Christianmom

Thank you!

I have a script for several Shoemaker tests for my son. I can't find the test number for the TGF-B1 test at Labcorp or Quest (would prefer LabCorp). The "surviving mold" website has the wrong test numbers posted for both LabCorp and Quest. Can someone help? I would like to have the blood drawn tonight, if possible. Thank you.

Yes, I was aware of this. But thank you for mentioning it. My son has had Free T3, Free T4, TPO, anti-thyroglobulin and TSH tests run--all normal. But his morning body temperature is low so I am asking our naturopath to treat for hypothyroidism anyway. I know that thyroid problems can still exist even if the tests are all negative. I think, though, that 95% if Hashimoto cases can be ruled out with a negative TPO and anti-thyroglubulin.

My son recently had a C3a/C4a test run by Jewish Health. (Dr. T. ordered it at my request.) His results were C3a normal (240 -- reference range (0-940)) and C4a very high (8371 -- reference range (0-2830)). Dr. T was very surprised by these results (my son's IGENEX lyme tests were all normal) and said a positive C4a and normal C3a meant chronic lyme, mold, or other chronic infection/autoimmune disease. I have since read that the C4a can be elevated in Hashimoto's Disease (hypothyroid autoimmune condition). Dr. T told me that Dr. K had e-mailed him last week saying he was ordering this test and lots of his patients were coming back with high C4a. I was wondering if anyone who goes to Dr. K may have had this test run. If so, what were your child's results? What did Dr. K think it meant? What did he advise? Just a note, the C3a/C4a is different than a C3/C4 test. Also, the C3a/C4a test would need to have been run through Jewish Health to be acccurate. If you use Quest, they would have sent it to Jewish Health. If you use LabCorp, it is a less accurate test. My son's C3a and C4a were normal using LabCorp's test.

Just got my son's MTHFR results back and they are showing "a single copy of the C677T mutation." Results for the A1298C mutation were negative. Can anyone tell me what this means?

JuliaFaith -- Thank you so much for taking the time to explain this in such detail. What meaningful information it gives! Now if I can only put fire under Dr. T to get him to hurry and order the test.

S & S -- Thank you for responding. Do the results from the HLA DR look like the chart here: http://www.survivingmold.com/diagnosis/lab-tests If it did, what were your daughters DLB1, DQ, DLB3, DLB4, and DLB5 numbers?

I have been looking into mold tests that need to be run on my son since his c4a complement test was very high (8000 something). I am, of course, reading the "surviving mold" site for suggestions. The test they recommend that really intrigues me is the HLA DR test by LabCorp (official name "HLA DRB, DQB Disease Association"). I was wondering if anyone has had this run on their child and what the results were. Did your child show genes for mold, lyme, etc? I have even read that one of the genes shows a predisposition for hasimoto (a hypo-thyroid condition that can raise the C4a complement). That is very interesting to me because other than severe OCD, my son's only other symptoms are cold hands and feet. His morning thyroid temperature is low, though I only checked it four times. His thyroid tests are normal (all but one is back). But I know a chlid can have hashimoto and still test normal on thyroid tests. Anyway, would you mind printing your child's results here? Thank you.

Can I do ERMI testing myself, or do I need to get a professional involved? Should I wait until further mold tests (MSH, HLA, etc.) are run on my son to make sure it is mold and not lyme or something else causing the elevated c4a?

We moved to the house we are in 3 years ago. It is the newest house we have ever owned, built in 1990. It doesn't appear to have any mold issues. Basement stayed dry even through a recent hurricane. My son's sort of "strange acting" that was his first signs of OCD actually started before we moved into our current home. How do we know which home caused him to get a mold reaction? Is it possible it was our last home? Or since we moved from that home, would it have to be our current home that is causing my son's problems? Our church, however, has mold problems as the basement floods every year. Could our church be the problem? How would we know?

Thank you so much for the info. What are your son's symptoms of mold? My son's only real symptom of anything has been severe OCD. He is 100% healthy. The only other symptom he has is that he does get cold very easily when he goes outside (especially his hands)--unusually so for his age. Did your son have lyme and mold? Is it pretty common to have both? Also was wondering if you (or anyone else who's reading this) ran the visual contrast sensitivity (VCR) test through the Surviving Mold website. Wishing your son a speedy recovery too!

I just got my son's c3a/c4a test back from National Jewish Health. His C3a is normal (sorry, don't know the number) and his C4a is 8374. I was shocked as my son had the same test run through LabCorp and the results were normal. (Please, don't anyone order this test through LabCorp. It is very inferior to the Jewish Health version.) Anyway, I am not sure what the numbers mean. I read that normal C3a/high C4a can mean chronic lyme as stated here: http://conqueringthechallenge.blogspot.com/2010/06/when-complement-is-not-compliment-role.html But I also thought that c3a normal/c4a high can mean mold. If it can mean mold, can someone tell me what mold tests to order to test further for mold? I have seen Dr. Shoemaker's site, but the list is too long. Which are the important mold tests? And who do you see to treat mold? A lyme doctor? Shoemaker? My son's IGENEX test was questionable and his CD57 is 100.

Will you please let me know what you find out? Thanks.

