My Igenex WB and KPY/pyroluria

[butterflymom]

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Edited October 5, 2015 by tampicc

[SSS]

Hey- I don't know about treating KPU without testing positive for it (we had to do 2 urine tests this weekend, off of supps, I was sorry that one of them wasn't KPU)

 

I do give my dd extra Zinc- in the autism bio-med world, it is said these children are commonly very low in Zinc, and recommend 1 mg for 1 pound weight, plus 20 mg.

I don't give that much, about 45 mg total a day, she weighs 43 pounds.

It also helps low neutrophils, ours looked on the lowish side last test. I go back and forth doing this much Zinc.

B vitamins in a multi.

Not the KPU protocol, no. I did give extra B-6 years ago for some months, seemed to turn on us after awhile, stopped giving it extra.

 

I'm sure you looked up the bands on your test;

31 outer surface protein specific Bb, has cross reactivity w/viruses

39 major protein of Bb, specific for Bb

58 unknown, but may be a heat-shock Bb protein.

 

And of course, the famous band 41, flagellin protein of all spirochetes, not necessarily Lyme.

 

I tried to look up what other bacteria/infections could possibly have flagellas one time, none of it made sense. I wanted to see clearly other bacterial infections that could have these flagellas, spirochetes, all I got was a bunch of science writing, nothing was spelled out.

 

I'm am waiting for my own Igenex, but got my CD57 back, which is low, spelling chronic lyme.

But the big deal is: I have symptoms. Like, very real symptoms I've been living with, calling it many other things.

 

I'm sorry your test wasn't more clear---that is the frustrating thing.

[LNN]

If you're already considering an LLMD to pursue the lyme results, you can ask if they test for/treat KPU when you call to ask about an appt. If you would rather test first, I'd approach whoever signed off on your Igenex testing. You can download the order form here:

KPU test (form is in the upper right corner)

 

There are specific instructions not on the form if you want to follow Dr K's protocol. If you get this test thru an LLMD, he/she can provide it. If you get a GP to order it, PM me and I'll get you the details. You need to be off of vitamin/mineral supplements for 5-7 days before testing. You can stay on abx, probiotics.

 

If you decide to approach a Pandas doc or GP about this, one approach you can take is to ask for a standard lab for vitamin/mineral profile that includes zinc, copper, magnesium etc (maybe have them also check vitamin D). This "should" be a simple, non-controversial request, saying you just want to rule things out, based on your personal experiences etc. Then sneak in the KPU test and say BTW, just humor me and let me spend my $70 to do this urine test too.

 

When I went to look for other things that had flagella (band 41), I found syphilis and H Pylori. But I believe 39 and 31 are lyme specific. If symptoms are present, then it would seem you have enough suggestive evidence to consider treating.

 

oh - in regards to trying a trial on your own...I don't know that it's irresponsible in the doses you mention, for a certain period of time. My concern would be if you decided to do it longer term, I'd think having lab numbers to guide you would be a good thing. You need to periodically check copper levels when you supplement with zinc, as zinc is a copper agonist.

 

The other concern is that if the issue is KPU and not simply a deficiency (pyroleuria), then the heavy metals become a potential fall-out. If you decide to do a trial without testing for KPU, it would be wise to add chlorella into the daily schedule as a way to soak up toxins. The problem is that for KPU, you need to take 10 chlorella pills with each meal (so 30 pills/day). If you take less chlorella, you actually feel worse (more nausea) than if you take 30. So if you're looking at telling your child he needs to take 30+ pills/day, you reach a point that you probably want to have a lab result to make you feel better about making him do it. (I get to say "because Dr Tom said so" which is better than "because your mother is a paranoid nut job who spens too much time on forums!")

 

FYI - Mercola has the best quality/price ratio I've found so far.

Edited August 21, 2011 by LLM

[SSS]

Interesting LLM, I looked up the link you provided (and bookmarked it) I see the company is out of the Netherlands-

 

At our LLMD appt., he said there is a urine test he wants her to do from 'Norway' I didn't understand, but looks like this one.

 

Glad.

[LNN]

Their US location is in NJ - the fed ex to Norway would be a killer!

[SSS]

LOL, I have no idea what else could be linked to a lab in Norway (and this company actually says Netherlands)

but put a fork in me I am DONE with all this testing! Done, done, done, over it already!