momaine

Maybe this is an overly symplistic response to what you wrote, but if thick blood is part of the problem, wouldn't baby aspirin help. My husband, who has diabetes takes these daily because diabetics tend to have thick blood too. (I think that is what he said?)

The other day at our family phsycian's office, we discussed the fact that dd's ocd is caused by inflammation which was controlled to a large degree by steroids in the past. Of course, having Lyme Disease, steroids are a bad idea. I asked about other anti-inflammatories and she gave me the name of a couple of them to research. She didn't know off hand if they crossed the blood brain barrier. One of the drugs that she mentioned is used for rhematoid arthritis and is called Meloxicam. I googled it and it looks like it is believed that it does cross the blood brain barrier. I am interested to know if anyone has tried something besides Advil to reduce inflammation in the brain, and therefore control the ocd. I would think that would be a better scenerio than more psych drugs. What do you all think about that? I wrote to her immunologist to ask his opinion. I'll let you know what I hear.

Oh, and I just wanted to say I never waited 12 weeks after ivig for the first lyme testing. Might have waited 7 weeks or so, I can't quite remember. But the last one we did one the evening of the 1st day of IVIG. Dr. J never mentioned that being a problem??

Thank you so much! I was worried it was too much lol I feel so much better just hearing that, now if the panic woud just stop... our script don't even say am/pm so was going to ask that too... my pharmacy sucks! They were suppose to give her the 250 mg instead they gaver her the 500mg to cut in half and well my child already has big time issues and told the doc that she would not take the pills if they were big... so even when i go to cut these they are still going to be bigger than she is expecting. Oh the joys of Pandas/Lyme My 115 lb dd takes 250mg twice a day two consecutive days per week. The pharmacy can order the correct ones and will usually have them the next day. If you already brought them home, it's too late for this script, but let them know for the next one, you want the 250mg. Unfortunately, your dd will likely get pretty good at swallowing pills before this is all through. My dd used to really struggle with it, but now she can swallow handfuls at a time.

I echo Susan's response really. I'd test your child first and see what you get and get started down that road, if indeed she shows expoure. That is what I did. And then, as I learned more about Lyme and all the possible symtpoms, I later got myself tested and started treatment. I've never removed an imbedded tick from myself. And the two I remember removing from my daughter were after her symtpoms started and at least one of them was a large dog tick. No bullseye either. But our labs both showed exposure. I had a positive reaction to antibiotics right off. Dr. said my immune system must not be compromised yet and is still strong. Dd still struggling but I'm confident we're on the right path.

That is the same reason that I feel like we are on the right track with my dd. Twice we've stopped antibiotics for a day or two and pretty quickly her symptoms begin to diminish. so yes, herxes can last a really long time. It just sucks. Dr. J really wants my dd to stay at the antiiotic dose she is on despite her struggles. Part of me would like to slow down treatment. But we're hanging in there for now. The Ativan definitely helpes her get to sleep a little earlier. Last night was a Tindamax night and though it was more difficult than the past two nights since we started Ativan, it wasn't as horrible as last week and it was tollerable. It was a later night, but we started later too. Still a decent improvement. Hang in there.

I thought I'd post a quick update. Our family dr. continued the Celexa at 40mg, like I wanted. Said we could try to raise it after she'd been on it for a month. She also prescribed Ativan .5mg to use sporadically, as needed. We tried it the first night at the .5mg. Dd said it did nothing to help her anxiety, BUT, she was asleep by 10:30 and not midnight with much less complaining. Second night, same thing. Tonight is the 3rd night. I actually gave her two of the pills to see what that does. (today is a Tindamax day) She was all in a tither when we got home because no one was here to see her get out of the car. But then my neice arrived and she got in the house okay and ate dinner and took her meds. (almost 9pm) Then to the couch where she spends an inordinate amount of time. I asked her to shower so she'd be ready for school tomorrow. She said not now, 5 mins...(that never happens) 5 minutes went by and she went and showered without yelling for help at all. I did get her clothes and she got dressed with no fuss and got settled back on the couch easily. (some nights dressing can take an hour with tears and repeating) Personally, I think it's helping, a lot. While it might not be taking all anxiety away, I think it's putting a damper on it. Wish I could give her bucket loads of it. ;P Tomorrow she has company coming for the night so I'll skip it. Today and tomorrow are Tindamax days so the next 3 days are usually ######. we'll see what happens. I'm pleased so far.

Despite all the difficulties, I'm a definite YES too, for both my daughter and myself. I firmly believe we are on the right path but it is a very difficult road, I'm sorry to say.

