Christianmom

Should I stop curcumin and homeopathic remedy phosphorus? Thank you.

I just received my son's kit for KPU testing from Vitamin Diagnosics. The instructions say to have him off of all medications for 48 hours before taking the urine specimen, if the doctor allows. This is not possible right now. Should I wait to have the test done until this would be OK or just go ahead and have it done while my son is on antibiotics? (He is on three--biaxin, amoxicillin, and rifampin.) I have no idea how long it will be before he can go off of antibiotics for 48 hours.

It isn't ordered for PANDAS. My son's lyme doctor ordered it. But my understanding was that it was a general test for inflammation without showing any real cause. I was shocked that it came back normal, even low. But if yours and pandas16 were normal, I guess the test is pretty meaningless. Does anyone have any idea why it isn't measuring inflammation correctly? Seems odd that the doctor would order a meaningless test.

My son, 16, just got his ESR test (inflammation) results and it was in the normal range, even low -- 3 mm/hr (0-15 is normal). I can't understand how there can be PANDAS when there is no inflammation. Yet my son isn't getting any better. Has anyone else seen this with their child? Does this mean IVIG or plasmapheresis would do no good? And why does my son regress when off antibiotics if there isn't inflammation? I would appreciate any thoughts anyone might have. (My son's CamK was 168 several months ago.)

My son, 16, just got his ESR test (inflammation) results and it was in the normal range, even low -- 3 mm/hr (0-15 is normal). I can't understand how there can be infection when there is no inflammation. Has anyone else seen this with their child?

Does anyone have any comments on my PANDAS/lyme DS16's bloodwork ordered by LLMD: Vitamin D 25 hydroxy: 25.8 ng/ml (32.0 - 100 is normal, so this number is low) Lead (blood test) -- 2 ug/DL (0-19 is normal, but this number would be considered low if he were younger) Arsenic (blood test) -- 5 ug/L (2-23 is normal) Mercury (blood test) -- none detected CBC with differential -- all values in normal range ESR 3 mm/hr (0-15 is normal. Since I think this measures inflammation, this low number surprised me.) Magnesium: 1.9 mg/dl (1.6-2.3 is normal) ASO Titer: 142 (normal)

Yes, you need a doctor's signature. You can get a test kit sent directly to you from Doctor's Data but then need a doctor to sign the order form. We did the urine heavy metals test. http://www.doctorsdata.com/test_info.asp?id=4FYI - it's a test that requires provocation with a chelating agent. Our LLMD used DMSA - which is an FDA approved chelating agent for children, but requires a doctor to prescribe (i.e. can't be prescribed by a naturopath or non-MD). Also, just be aware that this test has been criticized because it gives results of a post-chelated sample and compares them to a reference range of samples that were non-provoked. Some say "duh - most provoked samples will be higher than non-provoked ranges and lead you to assume you need chelation. The lab should compare apples to apples" Here's the full argument: http://www.quackwatch.org/01QuackeryRelatedTopics/Tests/urine_toxic.html We did the test 4 weeks ago. I spoke with another patient who sees our LLMD and he is apparently now suggesting both a pre and post-chelating test so you can compare results. It's an extra $60 to do a second test, but it seems like a good idea. My son's lyme appointment was yesterday (second one) and the doctor ordered a heavy metals blood test through LabCorp. Is that OK? He also ordered vitamin D, magnesium, sed rate by mod west, cbc with differential, aso, and complete metabolic panel (to check for liver and kidney damage from antibitoics) tests and signed for me to get the KPU test done. He added rifampin to my son's amoxicillin 2000 mg and biaxin 1000 mg. He wants to try this for two months and expects to see improvement. If there is no improvement, he seemed to be ruling out lyme as a factor in my son's illness.

Did you have to have a doctor's order for the urine tests KPU and heavy metals? And what exact test for heavy metals did you have run? Thank you.

