading a very interesting article on Lyme treatment and it's fascinating because they explain how the different antibiotics work. I posted it over on the Lyme forum if anyone is interested.

Maybe this has already been posted, but I found it both fascinating and depressing But I guess it helps make sense out of why anyone would need all those abxs! http://www.lymenet.org/BurrGuide200810.pdf

The way our doctor explained it was that once the tonsils are infected they become an absess (sp?), and they block the antibiotics from going any further. So while it doesn't "cure" PANDAS, it makes treatment more effective (supposedly). Isabel (who is thinking of getting her own tonsils out!)

I'm going to try those Lara bars! Anyway, I was going to suggest fruits, nuts, hardboiled eggs, brown rice (I absolutely LOVE brown rice!), baby carrots, celery sticks, leftovers from the night before, canned tuna, canned sardines, etc. Do you like cooking? There are a lot of very yummy gf recipes out there, but I guess you are pretty booked with school and all. Also, if those bars you've been using do not need to be refrigerated, it might be a good idea to keep some in your backpack or locker in case of emergency. Skipping lunch and letting your blood sugar go too low is a recipe for disaster! Also, since we are in the subject, make sure to bring your own water bottle and DO NOT USE WATER FOUNTAINS! That's a sure way to catch anything that's going around.

I know there's been a million posts about different supplements on the PANDAS forum, but I'd like to start a thread that is more Lyme specific. So far, I've heard magnesium is very important, and maybe some kind of binding agent (charcoal, bentonite, chlorella), and maybe enzymes to help with biofilm. And of course, a good probiotic. Could others share their supplements? If you could include brand/dosage that would be great. I am having a hard time with the logistics of administering antibiotics, supplements, and probiotics to 8 kids, plus my own. There does not seem to be enough time in the day!

The way I see it, THE SUPER BUGS ARE ALREADY HERE! So we have to hit them with all we've got. In the last 30 days, I've been treated with Augmentin, Biaxin, and Cefuroxime... my doctor said, "if this doesn't work, you're screwed!" I love my doc, but did not like that remark! I know there are other things to do, but I don't think she's willing to go there. I'm making an appoinment with an infectious disease specialist just in case.

thanks ladies for the replies! I'm going to keep my dd on Cefuroxine then, to be sure we cover strep. She seemed to snap out of her PANDAS-like worries/obsessions/intrusive thoughts a couple of days into it. For ds, I'll keep him on XR. Funny thing is the abx were free through our local grocery store (the pick up the copay!), but I'm going to spend a fortune in probiotics! I started a triple batch of homemade yogurt... hopefully that will help. I'm also thinking of keeping everyone gluten free, lactose free, but I'll have to take it slow.

Thanks for that post, Tpotter! I really needed to hear that, since I am going into panic mode here! I think your PCP is right. I am going to look for a PRUDENT doctor. One who neither dismisses the whole thing, nor orders every test in the list (Our dear PANDAS doc called it "the rule of 35": if you order 35 tests, one of them is bound to find SOMETHING!). Not saying tests are not useful, but yes, we need to be prudent, especially since this can be a long battle, you don't want to spend all your $ in round 1, and then find you are out of resources to fight it to the last. That's why I am so thankful for my PCP. She is treating me without a positive test. I brought up IGENEX and she said yes, sometimes it's worth doing, but she doesn't need it at this point.

Melissa, It could be viral, allergies, or Strep! It's hard to know without getting it checked out. My son got an ear infection while on XR (but coincidentaly, we were trying to switch to Zithromax, I saw him backsliding, changed back to XR, but a couple of days letter he had an ear infection). I wound say if he is not any worse PANDAS-wise, it's probably not strep, but just in case I would take him in. Our pediatrician is used to our weekly visit by now!!! This week I was in there Thurs, Fri, AND Sat (finally got her to treat everyone again, yeah!)

After I mentioned to the pediatrician what my PCP thinks (that Lyme is the reason we all keep getting strep), she agreed that is a very strong possibility and that at this point we might want to think about treating everybody. I said I did NOT need to think about it! So here we are, the house looks like a pharmacy! DH is going in Tuesday (he and I have the same doc), and I'm pretty sure she'll prescribe for him too. And I better go get something for the dog too, just in case he is the one harboring strep. They gave the younger kids amoxicillin (including the baby), and the older ones doxycicline. She even gave me a script for Matias, who is already on Augmentin XR, but I should probably check with Dr. L. He holding pretty steady, so I hesitate to rock the boat. BTW, does doxy work for strep too?

