DesperateInSeattle

Thank you so much for bumping the list. I've wondered if the symptoms my DS was exhibiting could truly be called "OCD" since they don't fit the typical hand-washing compulsion. He has to repeat actions and phrases until they're "perfect" and is now making us do it too. He now requires apologies if things aren't just right and he literally can not move on, emotionally or physically until we say sorry just the right way.

I'm so sorry to hear of your struggles. We too are having a rough time. My DS who is 7 is on Zithromax and Rifampin and the full host of detox, probiotic and supplements. It is so exhausting. He recently had the Rifampin increased to double dose and like you, we've seen nothing but a worsening of symptoms. His OCD presents as perfectionism and doubt. He needs to repeat things and phrases over and over until they are "right" for him. He's bullied us into his rituals and now we can not move on until we say we're sorry. It has to be just the right way, standing in just the right place, doing just the right thing and sometimes we have to repeat actions and saying sorry until it's just right. I'm late to work now more often than I'm on time, and so far my boss has been understanding with what I'm going through, but I fear for my job. Today I had to leave early to pick him up from the child care facility because he would not come in from outside and one of the counselors had to stand with him outside until I got there. When I got there, he was outside holding on to a metal railing and would not let go until one of the counselors came out to say, "sorry". We accidentally stopped rifampin for 1 month, because I didn't realize we were supposed to refill the Rx and shortly thereafter, he had an amazing 2 weeks of "normal". His motor skills returned and his OCD was virtually gone. I would try the break from antibiotics again, but I just read that intermittent use of Rifampin can lead to dangerous allergic reactions when the antibiotic is resumed. But after reading this thread and putting 2 and 2 together, I wonder if the rifampin is not doing more harm than good. Unfortunately, our antibiotic choices are limited since he is allergic to penicillin and all the related antibiotics are out. Like you, I am worn out and at my wits end. We were supposed to go to Disney World on Saturday with him, but I'm seriously wondering if this will be possible in his current state. But not going would just crush my DD as she has really been looking forward to this trip. I don't know what to do anymore. Sorry, I'm venting and not offering any hope here.

Where are you located? We are using an ILADS doc in the NW. Apparently I can not post the Dr.'s name. The only thing with him is he charges $400/hr. with payment due at the time of visit. Our first visit was $800 and I got our insurance to cover some of his costs now. But his office won't bill insurance for you and he doesn't participate in any ins. plans. So, you'll have to work with your ins. co. for pre-approval of out of network provider. Also, he uses IGenex Labs which also does not bill ins. and all of the supplements he recommends will be an out of pocket cost.

I'm so sorry to hear of your battles. My son was diagnosed with PANDAS last December and also with Lyme's Disease in January. He's been on antibiotics since the PANDAS dx and is now on a battery of supplements as well. The ILADS doctor we see is the only one in our area. My only issue with him is that he charges $400/hr. and requires payment up front. Phone calls are charged by the minute. Fortunately, we've been able to get the insurance company to reimburse some of the cost, but the financial burden has been huge. Regarding your recent bout after coming off antibiotics, this may just be a coincidence. My son has been cycling through good weeks and bad weeks and he has been on azithromycin and rifampin regularly for months now (since Jan.) Dr. G. has him taking several supplements to help clean his system of toxins and boost neurological healing. The PANDAS doctor, whom I recommend HIGHLY, is Dr. K. (I've had to edit this post, as apparently, I should not be giving Dr.'s names). She is a wonderful caring human being, though there isn't enough of her to go around. She started us on a specific regimen for the antibiotics which is supposed to improve absorption and reduce toxicity. Our day starts at 5:30 am with a round of Strep-free Probiotics, including Saccharomyces (a beneficial yeast)and a supplement called Lumbrokinase. This helps break down the biofilm in the gut to improve absorption. 30 min. later he gets the azithromycin and rifampin (a special dose made into a capsule by a compounding pharmacy here). 1 hr. later he gets a charcoal pill to absorb the whole mess and reduce toxicity. This is followed 30 min. later by breakfast which includes Lymplus (improves lymphatic drainage), Glutathiol (Antioxidant supplement), Vitamin D, Vitamin C, Magnesium, a multivitamin, and more probiotics. He also take Itires drops (improves lymphatic drainage)3x a day and melatonin at dinner to help with sleep. Our evening repeats the morning ritual for his second dose of antibiotics of the day and we are lucky to get to bed by 10:30 pm. I also give him Methylcobalomine shots 3x/week. Needless to say we are exhausted. The only thing that keeps me going is the "Good Weeks" cycle. My son will be cheerful and loving again. His fine motor skills return and he will draw and write and play at building things. The noise sensitivity disappears as well as his stammering and repetitive actions. It's a bliss I look forward to and hopefully, will see again soon, as we are currently in a "Bad" cycle. I can only say I understand and hope your situation improves. If you can afford it, I do recommend both our Dr.s and think they are on the right track. I just wish there was an end in sight. Right now, I'm not sure how long we will have to endure this torture. I can only imagine how my 7 year old son feels when he says, "Why can't I just be normal again? Why can't I just be the way I was?"