My son overall has an excellent immune system though Dr. T did see some problems in my son's t-cell subset test that showed some immune deficiency. All of my son's other bloodwork was good. My son has never been sickly. I can't even ever remember him having a severe sore throat. Other than well visits, he had only been to the doctor once before PANDAS. He never missed school before PANDAS. Even at his worst with PANDAS last October, his overall health was very, very good. I don't know why my son has PANDAS, but his great-grandfather died of rhematic fever, so perhaps it is genetic. Or maybe he has lyme/bartonella that led to the PANDAS. That is what we are at least pursuing now. It seems worthwhile to at least try the lyme antibiotics as we used to live in a heavily wood area that we affectionally called our 100-acre wood (after Pooh Bear).

What tests would you have done from this lab? Thank you.

Did your insurance pay for any of these test you mentioned--mineral levels, heavy metals, KPU, C3a, C4a, mold markers?

I have an appointment with my son's lyme doctor on Friday. He is going to run some bloodwork (don't know what) and I am going to ask him to also order a vitamin D 25 hydroxy test as recommended by my son's homeopath. I was curious if anyone could suggest any additional vitamin deficiency type of tests that I should ask the lyme doctor to order. If anyone is interested, my son's homeopath has an e-book on vitamin D called "Here Comes the Sun: Preventing Chronic Disease with Vitamin D." Here is a link: http://www.foroptimalhealth.com/index.php?option=com_content&task=view&id=339&Itemid=4 You have to get it through him directly.

Thank you everyone for your encouraging and thoughtful comments. We are not ready by any means to give up, just discouraged--our son has been sick a long time. My son has tried three homeopathic remedies--stramonium, hyoscyamus, and phosphorus. All of the homeopathic remedies have helped my son sleep and the last one (phosphorus) noticeably affected my son's mood in a positive way. But none have helped his OCD. They only help him HANDLE his OCD better, if that makes sense. So in other words, he is now happy, well-rested and talkative, which I am grateful for, but still almost incapacitated--struggles with everything. We will be trying a new remedy on Friday. The homeopathic doctor has been wonderful. He has spent a lot of time with my son and really cares about him. He doesn't care whether my son has PANDAS or lyme, because he feel the homeopathic remedy should work no matter what the root cause. I think ultimately the homeopath may be the one who helps my son simply because he has taken him so personally. I have never seen a doctor give so much time to one patient. I am not sure how long my son has had lyme if it is truly lyme. His first signs of OCD were about age 5 and he is now 16. His real problems started a year ago. He has been on prednisone 3 times -- 5-day 60 mg. burst, 30-day 80 mg. taper, 10-day 100-mg. burst. The first time he was dramatically better for 2 days. The second time there was no change (I suppose because it was a taper and not a burst), and the third time it gave him two days of noticeable relief. We are not allowing my son to have any more prednisone. It really isn't worth it.

MomWithOCDSon and airial95, thank you for clearing that up for me.

With my son it seems like nothing can make his unwanted thoughts go away (except to distract himself with something like a baseball game). Since PANDAS/lyme causes inflammation in the brain, theoretically shouldn't behavorial therapy be of no profit? Yet it does seem to be helping PANDAS/lyme kids with OCD. Can someone explain why? And at what point in treatment do you pursue it?

Momaine -- Thank you for your response. Do you think there has been no improvement yet because my son hasn't started rifampin yet? He is only on biaxin 1000 mg. and amoxicillin 2000 mg.

Thursday will be four weeks since my son's first lyme appointment. The doctor prescribed 2000 mg of amoxicillin to be added to the 1000 mg of Biaxin that my son was already on for PANDAS. The 2000 mg of amoxicilllin was added at only 1000 mg for the first week to help with herxing. So he has been on the 2000 mg full-dose amoxicillin for three weeks on Thursday. So far my son is no better at all. He is still incapacitated for the most part. He is sleeping well and happy and talkative which have been the result of the homeopathic remedy he is also on, but his OCD is as bad as ever. Everything is a major chore--walking, dressing, eating, tying his shoe. We are discouraged to say the least. We will go back to the lyme doctor a week from Friday and he will add another antibiotic (rifampin I think). I was wondering if anyone has any thoughts. Shouldn't we have seen some improvement of some kind by now? Thank you.