Went to the pediatrician today to check out ds14, and bring back ds6 who threw up this am. She was saying oh maybe it's just a bug and we are still waiting on the cultures (rapids were negative). So I told her about my situation (I actually had her look in my throat on Thursday), and that Dr. L. wants us to jump on this, and how I'm worried about dd10, etc. She agreed that it could be Lyme behind all this (all my kids have had ticks on them at different times), and at this point we should *think* about putting everyone on antibiotics and treating for Lyme/Strep. I told her we've been through enough of this, I don't need to *think* about it. So she gave us scripts for everyone for 30 days. I sure hope this works, or at least buys us some time. I guess that's the advantage of living in a town where Lyme is endemic, both docs were willing to treat without a positive test.

Thanks Stephanie for sharing your protocol! I'm glad to see things are looking up for you guys. Would you mind sharing dosage/brand for all of them? I thought I would share my own little success story. I think changing ds's diet has had a tremendous impact in his well-being. We are in a tight spot right now, because I know at least two of my kids have strep (starting prescription for everyone today). This has been going on for weeks now with me not clearing strep. But ds is doing pretty well! Just a couple of complaints about joint pain, and a minor increase in OCD (watch all h### break loose now! Please God don't let it be so!). He has more energy, seems overall happier, and his tummy is doing better too. I am still waiting to get the result of the food sensitivity testing, so he is still on a very limited diet, and it's hard to keep it up, but I would totally recommend this to anyone willing to give it a try. The funny thing is he is being super compliant, and not complaining at all about not being able to have this or that. Hopefully when I get the results back we can ease up a bit, but for now, he is totally sugar free, grain free, and dairy free. DD10 is next on my list (I can only do the "introduction" part one kid at a time since it requires a lot of cooking!) Incidentally, I recently added magnesium too, since I've heard is very important if you have Lyme (no confirmation on my kids, but just in case), so that could be another reason he is doing better. And, I finally switched to a probiotic that does not contain S. thermophilus. Guess I should have done this one thing at a time to know what is working!

I have it too (based on history of symptoms) but regular labs are negative so I'll have to the Igenex and find a doc too! I have the feeling many of my kids have it too. So overwhelming... BTW, does Dr. Jones accept insurance? We live in VA but are going to see dr. B in CT, and maybe we could at least go for a consultation, but with 8 kids, I need to stay with practitioners that will be covered.

Thanks Vickie. The doc will put everyone on abxs when Matias goes for pheresis (if not, I have enough family members willing to prescribe!). As for baby, if I do have it, it's been two years so she was exposed in utero, and nursing for now 8 months, so it'd be like closing the gate after the horse escaped. I'm thinking at least she might be getting some of my abxs through the milk? If I get a positive test (which I hope I do), I will look at her more closely, but so far she seems healthy except for that ER incident. As far as the strep test, I never did stop antibiotics, I just went in because they don't seem to be working. The doctor literaly said, "I'll put you on Ceftin and if that doesn't work, you're screwed!" Not very encouraging! I know we will get this sorted out, but it will take some time.

Thanks Lyme Mom and SF Mom! I'll see if my local doc will order the CD57 for me. I'll convince my husband to get tested too. I don't mind doing the Igenex for me but I'm wondering how acurate it would be since I have been on antibiotics (but not Lyme specific), and/or may need a cyst buster to get a positive. This is a big chinese puzzle for our family and it seems someone kicked the board and we are slowly gathering the pieces! Well, doctor said yes the throat still looks like strep, and judging by the timeline of symptoms most likely I do have Lyme and she understands a negative test does not mean you don't have it. So she put me on Ceftin for 30 days. I will probably have to seek an LLMD for myself, but it's a start. At least she mentioned some people require repeated antibiotics and if that doesn't work she has fought insurance companies to get IV abxs approved for her patients. I e-mail Dr. Latimer about the whole strep situation and will be taking the rest of the kids in to check for strep.

