All the tests that folks talk about

This was from a conversation on a list.

Great answer Cheryl. Do you have a blog entry on this? Would be a nice addition if not.

(redacted)

On daily basis, there are many tests are talked about on this mailing list and since I am a beginner with all biomed, everything sounds to me like alien. I find all this information super overwhelming and takes time to digest everything.

So here goes my questions –
– All the tests that anyone talks about, are they all suggested and ordered but you (DAN!) doctor?

Any MD/DO can order any of the labs. Some you can order yourself.

– Do you need special lab to do these tests or regular labs do these tests?

I rarely use a specialty lab. Great Plains and Doctors Data take insurance, though. I think of the specialty labs, the most important one is the CSA and OAT. Not all of the information is reliable but it’s defnitely helpful.

– How often these tests are covered by the insurance? (of course, it depends on the insurance but if you have a ‘good’ insurance, like we have Oxford)

The only test that I’ve found not to be covered is food allergy testing. IgG testing just isn’t mainstream enough. But only if the lab you see takes your insurance. I do believe you can self submit to your insurance if the lab doesn’t take it but it will be at a lower rate.

Other labs, like the non-specialty labs are usually all covered by your plan but definitely still depends on how good your coverage is.

– Is there any comprehensive list of tests somewhere up on the net those can be performed for testing and treating our kids with the explanation i.e. what this test is for and what the result means? So that I can read up on that before I approach any doctor.

Oi. That’s a lot of possible tests. But the ones to start with would be a **CSA (comp. stool analysis) and **OAT (organic acid test). **Food allergy (or you could do a food journal instead… but if you don’t, Alletess has one for $89 that you can have your doc sign off on if willing.) –these 3 are not, imo, something you need to do often. But a good place to start for a newbie to get some baselines.

viral titers: HHV1-6, any vaccine titers you want,

AntiDnase and ASO titers (PANDAS),

Ig and all subclasses,

CBC + CMP,

T&B lymph/NK cells,

homocysteine

Things to consider at some point:

**Urine Amino Acid (specialty lab – I don’t think it’s that important but if you have proten issues, could be better than nothing.)

thyroid

cortisol

other hormones (pregnenelone, progesterone, testosterone, IGF-1)

Vitamin D (bet you money you’re low! 😉 )

other vitamins and minerals (ferritin, zinc, copper, etc)

**hair metals test through GPL/DDI(or Labbio urinary porphyrins if you prefer to consider IV chelation – we do AC so hair test only – and not expensive if not covered by insurance)

**Yasko genetics test ($500/one time deal specialty lab not covered by insurance and nothing comparable in regular labs but I do believe you can get *some* of the genes through a regular lab. I think Toni might be able to tell you which ones. These are all metabolic genes.)

Toxoplasmosis

Mycoplasma

Lyme – you can get the Western Blot through a local lab but it’s not as sensitive as a specialty lab (**Igenex) which is not covered by insurance. What makes this specialty lab special is that it actually gives you parasite information for all of them and more band information. Western blot I believe only test for borrelia and the other major one that I can’t think of right now. The lyme parents can give better info on it than I can. It’s expensive, I think it’s $1800.

I marked all the specialty lab tests with a ** and really, they aren’t that many and not stuff you need to do all at once or too soon. You could easily break them up if you choose to do them.

As for how to read them…that’s steak, not popcorn*. The specialty labs will have explanations and nice little KISS charts that tell you exactly what’s going on with an explanation attached. They aren’t fully explained well but it’s a start.

The regular labs, well…it’s hard to tell a mainstream doctor that most people are low in vitamin D to even get one to test it (which I find funny that they say most people are *not* low in it but will never test anyone to know that!) And GPs tend to not understand half of the labs that cross them anyway. Any mainstream endocrinologist will tell you that the lab reference ranges for thyroid are too wide and where most GPs tell you it’s fine because it’s in range, an endocrinologist will tell you that you need thyroid. Soooo, how to read them is a loaded question. High viral titers a mainstream doctor will tell you that it just means you’ve been exposed. They don’t take anything else into consideration. It’s an impossible question to answer, unfortunately.

*For an explanation, click here. I shamelessly stole it from Patrick Rothfuss. He rocks. Buy his books, they also rock.

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New page for the biomed book!

I didn’t upload a page for the biomed book by accident.  What was I thinking?

Here it is.  It’s specifically for when you add new supps/med or therapies to keep track of what’s going on.  It’s very basic but it works.

I’ll also update the original post with the new page.

The biomed book and how to make one.

As a biomed parent, you have to be organized. If you aren’t organized, you don’t know what’s going on. And if there’s one thing you want to know, it’s what’s going on.

