METALS, YEAST, GLUTATHIONE, PYROLURIA

[Claire]

Hello all,

 

I think we are finally getting a critical mass of people to do the certain immune tests to be able to start documenting the results to demonstrate a correlation between tics and certain immune 'assaults'.

 

B12 --totally off topic for this thread: Look at your and your child's fingernails for the white half moons. If they are gone or barely there (except for the thumb, that one tends to stick around), it is a sign of B12 deficiency. Got this from the Braintalk gluten-free thread. B12 is only absorbed sublingually, so we use Solarary B12 gum. I have found a few people with no half moons since then!

 

Unfortunately, since these posts span a long time period and I haven't been tracking it, please let me know if I missed your name or incorrectly noted your findings. I will modify the survey thread for your findings (e.g. I just added Dara to the no screens test with negative results....). There are a lot of tests, and we have a separate food sensitivity survey thread, so thread is limited to METALS, YEAST and GLUTATHIONE/ANTIOXIDANTS, and PYROLURIA. Please post whether you are POSITIVE or NEGATIVE. BOTH are very important to know if we are to get an idea of how pervasive this is. As we build more data here, it will help newcomers decide whether they should invest in the testing for their child.

 

NEWCOMERS:

There are a group of doctors called DAN doctors who do formal immune tests for Autism spectrum disorders (ASD). Though TS/tics are not considered an ASD, a number of us here have found either DAN or Environmental or other alternative doctors to run the same immune tests (be advised that an MD is usually required to order many of the tests). Although the number here taking these tests is still low, we have early 'evidence' to support the belief of some of us that certain immune issues that are common with ASD kids are also common with tic syndrome kids. It is so early in the process so time will tell how many will see reversals with treatment. Certainly for autism, the earlier treatment occurs the better the chances of reversal, so I encourage any parent that thinks this may be an issue to investigate whether testing is appropriate for your child. Certain insurance covers it, and some doesn't.

 

----------TOXIC METALS----------------------------

Okay, this section is tricky because hair tests can be good, but they are notorious for giving false negatives. Hair tests show mercury excreted through the hair, but the problem wit a large portion of these children is that they don't excrete the mercury, but retain it in their bodies. Theoretically, the urine challenge is the most accurate test, however, it can create other problems--especially children with yeast. We have threads with this discussion, it is not my goal to replicate this. Blood tests are well liked by some, but they aren't perfect either. The issue with tests is more false negative though than false positives.

 

http://www.autismwebsite.com/ari/dan/treat...ercurymetal.pdf

 

So anyone who took both a hair and blood test, or hair and urine challenge, please note if the results were different.

 

***Please POST: tests done (hair, blood, urine challenge), positive OR negative (not just positives, we are trying to understand how common this is), treatment done, how long for correction of metals, symptom reversal following correction)

 

As for treatment, that is an independent topic to debate options. Chelation is preferred by many if not most DAN doctors, but it can worsen gut issues. the recent consensus paper clearly showed that glutathione (antioxidant) lotion was part of the protocol. My personal view is that the combination of the www.spectracell.com test and the greatplainslaboratory OAT tests will show you which antioxidants (if any) are deficient and guide to to the proper supplementation for your children. The DAN paper indicated that chlorella was not effective. THis is just one resource, if others have research on metal detox to post, we have a thread--please post it. I suspect your child's doctor will have their own approach, regardless of what we post here...

 

POSITIVE FOR METALS

1.

2. Jean. Hair test negative, blood test positive for MERCURY, CADMIUM, ANTIMONY). Just uncovered in March. Treatment: Antioxidant supplementation, based on www.spectracell.com test.

3. Dara Urine Challenge positive for CADMIUM. Just uncovered in February. Current treatment is zinc.

4. NTBowen. Hair test. Negative for Mercury, positive for Aluminum, Antimony, Arsenic, Bismuth, Silver. Just uncovered, March. Treatment TBD.

5. Jennifer. Hair test? High lead and mercury? Treatment: selenium/zinc/vitaminC? Results?

6. FJ (Braintalk) Yes. started 3 month DMPS chelation in January.

7. Caz. High mercury, lead

 

Test results not yet posted.

8. Andy. Did urine challenge.

 

Negative for metals:

Laurensmom (test?)

 

-----------LOW GLUTATHIONE/ANTIOXIDANTS-----------------

5 of 6 tested Showed low glutathione on either Great Plains OAT test or www.spectracell.com antioxidant and vitamin 5000 test. Plus one with low antioxidants (unspecified in post)

 

http://www.ewg.org/reports/autism/execsumm.php

www.1whey2health.com/glutathione_brain htm

www.1whey2health.com/parkinsons_htm

 

Low glutathione (and/or antioxidants..)

