momaine

Hi, Actually, I should have stated that my daughter has been clinically diagnosed with Bartonella. Her test was negative (through Specialty labs, I think) but her dr. still thinks she has it, is treating her for it, and YES, she is responding to treatment. Initially, she worsened considerably....and really struggled from week 4 to week 16,(horrible herx, which I saw as a good sign) but she's been slowly improving since then. (knock on wood) She is finally almost back to where she was after her initial 2 ivig's...when we didn't know she had Lyme and were treating for only pandas. (after that she back slid) I also am being treated for Lyme/Bartonella (based on symptoms and one specific lyme band that was positive)and based on how I've responded to treatment, I feel VERY confident that we are treating the right infections, which also gives me more confidence in my daughter's diagnosis. I am so happy to be able to share with you all that my daughter is really doing fantastic right now. I just hope like ###### it lasts. I think it will still wax and wane as she heals, but I'm hoping that her baseline continues to change for the positive. Absolutely yes! My dd who has lyme/bartonella had the following symptoms in order of severity: OCD, ADD, vocal and motor tics, completely unable to write/read due to ocd so can't track hand writing ability. Classic symptoms. Also urinary frequency (one bed wetting episode when first infected)

Absolutely yes! My dd who has lyme/bartonella had the following symptoms in order of severity: OCD, ADD, vocal and motor tics, completely unable to write/read due to ocd so can't track hand writing ability. Classic symptoms. Also urinary frequency (one bed wetting episode when first infected)

I tear up every time I read something like this. I am so happy for you and wish your dd continued recovery! yay!

Most like 2 (i voted, but it said I already voted? not sure if I accidentally clicked the wrong one somehow) but we are also dealing with lyme and co-infection.

I wish there were an easy answer. There isn't. My dd is on psych drugs because I felt that if there were something out there that would help her, then why the heck not. She was suffering SO MUCH. I am not sad that we tried them and for her, they help. It didn't give her total relief from OCD by any means, but it did take the edge off the OCD. 40mg Celexa right now. went to 20mg successfully at one point but went back up when she struggled more after starting lyme treatment. I also have Ativan on hand for nights when she can't sleep. It helps her settle down. Just .5mg It's not to be used regularly because they can become addicted to it, but I'll tell you it was a life saver when she was mad enough to think about killing herself because she was so aggravated with the ritual she had to do at bedtime.

We need a "like" button! I feel exactly the same way. I wish I lived closer to Dr. B's office as I would volunteer there and try to be supportive to the parents who are still overwhelmed. I look forward to my child's full recovery so I can work to help others. No one should have to go through this alone! I love my cyber family on this forum. Not sure what I'd do without you all.

I wouldn't want to put words in anyone's mouth, but my guess would be that he meant too late for antibiotics alone to fix the problem. Maybe he would then need IVIG. I can tell you from experience, that Dr. B will not give up on any of these kids. He certainly couldn't mean too late to get well. He just doesn't think that way, in my experience.

Dawn, I'm not very good at keeping track of everyone on here, but I'd love it if you kept me in the loop wrt your child's treatment and improvement. You can pm me if you want to. I can give you my email too.

By negative do you mean NO bands either IgG or IgM with an Igenex test came up showing exposure? All coinfections were negative too?

Nothing to help you really, other than to say that both my dd and myself have/had temperature issues. Mine resoloved when I started Doxy for Lyme. Dd is still cold much of the time, but not as severe as I felt I was.

I hear your pain Wilma. Unfortunately, it just takes trial and error. Does Advil help her at all? That might be an alternative you could use for a while. My dd is in a tolerable place right now but it wan't long ago that she was really really struggling. The cyclical nature of this is difficult to deal with. They seem better, then worse, then better, then worse...its enough to drive us all crazy. I hope you find something to help. Even if its just a crutch to get her through a few months till her lyme/bartonella bacterial load is reduced. I wish it were a quicker fix for these kiddos. Unfortunatley, its' not.