My dd's worst symtpoms (OCD, but I think-pretty sure its herxing) are always at night. I hate it because that is when I'm also less patient. Hers seems fairly constant, well worse after Tindamax, but just begins to recover when its time to take more...but my own herxing cycles like that. I'll have several good days, then a bad one here and there, maybe once a week or so. For me, I get fevers, brain fog, my heels hurt more, etc. My daughter only gets worse ocd.

I meant to ask, when did you start Lyme/bartonella treatment? I asked Dr. J to give me a worst case scenerio timewise, before we see improvement and he said 6 months, even though he seemed like he'd rather not answer. We are half way to six months. Some days just feel hopeless, like its never going to happen. Dr. J made me read his sign that says, BELIEVE. A patient got it for him. THe child got well and said to dr. J that he needs to just tell all his kids to BELIEVE and they will get well. I want to, I really do.

Gosh, we are in the same boat. I wish I had some words of wisdom or an uplifting story. I don't. Twice we've done a day or two break from antibiotics and because her OCD lessened right after the break, it leads us to believe that indeed, the worsening of OCD is a herx, depsite not really having other symptoms, except the rashes when she showers. We just saw Dr. J last week and he suggested possibly getting Plasmapherisis and to ask Dr. B about it. Dr. B didn't think we were in a spot to need it quite yet, but because we had a friend with us, I don't think we did a very good job explaining just how miserable she is when there are no friends around. Dr. J also recommended we find a psychiatrist and try adding some neuropsych meds. We see our family Dr. tomorrow and we'll see what she can do. If not, maybe we'll look for a psychiatrist. I really hate the idea of explaining all this to another dr. (esp. a non-believer) We just can't keep going on like this. Dr. J really didn't want to back off on antibiotics though. Dd did just get 1.7g/kg of IVIG. Maybe that will help. Dr. B was hopeful that it would. Hang in there.

Susan, Is your dd on the Lorzepam daily or just as needed? (can you do that) We've never tried an anxiety reducer that you take as needed but I'm thinking that may be a good thing. Tomorrow's apt. can't come soon enough.

We've tried Melatonin, which helps when she's not this bad off, but doesn't right now. We're going to try 75mg of Benedryl tonight and see what that gets us. Haven't heard of 5 htp. I'll look it up. And though I've tried Valerian root with success, I haven't given it to my dd. I figured it wasn't strong enough. Maybe I'll pick some up and try the combination though. Thanks. This sucks! Sleep is the one thing we can't do without. I hope we live through this.

We're really in a bad place. Have a dr. apt. Tuesday to talk about OCD drugs. In the meantime, dd can't sleep due to ocd issues of needing to repeat things, so she doens't let herself sleep unless she has a friend over. We have a script for Lunesta, but not only is it very expensive, I'm not sure it'll work if she doesn't allow herself to go to sleep. Two Benedryl don't do the trick. She'll be exhausted, barely keeping her eyes open, and still stay awake. Do you think Lunesta would be any different? Our insurance will only give us 1 pill per night and that is still $60 per month. I don't want to spend the money if its not going to help anyway.

Wishing you all a day filled with peace and healing. Thanks for being here to share your stories. Much love to all.

The sad, crying depressed, tired could certainly be a herx. I was exhausted when I first started Doxy and sort of down, too. My lips are also really chapped from the sun while on Doxy. I've been putting a lip balm with sun screen in it on them and trying really hard to stay out of the sun.

I had a bigger herx on Augmentin than on Doxy, but I couldn't keep taking Augmentin due to an allergy. However, the constant dose of 400mg of Doxy per day has really helped me a lot. My short term memory seems to be better 90% of the time. My fatigue is mostly gone, most of the time. The feeling of pressure around my eyes and feeling like I've overslept is gone maybe 50% of the time. My heels are probably 70% better. And my body temperature is back to normal about six days a week. On the 7th day, I usually get a fever and am freezing. When I wake up the next day, I'm fine again though. My stomach has been fine on the doxy but I'm super super sensitive to the sun and I can't even go outside with a hat and sunblock 30 on without getting a reaction. I can feel my skin burning in the sun. I've heard that you get used to Doxy if you keep taking it. I hope it works for you or maybe you could switch to Minocycline yourself. Minocycline is supposed to be better than doxy for neurological stuff and as good for the other lyme symptoms.

