momaine

I have Lyme and Bartonella and I had one spell of restless leg syndrome for about half an hour then it went away. It was when I was herxing from starting a new drug. I also have random pains in my legs and other places on my body. My PANDAS/Lyme/Bart daughter twitches a LOT. That is the only similarity.

Yikes is right! I pay $325 an hour for my dd's pediatric LLMD and $165 and hour for mine, whom I like very much. The first apt. with each was more. Dd's was just over $900 and mine was a bit over $300, I think.

Thanks Wendy. Last night she used an over the counter vaginal yeast product so I'll have to wait a little while. We also lost our family dr. so now I've got to convince a new one to listen to me. oh joy! I see Dr.'s J and B in a couple of weeks, so I can ask both of them about this too and about how she responded to the Diflucan. Lots to digest here. She does have a white tongue. She and I both have that issue despite Nystatin and sometimes using Diflucan. Hmmm,.....

That sounds like something easy to try. But now I'm confused as to what is causing the itching if her vaginal swab was negative. Does anyone know if doing a swab during your period changes the results? I asked the Dr. before we even went and she didn't know.

Wow,lots of stuff to digest, thanks. Dd is on Nystatin and I take Epicor, so I could try giving herthat. I didn't realize it helped with yeast. I called the on-call dr. and found the results of her vaginal swab. Negative for yeast and vaginitis. Not sure what that means for her except that maybe we need to go back to the dr. and discuss the other possibilities. Thanks for your help.

IF you find the right DR's, if it is PANDAS, your child can get well. You must believe that and not stop until you find the right help. Some kids get back to 100% with just the right antibiotics. Others have underlying infections that need to be addressed, like Lyme Disease or immune deficiency and those things need to be addressed to get well. Kids who aren't resonsive enough to antibiotics go on to have IVIG or Plasma Exchange and then get well. Some kids have complicated cases and it takes a while to figure out all that is wrong, that is why it is imperative to have a dr. that knows what to look for and how to treat it. A PANDAS specialist is imperative. What makes someone a pandas specialist is an open mind and experience in seeing kids get well after treating the right infections/underlying causes. Unfortunately, they are few and far between and most of us travel a good distance to see one. I drive 6 hour but other people must fly to see them. It's unfortunate, but you are in the early stages of figuring this out so you are WAY ahead of some of us whose kids have been sick much longer before we figued it out. Best of luck to you.

Hi guys, DD was on Diflucan the first year she was on antibiotics. Her liver enzymes crept up a little, but were still very close to normal, however, one of her dr.'s wanted her to try to go without it because it isn't great for the liver, so she stopoped it around 6 months ago. Dd is 14 and even though she did well off the diflucan for a while, as she started to get itchy in the genitals again, she didn't tell me right off and just kept putting on over the counter stuff. (but not treating internally) When we finally ran out of cream and she had to ask for more (I had had some on hand) she finally told me that it had been going on for a while. So, I called one of her dr.'s and he prescribed a month of Diflucan. It seemed like she herxed for two weeks then she got better than she had been in FORVEVER. It didn't last any longer than the prescription for Diflucan. As soon as the diflucan ran out, she was itchy again. The dr. didn't want to prescribe more unless it was confirmed in a lab that she had yeast. I took her to our local dr. (ours just quit and we had to use another at the clinic) She cultured her. (not pleasant for a 14 yo) and sent it in. She didn't know how long it would take to get it back. It's been 4 days so I called the lab and they haven't found any evidence that the test was even ordered. It's Saturday and dd is itchy. I am going to buy her a vaginal suppository that treats yeast this morning but I am frustrated. I can't call till Monday to find out what happened to it. Has anyone with a dd managed to stay off Diflucan and not get yeast issues on all these antibiotics? Has anyone had liver problems from staying on Diflucan for a long time? (how long?) Has anyone had a child herx from starting diflucan? Last night she told me she sometimes gets red spots on the outside of her gentitals. (in her pubic hair area) Could that be from yeast too? She has NEVER been sexually active in ANY way, I know for certain.

Well, my PANDAS kid isn't musical at all. But math comes pretty easily to her, as it did for me and her dad. I think that the parents of children who figure out that their kids have pandas are intelligent people with drive who don't give up easily. It makes sense that the apple wouldn't fall far from the tree. I think that is certainly one reason why pandas kids seem to be an intelligent lot. They come from intelligent parents. People who aren't thinking outside the box aren't going to figure out their kids have this rarely diagnosed disorder.

I was talking to a woman who has treated herself for cancer and when I mentioned lyme disease she said that people with cancer and lyme can benefit from Beta Glucan. I found this on-line. http://www.chroniclymedisease.com/beta-glucan It sounds promising. Has anyone ever used it. Know anything about it?