I'm very happy to hear that they are considering and testing for these infections as a cause for PITAND/PANDAS but I do want to point out that it is still beneficial to see a good LLMD if you suspect Lyme at all. Lab results can be negative for various reaasons but a good LLMD is still willing to try treating (and see how the patient responds) if they feel that the symptoms and possible exposure look like Lyme or co-infections.

Sorry to hear your dd is struggling so badly. Two things I want to mention....my dd ticced worse in front of the tv because her mind wasn't as busy. If she was busy, she didn't tic as much. When she was particularly anxious, she'd watch tv and tic like crazy. Because so many people whose kids have PANDAS have figured out they are dealing with Lyme (me included), my next step, if I were you would be to seek out an LLMD and rule that in or out. Best of luck to you.

It really depends on the child. My dd who has PANDAS/PITAND and has been clinically diagnosed with Lyme and bartonella does begin to decline after about 7 weeks post IVIG. I wish that most of these kids got IVIG once and were fine, but I'm not seeing that pattern on this forum. Also, once a day Ammox isn't enough to keep a child from getting another infection. I'm curious if they did a thorough evalutaion for Lyme on the kids in this study? (Igenex)

Dd takes 500mg of Glutathione in the a.m. She takes it with food and all her other meds/supplements. I hadn't heard about taking it on an empty stomach. When she takes Activated Charcoal, she takes ten capsules at least 2 hours away from all drugs.

Wilma, SSRI's have helped my dd. She has Lyme/Bartonella/PITAND. Initially Zoloft helped. It only seemed to stop helping when she had a huge exacerbation. (which was when we discovered PANDAS/PITAND) In hind site, I don't think it stopped helping, it just didn't help enough. We then switched to Celexa and had some benefit from that as well.

don't have time for a long post, but still continuing with regular ivig and it's been a positive experience for dd14 with lyme/bartonella/pandas.

JG's mom has some good advice. The only other thing I want to add is to not feel bad about interupting and cutting them short if they don't answer to your liking. In the past with my typical (but sensitive and a bit anxious child) I've had to stand up for her because the orthodontist began to belittle her pains/fears. She at one time told my dd that something didn't hurt that she only THOUGHT it hurt. You can't decide for someone else what hurts and what doesn't. I've asked them point blank if they would treat an adult the same way they were treating my dd and if there were some other option other than what they were doing to get to the same end result. They told me no at first until I pressed them and low and behold, there was a less stressful option for her. Go figure. They tend to want everyone to fit a particular mold but we are paying them money and they can work with us in many ways. Just don't be afraid to stand up and speak your mind.

My own LLMD recommends Glutathione for detox as well as either activated charcoal or ...the clay...i can't think of what's its called off the top of my head. I've had good luck with Glutathione for my dd. PS, she doesn't have gastrointestinal lyme though.

will pm you

Each LLMD does things a little differently but I'd say that's a good combination to start from what I've learned. It's sort of half of what my dd's is on and half of what I am on. I am on 200mg of Doxy twice per day. 300mg of Rifampin (for Bart) twice per day, and 500mg Flagyl twice a day one day a week. Flagyl kicks my ######. I am supposed to work up to 2 consecutive days a week, but I'm still at one for now. I see my LLMD on WEd. and I might try after that since I'm herxing less now. Initially, I took the Flagyl and just had a half day of fatigue. With each week that I took it, things got worse for a while, with severe nausea, fatigue and nerve pain that would last all week almost untill the next dose. Now, its much better. The last time I just had a day of nausea and fatigue. Almost no extra nerve pain. I've not heard much about nausea as a herx, but I'm convinced that is what is happening to me. It is listed on drjoneskids.com as a herx symptom. If you can't handle all three drugs yet, you can start with the ones you can handle and slowly work in the other drug. That is what my LLMD had me do to begin with. I started one, if I could handle it, I added another, when I was okay with that, I added another. When I couldn't handle two days of Flagyl, she had me back down to one. One week I could only take one of the pills and not even two, but now I can handle two as long as I have no plans on the following day and can sleep all day. I'll probably only add one pill at a time when I try to get up to two days.