My dd has seen some benefits from celexa. She was put on it after being on Zoloft for a couple of years when the zoloft seemed to stop working. (terrible exacerbation that I think may have been due to a sinus infection- a month or two after that was diagnosed with PANDAS, rather than regular ocd) So, its not that the zoloft stopped working per se, its just that it wasn't enough during an exacerbation, but we didn't know that then. So, anyway, switched to 20mg Celexa which also seemed to help a little. Upped it to 40mg and did not see any aditional obvious improvement. After IVIG number two, many many months later, she was doing so well, we backed down to 20mg very successfully. After 7 more months and a new Lyme diagnosis and subsequent treatment that has made things worse initially, we have just raised it to 40mg again and she does feel that it has helped a little. It's been two weeks I think and we have an apt. with our family dr. who prescribed it tomorrow to talk about the dose and possibly raise it, if she thinks the time is right. Dd is really struggling right now. Trying to hang in there through the Lyme herxes that seem to never end. Not looking forward to explainging all this to the doctor.

My LLMD suggested Glutathione for my dd as a way to help with detox. The first month of Lyme treatment my dd began to improve (ocd wise) and I thought maybe we would be one of those lucky ones that didn't suffer through a terrible herx. But alas, it wasn't meant to me. Since then, she has really had some difficulties that I feel are from not detoxing fast enough. So anything you can do to help with detox should be helpful. Unfortunately, showering is one of my dd's difficult things and so she doesn't take as many hot epsom salt showers as I wish she did,but every time she does she gets a die off rash, which means its working. I find it difficult at times to decide how much better or worse she is over all, esp. when one thing is worse. Right now she can't sleep at night and being over tired doesn't help anything for either of us. Best of luck. Hope you are one of the lucky ones.

I just remembered something myself. I had written that dd was doing okay till her last ivig, but now I remember that she began to go down hill BEFORE the ivig, because we stopped antibiotics the two days of ivig per her lyme dr., to give her body a break from the herxing and she did come around a bit after stopping the antibiotics for two days. Then things returned to difficult after starting them again, so maybe for us, anyways, it has less to do with the IVIG and more to do with a huge herx that never ends. Her lyme dr. feels like she must have a large spirochetal load to be experiencing such difficulties still. She's 12 weeks into treatment. He said he hopes to see progress by 6 months after starting treatment at the outside. (sort of urged him to give me a number even though he didn't seem to want to) Tonight it is CRAZY. She cannot sleep due to OCD reasons that she is unwilling to try to explain, therefore I can't help her and no sleeping medication is going to make a difference if you don't actually take it and try to sleep. Someone just shoot me!

So, do you think that because she had a huge herx from ivig that it is helping kill off the lyme and therefore beneficial or do you feel it is too much and that you should discontinue it? I just realized in reading this, that dd's first month of lyme treatment showed progress but the last 8 weeks, since her last ivig have been terribly difficult and maybe that is from the ivig? I was more thinking it was the cyclical nature of lyme disease that made her worse. Both Dr. B and DR. J feel that IVIG is beneficial when there is autoimmunity along with Lyme. (regardless of the cause of the autoimmunity) I wish I had all the answers. I wish I could see the future.

Thanks for sharing your perspective. I'm glad to hear both sides. I guess for now, we'll hang in there and see how things go in the next few weeks. Dd's Igg wasn't where Dr. B wanted to see it so he gave her 1.7g/kg this round of IVIG. Maybe that will help with the OCD. That was his hope too.

I talked to Dr. B afterwards and although he said he could find us a doctor who could do it, he didn't feel we were in such dire straights as to do something so invasive. He also said it can't be done as a stand alone and needs to be followed with IVIG. We're hanging in there, for now. We will try a sleeping aid and see if that helps the nights of insomnia. And it seems like (not to jink myself) that the increase in Celexa from 20 to 40mg is helping a little.

I really don't want to see another out of state doctor. I'm willing to go to a private practice if I have to and pay cash as long as they don't need to see us too often. (kaching) And we are doing lots of varied things for detox, which I think help, since she gets a die off rash much more often now. But she still has severe OCD and I just feel like she needs some quality of life while she is getting better. So frustrating....wish I could fast forward in time to when she is already better.

I have such an issue with this. I am accomodating because my child is suffering due to inflammation of the brain. When she is better (inflammation is lowered) she doesn't have these OCD issues. They just go away. I don't feel like people with a pandas child should be expected to just stand back and watch their children suffer. (my dd cannot do erp when she is in an exacerbation and she's better when she's not) We went to a well known psychologist who specializes in erp with children with ocd and she is the one who pointed us toward pandas because of her innabilitiy to help her. She said to me, as long as she still has an active infection, I cannot help her. When her ocd begins to ask too much of me (I do refuse to switch lights on and off for her, etc.) I do take a stand in what I am willing to do or not do. But I do things like bring her food when she can't get off the couch seems like a no-brainer if I want her to stay healthy. what do you think?