Alternative Lab Tests

[browneyesmom]

Our Ped suggested today that we do some alternative testing for heavy metals, food sensitivities, etc. I mentioned wanting to check for MTHFR also.

 

DD12 has Strep related PANDAS and an Immune Deficiency. She has been tested multiple times for Myco P, Lyme & related (Igenex & Western Blot)... all of these are always negative.

 

I'd appreciate input on the list of what others have checked, please?

 

TIA!

[LNN]

I can't give you a comprehensive answer - there are a lot of things we never looked into, like food allergies. But there's one thing I'm incredibly glad we tested for and that was pyroluria - a zinc/B6 deficiency that can only be detected thru a urine test. A few members have found this issue and treating made a significant difference for my son (less so for my daughter). I can send you background info and test info if you're interested.

 

As for metals - lots of debate on how reliable the tests are. Heavy metals generally do no stay in the blood for more than a few hours/days after exposure. So blood tests won't reveal long term issues.

 

The metals then settle into soft tissue - liver and brain are favorite spots. Because the liver is the hepa filter of the body, lots of toxic stuff builds up there. If you have infection or methylation issues that reduce your ability to detox, even more toxins build up. The other organ that does a lot of detox is the kidneys, which is why urine tests are often used for metals testing (tho my understanding is that more is generally excreted thru the bowels). There are two thoughts on urine tests. One says test a regular urine sample for baseline and then administer a metals chelator, like DMSA or EDTA or DMPS - and then collect another sample. If the chelating agent has provoked metals to come out of the soft tissue, you know you have a metals problem. The second school of thought is, save the money, skip the baseline test and just do a provocation test. If metals are there, it's the second, chelated sample that will show it. This school says any levels are bad, so who cares what baseline was. If metals show up in the chelated sample, they're there and need to be dealt with.

 

The third method is hair testing. Our doc uses urine testing so I didn't look into the pros and cons of hair testing. S&S might be able to chime in.

 

Metals freaked me out in a big way. But slowly it started to make sense and it became less frightening. We've only done a few doses of a chelator very infrequently. Other things have some up or DS was in a really good place and I didn't want/need to rock the boat. Plus treating pyroluria with zinc "naturally" helps chelate some metals by improving methylation. So we've taken that route instead. But I have web links and info on it if you go there.

 

I know your daughter is really struggling. My heart breaks for you both. When we hit wall after wall, I eventually found myself looking at the basics - things like methylation and nutrition, orthomolecular supplements of magnesium, zinc, B vitamins, and oxidative stress (reveratrol, milk thistle, alpha lipoic acid). No simple or easy answers. But if you want links on any of this stuff, let me know and I'll pass along whatever I have.

[sf_mom]

Here are a couple of other potential tests:

 

- A comprehensive stool analysis via Medametrix. Looks for yeast/fungus/parasites/inflammation/good bacteria status/enzymes. etc. in gut

 

- Fry Labs: Biofilm Test. She could be harboring many infections in biofilms that are continually releasing toxin's causing inflammation and symptoms. http://www.frylabs.com/biofilm.php

 

- Viral Panel: Via MDL http://www.mdlab.com/

Edited March 2, 2012 by SF Mom

[bulldog24]

Who was looking at the lyme test results? Can you post what it says, any .pos bands??

[minimaxwell]

Our Ped suggested today that we do some alternative testing for heavy metals, food sensitivities, etc. I mentioned wanting to check for MTHFR also.

 

DD12 has Strep related PANDAS and an Immune Deficiency. She has been tested multiple times for Myco P, Lyme & related (Igenex & Western Blot)... all of these are always negative.

 

I'd appreciate input on the list of what others have checked, please?

 

TIA!

Hi Denise,

I just had an appt with an immunologist at MGH Boston, Dr. Walter. My daughter has been along time patient of Dr. Dan Geller. She was also a patient of Dr. Michael Jenike at OCDI.

DD17 has been tested by Dr. T and we are heading to Chicago for fist lVlG with Dr. K in 2 weeks.

I am working with Dr. Geller and Dr. Jenike to form a team of Docs to treat PANDAS kids in Boston. Dr. Walter will join this team but needs lots of support. Dr. Walter ran lots more blood work, not sure what exactly ,but I will send it to you when it comes back. She also asked me to have them draw 3 red top vials before lVlG in Chicago and have them sent to her for future testing.

Do you know anything about rituximab? 2 dr.s have mentioned this to me but have not heard any other PANDAS patients talking about it.

Best,

Tiffani

[amyjoy]

Just voting on the kind of heavy metal you do - i don't believe hair is a good specimen for screening. The reason is that the metal has to be actively excreted to really show up in the hair. Most of the time, that's not exactly the case, the metal is sequestered and bonded into the cells unless there is either some kind of provocation forcing the excretion big time and over time for it to show up in the hair, or, if you happen to catch the hair sample that grew exactly following some huge exposure. And that's possible but less likely since often the exposure happens gradually over time, and the metals which are super powerful electromagnetically ("heavy") happily enter the cells and wedge themselves in there kind of like an electromagnetic parasite and live happily ever after. so to test them, you either have to go into the cell and look for them (MicroTrace Gmbh in Germany does this kind of specialized and its easy to use a labkit to get it there and is not very expensive plus it looks at intracellular mineral levels as well) OR you can use something like the DMSA challenge. The dmsa pushes the metals or attracts them, actually which is how chelation works- out of their little comfy haven and excretes them in the urine, then you do a 6hour urine collection and send a sample off of that for testing. There are several labs that do that testing, we usually use Doctor's Data and I think its under $150 still but don't quote me on that.

[amyjoy]

Also for food sensitivities it helps to look at IgE (inborn) plus IgG (developed sensitivities usually due to some kind of GI stress, malabsorption, inflammation or leaky gut but can add to the inflammatory burden and can actually go away once you heal the GI) and IgA (which are gut-based antibody responses to foods).

 

Allatesse does a great job with really good pricing on the IgE and IgA, like under $150 for something like 90 or 120 IgG foods plus 20(?) IgE foods.

for the IgA, you would need a stool or saliva test and i can't remember at this moment who does the saliva testing for that.

[patric]

Hi Tiffany,

Best of luck to you in Chicago. You are in good hands! It is a pretty boring (which was fine with me) all day procedure so bring books, computer, etc. if you catch Dr. K at Starbucks which is right next door, he will usually sit and chat ( also will chat in room). Anyway, I wish I had a list of questions to ask as I thought of them all later. If you have any questions about the area or procedure, feel free to ask. I live about 20 minutes from there. Oh, and don't forget to hydrate! By the way, the ivig helped my son tremendously!

Sharon