My son has had the CBC with differential test run several times in the past year. Each time his baso# has been "0." Dr. T said this was a sign of an immune problem and that he consistently sees this in PANDAS kids (can't remember if he said he sees it in all PANDAS kids or just those with the adolscent-variant as my son has). Anyway, from what I can understand, baso# is determined by dividing (basophils (presented as a decimal)) by (# of WBC). The normal range is 0.0 to 0.3. So my son is considered in the normal range. What doesn't make sense to me is how you would ever get a number lower than 0.0 (i.e. a negative number). It seems like 0.0 is the lowest number you can get. So how can "0" be in the normal range? Also, does anyone know what a low basophil # means. My son is low-histamine and has a very low IgE (8). Thank you.

I am leary to post as I am so biased towards homeschooling. We have always homeschooled my son, and I wouldn't trade it for the world (neither would he). But I would say, if there is anyone struggling to get a PANDAS high schooler through to graduation, homeschool is truly a viable option. It is VERY easy to get a simple diploma for a high schooler through home education, even with their PANDAS, mostly because you (as their teacher) have so many options. You can truly tailor their education specifically to them. If anyone sees their child as possibly dropping out, please consider homeschooling. It would be much easier than having them try to get a GED later.

I don't have any real advice but wanted to mention that I recently tried to get a consult with Dr. Horowitz, if that's who you mean by Dr. H. He has a one-year waiting listing. Even his assistant has a 9-month wait. So you may want to at least get on his waiting list even if you cancel later.

I recently had an appointment with Dr. Elia. I would make sure she is covered by your insurance. With my insurance CHOP is in-network, but she is not. Her fees are very, very high--something like $900 for a consult. In comparison, I believe Dr. Trifiletti charges $450 for the same service. Her PANDAS experience is limited, nothing like dealing with Dr. Trifiletti or Dr. K. Also, she treats according to a sudden-onset PANDAS protocol. Otherwise she doesn't believe PANDAS exists. Unfortunately, my son does not fit the normal PANDAS protocol, so she was no help to us. Should have listened to others and saved my money.

Sorry philamom, I didn't notice it was an old post!

I think the doctors order the streptozyme test just in case the ASO or DNase do not come back elevated. I think it is just another way of hopefully finding a strep infection. The thing Dr. T told me about it was that the results are very close. In other words, a streptzyme result of 100 (negative) is very close to a reading of 200 (positive). So a 200 may be meaningless or may be significant. But a 300 or more would be significant. I believe the results jump in increments of 100. Cab40--I don't know why Dr. T isn't responding. Try calling his office. Call or e-mail every day until he responds. Try first thing in the morning as others have posted. I'm so sorry you are going through this.

I will be praying for you too. So happy for you.

I think it was about 6 months ago. Dr. T can take a long time to send scripts--sometimes a week. He is EXTREMELY busy. Trying e-mailing or calling him this afternoon. Friday afternoons are usually good for him.

cab40-- The test needs to be run through a local hospital that can "spin" the blood and must be sent to Mayo Clinic (LabCorp can't run it). Most hospitals should be familiar with how to ship blood to Mayo Clinic. Mine was. Be careful, though, about cost. Make sure your insurance will pay for it. I believe the test is not FDA approved, so I think they don't have to cover it if they don't want to. I would get preapproval if cost is an issue. My insurance tried to fight it, but in the end did pay. I think it was several hundred dollars. I did not really understand the test, but Dr. T did say it showed a slight immune deficiency. I don't know whether the results will help get IVIG or PEX covered as I am just beginning to cross that bridge--appointment with Dr. Elia on Wednesday. I'll let you know if the test results helped. But your son may very well test differently than mine away, as my son overall is not an immune deficient person. So Dr. T may find this test much more profitable for your son. So if I were you, I would check to see if it's covered. If not, ask Dr. T if he feels it's absolutely necessary. Possibly he can justify IVIG without it. It is not a test that a lot of doctors run as you can see from the responses to this thread. You are in my prayers. Hang in there. Things will get better.

Kiara -- thank you -- What lab did you use for testing. I am considering the Metametrix IgE food antibodies 30 and Metametrix IgG4 food antibodies 90. My son already tested negative on the gliaden test through Quest. And he had the Metametrix complete stool profile done which showed no signs of gluten sensitivity.

Our naturopath wants my son to try going wheat-free for 6 weeks. I have opposed our naturopath so far because the thought of it set off OCD in my son as he has OCD related to food. I was wondering if those who have gone wheat-free tested positive for a wheat allergy. Also was wondering what your child's symptoms of a wheat allergy were as my son's ONLY symptom is severe OCD. He has no stomach pain at all, even after a year of antibiotics. His overall health is excellent. Also, did going wheat-free help a little or a lot. A have the same questions for those who have gone gluten-free. Thank you. I appreciate everyone's comments so much.

We have not had much success with curcumin. We did not buy the version you mention here, but we are using top quality--Protocol for Life. I wouldn't say it isn't doing anything, but not anything that significant, as best I can tell. I think the level of inflammation in PITANDS is beyond what something like curcumin can handle. It would probably do well to replace advil, but I'm not sure it can do much more. At least that has been our experience.