1tiredmama

The doctor gave 14 days of doxy. Have any of you had Dr. T. prescribe doxy for early Lyme? I'm hoping he'll prescribe the rest. BTW, I didn't even need to answer any questions about seeing the tick or about other sx of Lyme being present or not. Their office is seeing a lot of bullseyes. He said the rash was enough.

tiredmama- I really like Klaire therbiotic detox probiotic. We use it along with Culturelle and Florastor daily. philamom, where do you get that? Thanks!

Dd has a rash that seems to change by the hour. Two days ago, she showed it to me, and I thought it could be a mosquito bite with more redness than usual. I thought she'd been scratching at it too much. Today, I was alarmed because it looked like a bullseye (4.5cm.) A few hours later it looked bruised, now it looks faded. She said it looked bruised yesterday. She has had it for at least a week. There appears to be one puncture wound in the raised, red center. I'll take her to the Urgent Care tomorrow, but I'm afraid to trust any local doc. What if he says it's a spider bite? Isn't his guess as good as mine? I can't trust the standard tests. I've done some research, but there is SO much conflicting info! One site says assume lyme, another says watch for flu-like sx. One site says the rash should be >10cm, but some people get no rash--is there no in between? Some sources say no itching, some say it can itch. Oh, and one site said the bullseye can be a non-lyme reaction to a tick bite--wait, WHAT? How am I supposed to make an informed treatment decision? How can the doctor??? Dd has been relatively stable, and now she is reporting a rise in general anxiety. Any infection triggers anxiety in her. I suppose even a spider bite could. Lyme scares the heck out of me, but I don't want to jump the gun here. I need advice!!

Get tested. I carried the infection around for nearly two months thinking it was something I was eating. I felt fine, just gassy with one loose stool per day. Then, it gradually got worse. All this weeks after I had taken an abx. It turned into 4-10 loose to watery stools per day. Dh and ds came down with it at that point. They presented with an acute onset. Dh was extremely ill, but I managed to keep going to work. We tested positive. Oh, and I was using Florastor at the time. And... After treatment, I took Culterelle and Florastor, but relapsed anyway. Do not take this bug lightly.

My ds18 went through PEX and gained absolutely nothing from it. Huge disappointment for us. He is 8 months out, and no improvement. Now, I can say that you need to be very careful with the psych drugs. Ds handles them well, but dd does not. Even small doses can throw her. Good luck sorting things out. It is so hard.

Is anyone here dealing with dysautonomia? Two doctors have suggested it, we see a specialist in two weeks. My teen is having trouble regulating pulse, bp, and temp--during one appt, his temp was 96.7! Blood pools in his hands and feet. And, he's lost 55lbs in a year. Lots of other sx, too. Could this have been caused by PANDAS? What is the treatment for it?

Oh, no! I'm so sorry! You and your son have already been through so much. You are both in my thoughts. ~ HUGS ~

How are you all getting appts? Months ago, I called and sent an e-mail. No one replied. I gave up.

My ds had PEX at Georgetown in October. Dr. L. ordered it. Cigna paid for it-- after hours and hours of work and stress on our part over a 3 month time period. The total bill before insurance negotiation was $42,000. Unfortunately, our ds, who went undx'd for 14 years, experienced no improvement-- nothing at all. And, I must give you this heads- up, we got no help from the doctor's office to make it happen. Once the doctor ordered it, we found that we had to coordinate everything between the doctor's office, the hospital, and the insurance company. Each seemed to get in the way of the other, if we could get cooperation at all. Our dd was also supposed to get it. Again, no one is doing anything to get it on the books. We are not up for the fight again. Dd won't be getting PEX. That being said, I think if you are willing to pay out- of- pocket, it is much easier to get a date.

Thank you all so much for the information! I am definitely going to pursue this. I am currently playing phone tag with them. Dd wants to know one thing: How long is each daily session, and are sessions a Monday-Friday? I'd like to know if we will have to make a trip there prior to the beginning of treatment. Thanks again!

I understand that USF has an excellent intensive OCD program. I am wondering if they treat other disabling anxiety issues as well, and with the same high success rate. Dd12 has some kind of intense fear related to learning--performance anxiety maybe. She has missed a year of school, and at times, has hidden from the homebound teacher. She is currently melting down over instruction because of the anxiety it triggers. Just the mere mention of schooling causes a visible tightening of her body. I see no improvement on abx. Not a single med has been able to touch the anxiety-- tried them all! I am desperate-- she needs an education, and I see no end in sight. Do you think someone there can help us? Do they accept insurance?

I cannot answer your question, Peggy, but I can say that it makes sense to me to try an immunosuppresant for young adults with treatment-resistant PANDAS. Our next stop is a rheumatologist. I take Imuran with success and zero side- effects. I want my son to try it. Please keep us posted on your dd's progress. Kids like yours and mine will most definitely be trailblazers.

Ds 18 has been too nauseated to take two doses of his meds. He is often only awake for 12 hours on any given day. It takes about 6 hours before he can eat or drink. For weeks, he is only getting one of two doses of the Augmentin. I'm wondering if I should stop the abx all together at this time. Is 50% of the prescribed dose of any benefit? I'm also afraid to contribute to the growing issue of drug-resistent bugs. What do you think? I can't look to the prescribing doctor with my question because I will not get a response, and his next appt isn't until February.

My ds suddenly started acting just the way you describe. At the pediatrician's office he kept falling asleep. Turned out, it was mono. There were no other symptoms. I'd get him tested if I were you.