You must take notes. Copious notes. I’ve mentioned this before here. Let me say it again – take lots and lots of notes. Know what’s doing what, what is doing nothing and what it interacts or works well with.  Know what your kids symptoms are for yeast, bacteria, ammonia, phenols, etc.

You don’t know these things without notes.

I keep a Biomed Book. It’s got dividers and tabs and all the great things that will keep your information where you want it, at your fingertips.

Here’s a picture.
Doesn’t look like much does it? I didn’t really put any effort into making it look pretty but hey, it’s not decoration, right?

Here are all the pages for my biomed book so you don’t even have to make them. I created a Google docs page for this blog so all you need to do is click, go to file, download as, pick one and it’s all yours to modify to your needs.  I left an example on some of the pages so you know how I used it but I’m not sure if I did that for all of them.

UPDATE:  I had a bit of a snafu.  I apologize to everyone that tried to download and had to ask permission for the files.  I’ve changed them all to public so you should not have to ask for anything anymore and you definitely shouldn’t need to sign up for anything.  If there are any problems, please comment me.

Cover and divider pages – self explanatory

Dosing schedule – I use this as a daily reference for anyone that needs to know what to give.  Just flip to it and everything is there.

Medicine chart – This is to keep track of all the meds/supplements, costs, why, when, how, etc.  What was stopped, why it was stopped, what you plan to start soon and so on. This also has a lab quick check sheet.  There are certain labs I keep close track of and I don’t want to have to go to my labs section and flip through all the labs.  It’s now right there for me to scan anytime.  If I’m tracking HHV6 titers, I can just look here and see what they were for the last year and how they moved.

Phone log – Always keep track of your communications with practitioners.

UPDATE #2:  A page I neglected to upload below!


Behavior – adding/removing – Use this to keep track of behavior/changes that occur when you are adding or removing a new supp, med or therapy.

I also use sheet protectors for the dividers and in the front, I have all of our doctor’s info.

Whenever you need more lines or want to delete unused lines, it’s easy to do so.  If your needs are slightly different or you just think you can do it better – go for it.  The important thing is that it works for you and now you have an idea of how to do it if you didn’t already.

Having a book like this will be able to help your spouse in case you’re not there and will also be the how-to guide for family members should anything happen to you or your spouse.  Everything anyone needs to know about your biomed protocol is right there.

You can also keep track of all those other things I keep pestering on about, like knowing your child’s symptoms, keeping track of what’s doing what, what’s not doing anything, what needs something else to work and so on.  You get the idea.

If you have any questions, if something doesn’t make sense or you just want to know how I filled something out, drop me a comment.

Got Yeast?

I’m repeatedly asked, “How do I know if my child has yeast?”

Well, the short answer is… you don’t. At least not until you’ve learned the signs in your child. Even testing, while recommended, isn’t nearly as reliable or cost effective as simply recognizing. But even then, you might be wrong. I know, sad to hear, right?

Let me start by telling you how I learned my son’s signs of yeast. I read many accounts of what people said were yeast signs so I was already feeling like my son probably had yeast but I certainly couldn’t identify it. Let’s face it, it’s not like it’s going to come out and introduce itself to you in a polite voice that belies the hidden danger it encompasses.

I learned what yeast looks like by watching it die. When you start antifungals, you may see die off symptoms and those die off symptoms are generally the same as the actual symptoms only more extreme. In my son’s case, die off was sticking his hands in his mouth, inability to go to sleep, inability to stay asleep, hyperactivity, inattentiveness, inability to focus, slight increase in aggression and whininess. But surprise! Not all of these symptoms are exclusive to yeast. And since die off isn’t the most comfortable thing to go through, it’s not surprising that you would see some of these symptoms. So now you really need to watch your child and simply learn. I learned that as soon as his hands start going in his mouth, it means yeast. This is something that simply doesn’t happen any other time with him so I’ve easily been able to use it to identify yeast issues. When combined with waking up in the middle of the night for several hours, I then know yeast is really bad.

Night waking sucks.

My biggest suggestion in learning your child’s signs is to keep a journal if you can’t keep it straight in your head. And you’ll also find that I use this suggestion a lot when it comes to learning about your child. Keep a journal of everything from what you have started, when you started it, foods eaten, foods removed, behaviors you see and behaviors you don’t. Log everything from “nothing happened” to “the earth shook as s/he said his/her first word”. Journals will also help you keep a timeline so when you see something odd creep up, you can go back and see if you or your child did something different, forgot to do something, etc.

I’m veering off course, here, though so let’s get back on track. Yeast. Here is a collection of symptoms I’ve picked up over the years from other parents. Not all children have the same symptoms so just know that these are just possibilities. As with all things biomed, there are rarely any definitive answers for everyone.

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