1. Claire GP OAT test (Spectacell showed other antioxidants were low too, e.g. alpha lipoic acid and cysteine.) Oral supplements corrected ala and cysteine, but not Glutathione. Trying transdermal glutathione now (lotion)

2. Phyl GP OAT test

3. Susanna GP OAT test

4. Jean GP OAT test (Spectracell showed other antioxidants were low too, e.g. Coenzyme Q10 and Alpha Lipoic Acid)

5. Layne. Spectracell blood test.

6. Andy, Spectracell showed low glutathione (June 04) plus other antioxidants were low at time-- Coenzyme Q-10, Alpha Lipoic Acid. retesting recently as has been supplementing.

7. FJ low antioxidants (test?)

 

Normal glutathione

1. Dara GP OAT test(low end of normal, but normal)

 

 

----------------ELEVATED YEAST------------------------

Yeast overgrowth is controversial in the medical community and it impacts absorption, leading to vitamin deficiencies. The stool test can be negative, since yeast clumps, so it is important here to have an OAT test (Great Plains does it, and Evangelia said Metametrix does one also) or some other test. Blood tests can show allergies to yeast (RAST) or low monocytes to deal with yeast, but I have read time and again that yeast is in the gut, not the blood, so a blood test won't show it. Great Smokies and Great Plains also run stool cultures for yeast. IF they are able to get a yeast sample, these are great for identifying which anti-fungal is most effective.

 

Please post if you have done some test for yeast ordered by a practioner (including naturopaths who often use a different test from MDs), versus treating for it 'in case' or because it was likely.

 

Positive for yeast

1. Claire (GP OAT) Treatment: 12 months of trying...Diet control (highly limited sugars) Capryllic acid (didn't seem to work), Nystatin (yes reduced levels, still there), probiotics, now trying Houston Nutriceuticals No-fenol. Results: too early to say--levels are unchanged, but metal removal had temporarily raised them.

2. Dara (GP OAT) Treatment. Discovered? Treatment: Nystatin, probiotics (?) 2 weeks on/1 week off. In progress, not retested.

3. Phyl (GP OAT) Treatment: Nystatin, (Oregano oil??) results: yeast reduced, not gone, improvement in tics

4. Heather (transdermal testing??). Treatment: Threelac, Enzymes. Results: improvement in yeast and tics

5. Chemar (test method?). Capryllic acid, probiotics (via yogurt) and diet control via The yeast syndrome book?

6. Kmtatt (test method?)

 

Negative for Yeast

1. Evangelia (test?)

2. Jean (GP OAT urine)

3. Susanna (GP OAT urine)

4. Caz (CDSA stool) was negative, but kineseology showed disbiosis of the gut, so maybe still an issue

 

---------------PYROLURIA---------------------------------

Testing done via www.pyroluriatesting.com (associated with Pfeiffer) or Biocenter

Biocenter showed my son borderline, while pyroluriatesting showed him high--I think their test is less likely to show a false negative. Pfeiffer says that 10-20 is borderline and should be treated if symptoms. >20 is Positive

 

Symptoms can be poor dream recall (B6), and white spots on fingernails (low zinc), poor short term memory/attention issues

 

Since pyroluria is discussed heavily on Braintalk TS board, I added the information from people there who took the test to enhance our 'data'.

POSITIVE >20

1. Claire Positive Treatment: B6/P5P/Zinc. Results: accelerated growth.

2. Jennifer B6/P5P/Zinc. Results?

3. Nancy

4. Bean Treatment: B6/P5P/Zinc. (41)

5. Susanna (3-18)

6. FJ (Braintalk)--FJ is the one who raised this to everyone's attention on Braintalk. Her son had severe pyroluria (via Biocenter urine test). Treatment: B6/P5P/zinc/manganese. Result Complete elimination of her son's tics. She retests frequently and must manage copper levels from being too low.

7. Mable (Braintalk) (100)

8. LeLyon (Braintalk) 123

 

 

Borderline: 10-20

1. Dara--will retest (15?) biocenter

2. Robin (12) biocenter

3. Jamie (16)

 

NEGATIVE <10

1. Jean

2. IllinoisMom (Braintalk)-biocenter

3. Caz 5.5 negative

 

ZINC DEFICIENCY

After I posted this, I realized that I forgot to include Zinc Deficiency, so I started a thread there. So far 7 of 7 poster's kids had it or possible signs of it.

 

http://www.latitudes.org/forums/index.php?...?showtopic=1176

 

Best to everyone!

Claire

[Laurensmom]

Question.

 

I was told that heavy metals only show up on hair for about 3 months? Does anyone else have contrary info?

 

So far we've tested negative for Yeast, heavy metals (via urine) hypoglycemia and other conditions.