I can't relate but I did want to tell you that while nausea isn't a common herx symtpom, it is listed on Dr. J's site as a herx symptom and it is one symptom that I have following Flagyl. It is getting less and less of a problem each week, so if he can stick to the regiment, as much as possible, it should ease with time, if it is a herx. Nausea is a tough symptom to live with. Mine is accompanied with severe fatigue, which is sort of a blessing, since I tend to sleep it off. And initially nerve pain which is almost completely gone 5 or 6 weeks later. It's kind of a catch 22 position to be in, you have to feel HORRIBLE in order to get better. Tell him to hang in there.

It is my understanding that any IgG bands were once IgM bands, so YES, with those results and those sympotms, I personally would want them treated. This is a funny disease. I would never have guessed I had lyme disease until I read extensively about it after I suspected my daughter had it. All my symtpoms were sort of vague and they all snuck up on me so slowly that I didn't really remember what it felt like to feel normal. Now that I am in treatment, 4 months later, on my good days I feel better than I have for as long as I can remember. My bad days are still worse than they were before I started treatment, but not substantially. I don't know when I really came down with lyme but the most irritating symptom was the heel pain and I know that started at least a year and a half before I was diagnosed. Kids shouldn't be complaining of aches and pains. I was a very active child and the only aches and pains I had were when I wiped out on my bike or something significant. It is my older dd's complaints of aches and pains that make me worry that she has lyme too, but she refused to get tested. Maybe some day....

Treatment can be difficult to get through, but know that you WILl get well and that it is worth it. Half the battle is the diagnosis and finding the right dr. The rest will come in time. Best of luck to you!

I feel a bit different about education than most main stream parents, but I thank God we were already homeschooling when PANDAS hit our home. My feeling is and always has been that children learn naturally when given the chance to learn what they are interested in, in a supportive environment. We have never pushed education onto our kids but we act as facilitators in helping them to further their interests, and they learn just fine as a side effect of this. Human beings are naturally curious. My 14 yo dd has been unable to read a book for over 2 years.(unless in the company of others) She has been unable to write much as well, except on the computer and texting. (she was severely disabled from pandas/lyme and these are things that have not completely resolved yet) So, last year, she decided to take some classes at the high school for the first time ever. She was young for her grade, having her birthday only a few days before the cutoff. She had not taken any formal classes her entire life, but had learned as a result of following her interests in a rich caring environment. She took 3 classes and during that time she missed several weeks due to leaving the state for multiple IVIG. She had the complications of migraines, ocd, tics, etc. She scored in all 3 classes in the high 80's. My point is that after two years of being unable to read and write, not having a formal education like most kids, and being somewhat disabled during the time of the classes, as well as missing quite a few, and on top of that, being bored by the end of each sememster and not really feeling like trying....she managed to do quite well. I felt confident that she was a bright kid and could fit right in, but it was nice to have it validated by having her try public school on her own terms. The school was actually happy to have her because they get tax dollars for her attendence and they were all quite nice to her. She made one good friend too. They never bitched about her attendence either. She was late a lot due to ocd. No one ever even mentioned it to me. She was registerd as a homeschooler, so it took the pressure off the school, I think. When she took the first class, I told her teachers she was ill (I had one of her teachers when I was there) and I told them a little about PANDAS, but I never formally told the school. She was in mainstream classes. I personally feel that you can "homeschool" your kids and just let them get well and they will not miss out on enough to set them back. Keep their environment rich and help them follow their interests to the best of their abilities. What more can you do? Most states make homeschooling quite easy. It's best to ask people who have homeschooled for years the easiest way to go about it. If your state has an unschooling list, they are likely to know the most relaxed teachers if you need a portfolio review or testing, like in my state. Different teachers have different educational philosophies and you can likely find one that matches your own. Dd was glad to have tried public school but at this time has no plans to go back this year.