philamom

kimballot- We share some similarities in our children's stories. I tried to pm you a question but was denied. Could you pm me? Thanks!

Yes, I also feel my child is dealing with both PANDAS & Lyme, and I'm addressing it from all angles. I watch my daughter react to strep and I listen as she complains about the constant tingling in her arms and legs, most likely from the lyme. She was in the PANDAS range on the Cunningham test with all 4 anti-neuronal titers elevated. I just want to see all of our children healed - Period!!! They don't deserve this! And sorry- I thought the original post was just asking if Igenex ever comes back negative. dandd- however your tests come back, I still hope you feel comfortable coming to this forum to seek answers, opinions, advice, exc. Hopefully, we are much kinder next time .

My assumption is she may not be strep free. How long was she on the Amox- it may not have been long enough. If she cultured positive, you may want to take her back to have her swabbed again.

My daughter gets a complete work-up every 3 months from her llmd. Lyme is known to run havoc on the endocrine system. Not sure if it's more related to girls.

Daughter (Quest): run it every 3 months - normal TSH, 3rd Generation T4 Free T3 Free T3 Reverse Myself (Quest): Same as above, plus T4 & T3 total Thyroid Peroxidase & Thyroglobulin Antibodies Estrogen LH Progesterone Prolactin Testosterone, Free and total FSH Cortisol

Ok - thanks. I wasn't sure if it was based on type of symptoms.

Can you explain to me what distinguishes "adolescent-variant" of PANDAS? Thanks.

My daughter was negative for co-infections through Igenex. We later moved on to find her positive for Bartonella with Specialty and positive for RMSF with Quest. She is positive for Bb (lyme) with Igenex.

Same here...my dd is off of abx due to elevated liver enzymes. She is very agitated & aggressive right now, and is diagnosed with Bart.

That would be great - thank you!

Sorry - I just skimmed the posts, but have you tried zithromax? I was told there is less of a chance of c-diff compared to Augmentin. My 10 yr old had c-diff twice at the age of 5 and again at age 9. We give 250+ billion cfu probiotics daily (3-4 different brands). She hasn't had any issues since increasing the probiotics.

I agree with all the above posts. Running some labs covered by insurance makes good sense. You may want to ask him if he is rushing due to some sort of anxiety, or is he competitive. My daughter is competitive and always tries to finish first. She was making some careless mistakes by rushing through her tests. We had to have a talk about how important it is to re-check your answers (twice if time allows) before handing in the test.

Same here - as soon as my dd is buckled, I'm shoving something down her throat...the car line can wait. I have the opposite - our school nurse is very cooperative and understanding of the antibiotics for lyme. She knew all about PANDAS and chronic lyme before I even mentioned it. There is a second nurse though, whom gives me the evil eye. I tried having my daughter go to the nurse for a probiotic, but like your son she felt singled out. You also run the risk of your child catching an illness...so wasn't thrilled about that. I now put a packet of probiotic in her lunch box for her to rip open and shove in her mouth. Can any of the supplements be added in the morning to food or liquid (like jello or pudding)in his lunch box, or will he only take pills? Good luck with your chart!

My daughter is a night time scratcher. When ever I check on her while she's sleeping, she's scratching. She's been on different antibiotics, including zith, and haven't seen a correlation. It used to be much worse and she would scratch during the day as well, now I just notice it during the night. No scented laundry or bath products here. Maybe it has something to do with histamine, like Dr. T mentions. But, it is much better since PANDAS/Lyme treatment. BeesKnees- I hear you about the stress! Right after learning of my daughter's lyme diagnosis, about a year ago, my face started breaking out. A few months later I finally went to the doctor (yes, us moms always put ourselves last) and was told I had rosacea. I'm sure it was triggered by stress.

Good to know -- thank you.

What a beautiful birthday present. Happy 21st!!

Did you have any luck accessing this article?

Hi Susan! I don't know if they fixed the problem but I just took the survey for myself from the same computer. I completed it the other day for my daughter. hth

Would your doctor being willing to give a trial of Augmentin or Zithromax? There is a paper that's been posted here which mentions a high failure rate in Amox for strep...maybe you could show it to your doctor. Hopefully, someone will post the link. You could also try Duricef (Cephalasporin -sp?) -- our ped uses it in her practice for strep.

My daughter had the Cunningham test in June 2009 shortly after a 5 day steroid burst. Her CamK was on the lower range of PANDAS (136) and the anti-neuronal titers were all elevated. We were told my daughter was "classic PANDAS" at the time by her treating PANDAS doctor. We later went on to find we are dealing with lyme & bart as well, and didn't see real improvement until we addressed it. My daughter still reacts to strep too. It's possible to be dealing with more than one infection. Just sharing my experience.

Beautifully put LLM! Thank you. I second that!

The fact that he responds so well to two antibiotics may be suggestive of Lyme as well. Lyme is usually treated with a combo of antibiotics, especially if one is dealing with tick-borne co-infections, like Bartonella, as well. My daughter went thru a year 1/2 of antibiotics and 3 ivig's before finding lyme. It wasn't until a combo of antibiotics were prescribed that we begun seeing the most improvement in her symptoms. I also would like to add that my daughter was plagued with numerous GI issues, including alomst daily complaints of stomach pains. When we first saw the LLMD he was pretty sure she was dealing with Bartonella because of the years of GI complaints. My daughter's tests prior to this appt. came up positive for lyme but negative for Bartonella. He ran some different tests and found Bartonella. Her GI issues went away with treatment! She is also taking a good dose of probiotics that we started prior to lyme treatment. This is just our experience -- I'm certainly not saying Lyme/co-infections is the cause of your son's problems. Best Wishes!

The fact that he responds so well to two antibiotics may be suggestive of Lyme as well. Lyme is usually treated with a combo of antibiotics, especially if one is dealing with tick-borne co-infections, like Bartonella, as well. My daughter went thru a year 1/2 of antibiotics and 3 ivig's before finding lyme. It wasn't until a combo of antibiotics were prescribed that we begun seeing the most improvement in her symptoms.

Great - thank you!

I had it done at Labcorp: Ammonia, Plasma