 

I plan to test for Pyroluria and Glutathione soon as well. Not sure on the metals hair test, as I don't know that it will do any good if they only show up for a short period? The only place my daughter could have been exposed to heavy metals is via green treated lumber, and we removed any and all traces of it last year.

 

Thanks

[susanna]

I just received the pyroluria test results for my sons today. We had the testing done by Direct Healthcare Access II Lab www.pyroluriatesting.com

 

My son who tics had a reading of 29.0 (High) The specimen was not frozen when received indicating that this result was on average 27% lower than what it would have been if frozen (approx 40). I also had my older son tested. He doesn't tic however I suspect he is borderline ADHD and seems to have some of the physical symptoms of the disorder. His result was 8.75. His specimen was also not frozen, so his result when corrected could be as high as 12 which would put him in the borderline category. I haven't spoken to our doctor yet to determine supplementation dosages.

 

Also, both boys had the OAT test and both tested negative for yeast. And as Claire has already mentioned both boys tested low in glutathione. We've decided to do the DMSA challenge next to test for heavy metals.

[Claire]

Thanks Susanna and Laurensmom,

 

Thanks in advance to others.

 

Laurensmom, can you please post the actual tests (lab and type)? What metal urine test--24 hour DMSA challenge, hair, blood, and which lab? What yeast test. We have had lots of people misinterpret a blood test reading to mean no yeast, e.g. negative RAST/IgE test for yeast means not allergist to yeast vs no yeast. I really appreciate your posting-- I am just trying to be as meticulous as I can in the survey given the constraints of a forum. I want to be complete when I add your input. For Susanna I already knew exactly where she tested from her past posts, so I could add hers. (Plus she named the new tests).

 

Evangelia,

I noticed I don't have it for you for yeast either. Was it the OAT test? If not, which one?

 

For all, please list lab name (unless it was your doctor doing an in-house test) and type of test...urine, stool, blood, hair, muscle testing.... if you ran two different types of tests, please list both. e.g. if two different pyroluria labs, if both hair and blood/urine metals tests. Good for all to see measurable differences if any.

 

Some discussing on metals testing here and in the DAN consensus paper in my first post on this thread.

http://www.health-truth.com/articles/mercu...ury-removal.asp

 

Claire

[kim]

Hi Dara, Claire,Laurensmom and All,

 

I have been to the Great Plains Site and I see they have:

 

1 Kryptopyrroles $40.00 when ordered with another urine test

2.Basic OAT (62 tests) $220.00

3.OAT + Yeast C&S Combo $285.00

4. Glutathione $ 75.00

5. Metals (blood 18 tests) $180.00

6.Metals Urine 36 tests $170.00

(These are the ones I think would be most beneficial?)

Dara: You posted that you ordered a test for your son without a Dr. signing an order, however the site says you need a Dr. to sign. Also, I was wondering if anyone can tell me which of these tests they ordered Basic OAT or OAT plus. etc. It appears it is cheaper to order multiples. Is the urine or blood more accurate, For metals? I am trying to get my Ped. to order these tests, I will pay (won't ask him to submit to insurance) as I think this is part of this problem. Will find a Dr. to advise when results are here . I would really like this office who acts like I'm nuts to see these results so possibly they will at least consider that there may be something to all of this, and give people a clue, so they can persue if they choose. THANK YOU ALL SO MUCH Kim

[Guest Jean]

Hi Kim,

 

Our Ped wouldn't order these tests for us. He will think we're "nuts". He believes that kids will grow out of "tics" (so as our Ped nuro.). I suggest you to find a DAN doctor in your area to order these tests. You'll need a professional guidance for the treatment (especially for heavy metals) after you get the test results.

 

I just posted my son's test results and treatment plan to the following link

http://www.latitudes.org/forums/index.php?...?showtopic=1165

 

Jean

[Caz]

HI all

 

What a good idea to summarise these results. I haven't posted for a while, things got really good for a few months, then just lately the wheels have fallen off again. I guess that is the nature of TS!

 

Our experience with Heavy Metals, also showed minimal in hair analysis. The doctor did say at the time that the patterns of high sodium, potassium with low calcium and magnesium , along with high copper suggested lots of hidden heavy metals, so we have been working on this, but after 12 months, we have recently found that we have probably only scratched the surface of this problem. My son just recently did the pre/post chelation challenge test, and for magnesium, his level pre dmsa (or dpms what ever it is called) was " not detected" then in the post, it was 46 (ref range 0 - 6) so this would suggest that he is not exreting it normally, but that there is lots there. Lead was also outside the ref range, but cadmium was ok.

 

His last hair analysis (june last year) showed lots of cadmium, so we have had success getting rid of this one I think.

