philamom

kmom- so sorry for your lost! I've been thinking about you. Hopefully this is just a temporary flair from the illness.

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Can you pm me this doctor's name to? Thanks. Kerry just pm'd you

You might want to pm LLM for the name of her LLMD. He would be a better doctor in treating KPU and is still in the CT area. I don't feel the doctor you mentioned would be helpful if you are looking for a more intergrative approach. Both are excellent doctors though. edit- ok...just noticed LLM is posting.

Sounds like the referral we got from Dr. B. I left two messages with the service & never got a call back from his office. Is that normal? That is not normal. hmmm. I usually get call backs within an hour, even on Saturdays. We are an established patient, but still, never had a problem with call backs. I would call again and tell the service no one has called.

I haven't seen kmom on the forum lately. I will pm you the doctor's name.

Some co-infections can be tested by Specialty Lab, which is covered by insurance.

I agree! Skip the retest- put the expense toward a good LLMD. IND on band 83-93 is significant, at least with our LLMD.

Tap, tap, tap (me tapping my foot, with arms crossed, telling you to have her pee in the cup already! ) Short term, few weeks, probably not a big downside. But too much anything isn't a good thing. So if she's peeing zinc out of her body before her immune system gets a chance to use it, then giving CORE will help. First few weeks, the body will probably soak it up and get to some sort of equilibrium point. Beyond a few weeks, if you have KPU, then the body will happily keep sopping up the zinc et al and then start to drop metals, if those have been glommed onto (that's a medical term) in lieu of the zinc that had been missing. So you need a binder (usually lots of chlorella or DMSA or Alpha lipoic acid)to bind to the chelating metals. If you don't do this step adequately, you may stir up the metals without getting them out. But if she doesn't have KPU, then giving CORE for more than a few weeks could put other things out of whack. Zinc is an agonist to copper. Too much zinc and copper levels can get too low. The other minerals/vitamins in CORE also need to stay in balance with other minerals and vitamins. More is not always better. The goal is "just enough". Except in people with KPU (whether inherited or infection-related), their bodies have never had just enough. So the mega supplement brings a deficiency into a normal level. So you need to have her pee in the cup, tell your family not to open the jar in the fridge that's wrapped in tin foil, and do the test. Do it on a Sat/Sun and freeze the pee until you can get to FedEx on a Monday. Yes, my Pandas friends reading this - I have gone off the deep end. No longer just worried about strep. I now publicly talk about metals and detox and all the nutty lyme stuff. But DS is so much better. So I guess you stick with what works. For us, vitamins and minerals have helped far more than pex or IVIG. Who knew? Sorry to hijack the Pandas forum with this thread. Ouch! I think I just felt a kick in the @#*&. :-) I'll order the kit next week. Gee... another fun weekend to look foward too. Thanks for the explanation!!

LLM- you know this is something I plan to look into - just haven't taken that step yet. Is there a downside to taking CORE without a diagnosis of KPU? Starting very slowly.

I'm so sorry for your sadness! I can really sense the despair in your post. I suggest an appt. with Dr. B in CT. I think he would be good to help you figure this out. I'm opening up my house to you (Philly Suburb) if you would like to stop here or stay overnight. His office is another 3 hours north. SERIOUSLY! My daughter would love the company of your daughter. My daughter really looks forward to meeting other kids when shes at Dr. B's center. She loves everyone - kids with tics, compulsions, screamers - she doesn't mind - if you play with her she's happy. I would really consider another opinion! edit- I also would argue for an abx rotation or stronger dose. Zithromax at 100mg is too low.

Also, the IgG subclasses 1,2,3,4 as well as the total Serum.

HLA-DR4 gene (involvement in Lyme)- leads to an autoimmune reaction

Vitamin D Ferritin ANA Streptozyme Screen

C. Pneumoniae Cytomegalovirus Antibody CBC, Comprehensive Metabolic Panel, Hepatic Panel H. Influenzae was ran with Strep Pneumo Titers in dd

The cat scans were ordered for the sinuses only. At one point, my daughter's ENT suggested sinus surgery, but said it might not be in her best interest if we could not pinpoint the underlying cause of inflammation. Xlear saline nasal spray is what I use. They also have a kids version. It contains Xylitol, which I read may be helpful with any strep in the sinuses. Thanks for mentioning the Umka - I'll remember that next time dd has a cold.

IVIG took care of my daughter's chronic sinus issues. She really hasn't had any issues since, except the usual stuffiness with a cold. Her last "true" sinus infection that needed to be treated was in January 2010. Prior, she had numerous sinus infections since 2003. I also have evidence of this with CAT scans (before & after).

Chronic Sinusitis is also a trigger for my daughter. Unfortunately, my daughter reacts to ALL the medications that are prescribed, even the prescription nasal sprays. It's been like this for years. The only thing we can use is the saline nasal sprays.

My daughter's Comprehensive Metabolic Panel, CBC, Hepatic Function Panel were all normal. The only thing out of place is the LFT and Total Cholesterol (Low). Her WBC is 6.8 (ref range 4.5-13.5). My daughter continues to test positive for Bartonella, since last September. sptcmom- is the Apo-hepat drops and liposomal glutathione something my daughter could take with out being ART tested?

I've been sick in bed last few days with a nasty cold. Yuck! LLM- no allergy to ragweed. momcap- that's why I've been cautious about adding supplements - never sure which ones elevate the LFT's. sptcmom- unfortunately, my dd does not have good eating habits. Will eat fruits but no vegetables (raw or cooked). She does like blueberries though. My dd is 10 years old, 70lbs. I try and steer away from products that have the potential to make her queasy - we are about 90% over a severe fear of vomiting, and don't wont to go back there again. I have about 40 tablets of BioPure Chlorella Pyrenoidosa left over from when I was taking it. I forget, is it a liver detox? Daughter is on Amoxicillin, Zithromax & Minocin. Stopped weekend Tindamx early August.

Thanks Nancy. Her LLMD just called and said to stop all antibiotics for a week and retest. I forgot to ask if I should stop the supplements. The only supplement I have her on right now is Burbur from Nutramedix. Her liver functions were always slightly elevated (ranging 35-50 with Quest). This was even before treatment with abx for PANDAS/Lyme. Now her AST is 282, ALT 354. Since September 1st, she's been getting daily headaches so I've been treating with Motrin once or twice a day. She had the labs done on Sept 20th. I'm assuming the Ibuprofen caused the spike?

Can you tell me what supplements you are using for liver detox? My daughters LFT's are in the triple digits. Thank you!

Yeah!!!!