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.