 

Low Glutathione/Antioxidants We have not had this test done, but I would guess that they are low, as it is glutathione that helps eliminate heavy metals, and this is an issue.

 

Yeast CDSA showed negative, as did IGG test for candida, but a naturopathic doctor did kineseology testing (muscle testing) and this showed there was disbiosis of the gut still, so maybe still an issue.

 

Pyroluria My sons result was 5.5, so negative. Still he sometimes has white spots on nails, but we are already supplemting 60mg zinc per day anyway.

 

Thanks for the great tip of B12! I'll be checking this tomorrow.

 

Caz

[Laurensmom]

The ALLERGY tests we got were all of the IGE nature. Due to my daughters eczema, RAST is out of the question as false positives are common under such circumstances.

 

I do understand food sensitivities are DIFFERENT than all out allergies, and that there is controversy as to which tests are better etc ... however both sensitivities and allergies can and often are temporary, so I shall watch my daugher for changing patterns - instead of this or that allergy test. * I'm done testing for allergies right now, but will continue to monitor for sensitivities via behavior/tics etc. *

 

I don't understand all the tests below, but here is a list of what is noted:

 

Chem 14 panel:

 

Glucose

Bilrubin

Ketones

Serum Glutamate

Phosphorus

PRO ?

URO ?

NIT

BLO

LEU

 

And a metabolic panel:

 

Potassium

Chloride

Carbon dioxide

Calcium

Protein

Albumin

Globulin

A/G ratio

Blilrubin

Alkaline Phos

AST

ALT

TSH

Thyroxine

Triiodothyronine

Copper

Ceruloplasmin

 

I do intend to pursue a urine for the yeast (in spite of a lack of symptoms - and heavy yogurt consumption) as the doc did a blood test for yeast allergy instead?

 

I also intend to test for Pyroluria and Glutathione via urine, then I'm likely done with formal testing and on to observation and hopefully ... acceptance, which is what I really need to work on.

[Laurensmom]

Clarification:

 

I meant not to imply that helping our children is indicative of NOT accepting them.

[Claire]

I added possible zinc deficiency to this thread. I asked Pfeiffer their view on the white spots and they see a correlation, but it isn't hard and fast, and they said no correlation between number of spots and level of deficiency.

 

Claire

[Schubert]

Hi,

 

I need to know EXACTLY what type of blood test I am to ask for. My 12 year old daughter suffers terrible with tics, both vocal and motor. My Ped. will order any test, but is unfamiliar with what I am asking for. I need to have one to check to see if there are any food related allergies, any vitamin deficinies as well as any environmental factors related to her ticcing.

 

Could some please help? We have been to several doctors and she is getting so tired of no one being able to help her.

 

My e-mail is lhot1@msn.com. I told my Ped. I would call him back this p.m. 4-14-05.

 

Thank you,

Sherry

[Claire]

Schubert,

 

There are multiple tests and ways of testing, and multiple labs. These are the initial ones I recommend for ongoing tics (vs PANDAS/strep testing, for people with a sudden onset). You need an MD to order most of them. I recommend these because the vast majority of parents here who took these tests found something, so we have our own results for comparison, and these a pretty fundamental. This is not a comprehensive list, more of a starter list that should give your physician some direction.

 

BLOOD TESTS I recommend

1. www.elisaact.com --'Comprehensive Analyses' for $600 (includes environmental) or just the foods for $300.

 

Food 234 (includes GLUTEN, CASEIN and SALICYLATES!)

Environmental Chemical 60

Mold 28 (includes candida albicans)

Additive/Preservative 27

Food Coloring 14

Toxic Mineral/Metal 12 TOTAL 375 items tested

 

http://www.elisaact.com/test/pdfs/EAB_Combos_NonHP.pdf

 

2. www.spectracell.com FIA 5000 blood test for $195. It will tell you both vitamin and antioxidant deficiencies. The antioxidant deficiencies can be a 'marker' for the detox/immune issues.

 

3. Great Smokies elemental analysis for mercury, lead cadmium blood test. www.gsdl.com

 

If your doctor thinks that is too much blood at once, then do the first 2 first. The toxic metal testing can occur later, especially if the antioxidants do come back low.

 

URINE TESTS I recommend

1. Great Plains Organic Acid profile. ($180 or so) Will cover yeast overgrowth, glutathione and some other factors. www.greatplainslaboratory.com

 

2. www.pyroluriatesting.com $48. (Pyroluria commonly causes zinc and B6 deficiency, and for some reason Spectracell doesn't always pick them up, though Spectracell is a great test in general, and covers much more than zinc and B6--they just can have a big impact).

 

I hope that if you do this testing, you will report back any results. With no official studies, it is up to us parents to help eachother see the common issues.

 

Good luck. Glad you found a cooperative doctor.

 

Claire