Twice I've woken up and noticed horrible build up on my teeth like that. It can be scraped off by a hygenist or a sharp instrument. I'm not sure why, but antibiotics can cause a lot of plaque at times. I'm very careful now to brush and floss really well and when I have build up, I scrape it off at times with something sort of sharp. (my hygenist would probably cringe to read that) Plus I use a whitening mouth wash which does seem to help with the color of my teeth. It really freaked me out when I saw it but when I talked to my hygentist, she told me it does usually come off. There are some antibiotics that kids with develping teeth shouldn't have. I think Doxy might be one.

Assuming you are addressing the infections, this is what I have tried. Maybe something will be of use to you. My dd has fewer compulsions downstairs, so I didn't make her sleep in her room. When she felt more capable of it she tried again. She spent MONTHS on the couch on more than one occasion. We tried Melatonin and it helped if she wasn't in a horrible exacerbation. But when it was taking her hours to settle down and finally get to sleep, I finally broke down and asked my dr. about prescription options. One was a sleeping medication but it was expensive ($60 co pay) and I wasn't sure it would work anyway. I chose not to pay that price but instead tried a prescription of a mild sedative called Ativan. Now, while it didn't stop the compulsions all together, it did make her sleepy enough that she would fall asleep on the couch watching TV even though she may not have felt like she finished all the compulsions she had the urge to do. She didn't feel like it reduced her anxiety a whole lot but the sedative effect was just enough to help her quiet down. We only ended up using about 15 pills out of a 30 day script and then she was able to deal with it again on her own without it being quite so anxiety provoking. We only used .5mg. I would do it again in a heart beat. It's not something you want your kid to take every day, but it seemed to get her out of a rut she was stuck in with bedtime compulsions. It can be addictive so we didn't use it every night, but just on the worst ones. I don't meant to push drugs, but I was to the point that I felt I had to DO SOMETHING instead of watching her suffer. We have some on hand if we ever need it again. I'm hoping its a thing of the past though.

My dd's tics were much more subtle, (more of a grimmace and a tsk vocal tic) but if I had to guess, I would say, yes, that is a tic. She doesn't look aware that she is even doing it. She seems focused on the TV or something. I realize that this is the Tourette's forum, but I want you to be aware that sometimes tics are caused by PANDAS (from Strep), PITAND (other infection), or Lyme Disease and its co-infections. You may want to think about any other symptoms or exposure possibilities that might relate to one of these infectious causes. It would be a good thing to rule out. Lymne Literate doctors are good at finding these infections. My dd started with OCD and eventually had vocal and motor tics. She was initially diagnosed with PANDAS then after a year of treatment that didn't get her where I felt she should be, we pursued the possibility of LYme. She is now doing very well on Lyme treatment. Best of luck to you Your dd is beautiful btw.

What a sense of relief you must feel! I have to begin interviewing new GP's since ours just quit. I don't know how I am going to find someone as open minded. I am dreading it.

I would be concerned based on his symptoms and those Igenex results. Also, wanted to mention that we believe my dd developed her allergies after she got lyme disease. (looking back) She also failed all those strep pneumonia titers which means, I believe, that she is selectively immune deficient. All this happened as a result of untreated lyme. Lyme can really derail the immune system.

So at this point you have done nothing to treat possible cysts? I would think trying Tindamax might be a next logical step or treating more aggresively for Bartonellla which often tests negative due to insensitive testing, as I'm sure you know. The OCD/anxiety could be a result of Bart. One things I've read and experienced about Bart is that it reacts quickly to antibiotics. I felt better quickly when starting antibiotics and feel worse immediately when I skip them.

Be easy on yourself; this is an amazingly frustrating disorder to live with and even the best parents can lose it sometimes. It may still be PANDAS stuff you are dealing with even if he is better in many ways. My dd, who is doing much better, is still often rigid in her attitude and her inflexibility. She is occasionally still argumentative and difficult to deal with. I can tell its the pandas when I can't reason with her because normally, she is a very reasonable person. When I lose it with my dd and finally come back to my senses, I am the first to appologize and let her know I'll try to do better. It's hard to sort out the difference between the kid you know is in there and the kid you have as a result of this horrible disorder. Hang in there and be kind to yourself. Sleep deprivation sucks. Can you nap at all?

Andrea, Just wanted to let you know not to give up too early if he seems to herx forever. (and I've found Glutathione to help with detox) My dd worsened initially and did not show progress for a full 16 weeks but now she is doing very well. She has continued to progress for the last 10 weeks. (knock on wood that it lasts) I'm having a small anxiety attack because we forgot meds one morning a few days ago and she has shown slight worsening for a couple of days, but hoping its just a tiny blip on the radar screen. Best of luck to you!

you might want to see an LLMD and rule out Lyme Disease. It can cause Tics, ADHD, and fogginess in thinking. LYme can look just like PANDAS, which, btw, is a clinical diagnosis and there are no tests that prove one way or the other that one has pandas. (can have no elevated titers) Could you do a trial of the antibiotics that tend to help PANDAS/Lyme and see what his response to them are? Augmentin or Zithromax.