Oops! I meant to say we return to the lyme doctor at the end of July (not the end of the month).

Had first appointment with lyme doctor Wednesday for my son, 16, who has severe, debilitating OCD as his only symptom. Bottom line is the doctor thinks my son has lyme and bartonella as a clinical diagnosis. My son was on biaxin 1,000 mg/day for PANDAS and the lyme doctor kept him on this and added amoxicillin 2,000 mg/day. (The first week I am only to give my son 1,000 mg. of amoxicillin to reduce herxing). When we return for our next appointment at the end of the month, the doctor wants to add rifampin to the biaxin and amoxicillin (don't know the dosage). I was wondering if anyone could tell me what herxing to expect and when--none so far (it is day 2), just his usual severe OCD. Will I see his OCD worsening as a herx? My son has never had any stomach or joint issues and is on three capsules a day of iFlora (probiotic). Also, could anyone tell me how long until there will be improvement. Will there not be improvement until he is on the rifampin? Thank you all for your help and encouragement.

Thank you so much ShaesMom, very,very helpful information. Do you mind if I ask who your doctor is? Also, do you (or anyone) have any idea why the P23 and P66 from the original western blot are no longer showing up?

Thank you so much MichaelTampa for your helpful reply! Forgot to post my son's CD57 test result. It was 100. I would appreciate anyone's comments on this as well. The test was done by Lab Corp.

I have spoken with a couple of you concerning my son, 16, and wanted to post all of his testing results in hopes of getting as much advice as possible before I see the lyme doctor on June 22. Just got IgeneX testing back--complete western blot panel, complete co-infection panel. Please note that my son has been on antibiotics (mainly Biaxin, 1000 mg.) for 7 months. Not sure if this may have affected his results. Also, my son is and has been 100% healthy and physically and mentally capable (capable of doing anything, yet his OCD keeps him from actually doing anything in a normal manner). He was diagnosed with PANDAS by Dr. T last October after sudden-onset totally-debilitating OCD and high strep titers. OCD is and has been his only symptom. A high ASO and DNase were the only signs of strep--no strep symptoms, not even a sore throat. Has never had a tick bite that I know of. Has passed every immune test given him (IgG, IgA, IgM, IgE, IgG subclasses, CBC, immune complex panel, t-cell phenotyping (found one low value out of the many tested)). Seems to be able to create antibody titers fine--ASO, anti-Dnase B. Has no fatigue, gut issues, or pain of any kind. Is the healthiest child I have--doesn't even have allergies, food or otherwise. My son has never had IVIG or plasmapheresis. Antibiotics and steroids have helped him handle his OCD a little better, but in no way have "cured him." Based on the below test results, should I ask the lyme doctor to treat my son even though the IgeneX results seem negative. And should I ask him to treat for lyme and bartonella or just lyme? What would you do? Do you think the lyme doctor will refuse to treat when he sees these results? (He is a ILADS trained doctor.) If he treats, how long until I will see results that will convince me that my son definitely has lyme/coinfections? 10/21/10 -- LabCorp Lyme Western blot: IgG P23, P66; IgM P41 2/02/11 -- LabCorp Western blot: IgG P66; IgM negative 3/10/11 -- LabCorp Western blot: IgG P66; IgM negative 3/3/11 -- LabCorp coinfection--bartonella, ehrlichia, babesia -- all negative 5/11/11 -- IGeneX Western blot: IgG P41 IND, P58+; IgM P41++, P39 IND IGeneX complete coinfection panel -- all negative Thank you!

I think the way to look at it is that it is a moral exemption. You just simply don't agree with vaccines. For your children they are wrong. I actually spoke for quite awhile with the school nurse about this with my children because I felt dishonest as well. She assured me that it was not and encouraged me to exercise my right. Glad this is an option for you too.