I just emailed dr. Latimer, we'll she what she says. I went to my PCP and she agreed I may still have strep even though rapid is negative. More and more I think I do have Lyme, based on symptoms which coincide very well with the timeline for the different stages. She surprised me by saying she does often treat based only on symptoms and a negative test is no reason to rule it out. However, she very much goes with CDC guidelines for treatment, which I know are not enough. She started me on Cefuroxime for 30 days, I guess that will buy me some time at least. So we'll see. She does listen and give weight to symptoms, so in a month if I don't feel better and think she may be willing to try something different. She mentioned some people do need IV abx, and how she had to fight for a patient because insurance wouldn't cover it. So I am hopeful, but will continue to pursue other leads as far as docs go.

That is a tough one... can you push it back by a couple months? I know plasmapheresis has been used for Babesia with good results but they were also targeting infection with correct antibiotics as a follow-up. Again, see what Dr. B says about your concerns of LD. -Wendy My concern was more because it seems I am not responding to antibiotics to clear strep. I am worried he'll come back home and I'll still have it even while on abxs, as it happened the first time, and now after nearly a week on Biaxin, my tonsils looks just as big, and I see the begining of a white patch!

DS also started with a tic about age 7, and he is definitely PANDAS, not Tourettes. Keep hope.

Thanks for the reply. We have some bactroban from when dd had impetigo, I'll see if it's still good. I also have an oral mouth wash an ID had prescribed for us. It's reasurring to know it's not transferred 100%! Because of PANDAS, baby has had no vaccines at all, and I'm not planning to vaccinate. And I think the Lyme thing is probably only from 2 years ago, so I'm not too concerned about Matias having congenital Lyme, but has been in scouting since he was six, and we often visited my f-i-l, and there were deer around all the time there (btw, his wife did have Lyme!), so who knows anymore. But you are right, I need to be methodic at this or I'll be wasting time, energy, and financial resources. I am hopeful about our visit to Dr. B. My only question know is what to do about plasmapheresis!

Thanks Lyme Mom and SF Mom! I'll see if my local doc will order the CD57 for me. I'll convince my husband to get tested too. I don't mind doing the Igenex for me but I'm wondering how acurate it would be since I have been on antibiotics (but not Lyme specific), and/or may need a cyst buster to get a positive. This is a big chinese puzzle for our family and it seems someone kicked the board and we are slowly gathering the pieces!

Oh I can totally see what you are saying. The moment when all those title things add up to something that is way off. I had noticed so many little things on ds which I thought were totally unrelated. To have a doctor tell me on the first visit it's all strep related totally blew me away! I think one should focus on the strep (or other infection/virus) connection. When my oldest kids were little, I didn't run to the doctor every time they had a sore throat (plus my kids don't show symptoms anyway). If had known then, and taken him in for a strep test, if my pediatrician had known (I did taken him repeateadly for stuttering, eye-blinking, swollen joints off and on, noise sensitivity off and on, and no one thought of connecting it all) we could have caught this so much earlier!!! I don't blame myself too much, he seemed like a happy and healthy little guy (although you wouldn't say that by what his tonsils looked like when they came out!) but I am mad at the docs who dismissed all these symptoms. Of course the second time around is soooo different. DD only has the mental stuff, no tics or anything that stands out. It would be impossible to make a connection unless you knew what you are looking for. Thank God now we know, and hopefully can catch it early.

So I'm pretty concerned I might have LD. If I do, it's been a couple of years since onset so I was pregnant with it. My baby is perfectly healthy and happy, thank God. A couple of months ago she developed a fever out of nowhere and her fontanels were swollen so we wound up at the ER (by the time we got there her fever was 103.5) with spinal tap and all. It was ruled viral and she recovered in a few days. But now I'm reading that Lyme can cause encephalitis (coincidentally the same dx code some neurologists use for PANDAS!), and I guess what my daughter had was viral encephalitis? It's water under the bridge now and she seems perfectly fine. But I was wondering if the hospital might have kept the spinal fluid. There is no way I would put her through that to test for Lyme, but if they still have it, could I have that tested? It would answer a lot of questions for us. And also, if she did have LD, wouldn't it have shown at the hospital when they tested for infection? Thanks! Isabel

Yes, please do pm me! I found an pediatric infectious disease specialist who treats Lyme and is in-network. I don't know that I would call him an LLMD but it's a start. I've ordered to Igenex kits to have on hand.

My problem is now I cannot be sure I'm clear even while on antibiotics!