I have had to give my dd (and myself) a break from antibiotics for a day or two a few times as the herxing was just too bad and lasting too long. The break (even 24 hours of no meds) made a huge difference. She would begin to improve right off, which also helped me to understand that she was indeed herxing. Unfortunately, my dd herxed significantly for 12 weeks straight. Those breaks we took let me feel confident it was a herx. Also, one supplement my llmd suggested, which I've noticed a definite improvement from, is Glutathione. Both dd and I take 500mg once per day. I ran out at one point and over the course of the next few weeks, dd worsened. When I started it up again, she improved again in just a few days. I won't let that one run out again. Nothing else she's done has made such an obvious difference. I am sorry to hear your son is struggling so much right now. I can say that SSRI's have helped my dd despite PANDAS/lyme/bartonella. We have had them prescribed by our famly doctor who is very open minded. (who just quit, I'd sad to say) I know that it complicates the big picture, but I felt I had to do something because she was struggling so much. She just wanted to die. We've used zoloft, way back before pandas diagnosis, and now she takes Celexa. 20mg helped. 40mg seemed to help a bit more. 60mg and she got worse. We are back at 40mg, and hoping that if she continues to improve, that we can go off it in the near future.

Sensory issues were definitely some of my dd's first pandas symptoms. They were some of the first issues to resolve once she started antibitics. Haven't even thought of them in a long time now.

Your symptoms (except for the migraines) are identical to mine. I also felt like I am/was 145 years old. I would never have figured out I had lyme/bart except that my dd has it and I read so much about it. I am in month 5 (I think) of treatment and on the good days I am SO MUCH BETTER. The herxing still kills me at times but I am so glad I started treatment. I really felt like I had the beginnings of alzheimers (sp). It was scary! My mind is back to almost 100% except on bad herxing days. My feet are much better but still have a ways to go. After starting treatment and beginning to feel better, I realized how much muslce pain I was experiencing on a daily basis. You get used to pain when it comes on slowly and is always there. I had forgotten what it felt like to feel good.

Your dd sounds a lot like my dd was at one point. She was completely incapacitated by her ocd. It has taken multiple IVIG's and also lyme/bartonella treatment to get her back. Although she was negative for lyme and bart, her test shows exposure to lyme and her dr. (and I)feels strongly that she has both, esp. based on her response to treatment. I did not think, two years ago, that she would ever be able to live independently. She is 14 and just got her first job at a store making pizza and sandwhiches. Despite a blip here and there, she is doing fantastic, as of late. (knock on wood) I don't know your whole story but if PANDAS treatment alone doesn't work, maybe a trip to an LLMD might shed some light things. After reading extensively about LYme/bart, I came to the realization that I have it too. Treatment has cemented that in my mind. When I'm better, I'm so much better. When I'm herxing, I feel horrible. Those things don't happen to ppl who aren't struggling with the diseases. Keep working at getting her to 100%. It is possible. It just takes figuring it all out a little at a time. And mostly it takes time......hang in there.

my dd is a complicated case, but she's had 7 high dose IVIG's to date and no end in near sight. We started as classic SEVERE pandas case (but with no elevated titers) 1st ivig was miraculous 70% remission. 2nd one got her a little closer to baseline, maybe 80% even while dealing with a sinus infection. 3rd, not so much, another sinus infection. 4th no help...figured out the lyme/bart piece around that time. 5th was at the beginning of lyme treatment and we did not see any obvious benefits and in fact, much herxing. 6th we saw moderate improvement again. 7th after a rough week or two we've seen more improvement which seems to be slow and steady at this time. We are due again in less than a month. I am feeling so hopeful at this point. Seeing my sweet normal daughter again for the better part of each day. she just got her first job working in a pizza/sandwich shop at a local store. I am SO excited to see her beginning to live a normal life again.

I don't think so. He has no symptoms of anything. Nothing at all, except the OCD, moods and tics. he is on a treatment dose of abx already so can't really increase. I am wondering if he was exposed to strep and I just don't know it. He is out of camp and we are home all next week so we are going to focus on rest and calming him down a bit. School starts in two weeks and we have a treatment next week. I will focus on detoxing as well, then see where we stand. The antibiotics have never seemed to make a different in his symptoms either. And we have tried three kinds and combinations even. I do feel we are trying what we can if it is just PANDAS. It might be telling if he doesn't improve after this 3rd, so then I will look at other infections. THough I think Dr. B really does look at co-infections, at least he seemed to order a lot of tests. I will research it further, however. Thank you!! A good LLMD will be able to sort out infections based on symptoms and exposure, despite possible negative test results. As you know, these tests aren't very sensitive and can be false negatives. I've no regrets in adding an LLMD to our team, despite the costs. I only wish I'd done it sooner.

Thanks for sharing....my dd too, is slowly...responding to lyme/bart treatment!