From my experience with other patients of De Meirlier, we had very different expectations. I've never waited for more than a week or so for bloodwork before, and while I've had to wait awhile to see specialists before (an autonomic specialist, or a endocrinologist, for example) once you're at the doc's office, it's all over but the screaming. You get your blood drawn, results back in a week or so.
Apparently, that is not the way it works everywhere! While I waited for my results (impatiently, nervously, and, it may be said, quite vocally sorrowfully at times), I heard many times that it was quite normal to wait this long, not to worry, it will all come in time, and so on. Before we even get to the results, a few observations about DeMeirlier's process:
- It takes ages.
- He is very thorough.
- He is a pragmatist who will use mainstream, experimental, and alternative medicine without turning his nose up at any method that has promise. Expect lifestyle advice too.
- You are meant to intuit, through the use of your psychic powers, how things work. To put it more bluntly, find an old patient of DeMeirlier's and ask:
- How you're to pay for your bloodwork
- How long this typically takes
- When he'll be in the U.S. next
- When he'll be in Brussels next
- Who to contact about what
- How much an appointment costs
- How much labwork tends to cost
- How long to plan to stay in the area
- How to contact their offices
For people with an illness that is not very well understood even by experts in the field, this is pretty much the ideal methodology, so far as I am concerned. And so far as many are concerned.
Which means he and his people are run off their feet trying to see everyone who wants to see them. Do they have enough funding to do this? No, absolutely they do not, but they keep trying. They need to hire someone to just write grants for them. (Hint, hint!) Probably a better use of their meagre funds than hiring someone else full-time.
So, enough of the song and dance! Here's a bit of a recap of what it was that I was going to be tested for. I've highlighted the stuff that turned up something interesting, and will discuss each individually below.
Okay, so have you noticed that the ones I was most skeptical even mattered are all the ones that were off?He opted to test my thyroid hormones anyway, along with some other vaguely hormonal stuff:
- Free T3 (Vrij T3)
- thyroid antibodies (anti-thyreoblobuline)
- free testosterone
- Vitamin D2 & 3
- IgG only - 96 General Foods Sensitivity Test
- Proinflammatory cytokines (IL1B, IL-6, 8, and 10, IL12p70, TNF, TGF-B1, MIP-1B, MCP1)
- Perforin expression (NKC activity)
- Elastase expression (neutrophil activation)
- CD57 absolute count
- IMPH (Immunophenotyping: CD4, CD8, and CD56 determination)
- SCD14 (Soluble)
- C3A serum level
- C4A serum level
- Prostaglandin E2 serum level
- VEGF serum level
- D-lactate serum level
...this apparently tests for the rare autosomal disorder Schindler disease. There is little to no chance I have this, of course, but what the hey. Maybe because of my tiny burst blood vessels I wasn't even aware I had? This seems ridiculous.
- nagalase activity (alpha-N-acetylgalactosaminidase)
Now, from the wee beasties division:
- Aspergillus niger IgG (Black Mold)
- Mycoplasma spp. & Mycoplasma pneuomoniae (causes atypical pneumonia - not sure why this is here)
- Anaplasma phagocytophilum (A tick-borne bacterium that causes human granulocytic granoplasmosis)
- Borrelia burgdorferi sl (Lyme)
- Bartonella spp. ('cat scratch fever')
- Midichloria mitochondriii (Yes, it is named after Star Wars's midichlorians. And it lives in and eats mitchondria. Seriously, officially the scariest microorganism ever.)
- Babesia (a malaria-like parasite)
- Yersinia (can cause 'pseudo-appendicitis'... oooh.)
- Parovirus B19 (Which causes fifth disease, which sounds nothing like what I have, but he was thinking about the ruddiness of my cheeks, I suppose. Or my blush. Whichever. )
- Tularemia (a lovely suppurating illness caused usually by contact with bunnies.)
Because I noticed that.
Okay, ladies and gentlemen, from the top:
Low free testosterone:
Low free testosterone can mean a few different things.
- Your SHBG is high. Sex-hormone binding globulins 'capture' the sex hormones (testosterone, estrogen) so that they are not floating free in the bloodstream.
- Your testosterone overall is low. This is not the case for me. I have a healthy amount of testosterone, on the higher end of normal for the ladies.
Uh, no thanks.
My cholesterol levels are a bit low, and this means that all my hormone levels are a bit low. However, my free testosterone is low BEYOND low (1/20th lowest normal value), implying there's some other factor at work, there. Why is SHBG sequestering testosterone? The world may never know, beyond "this is associated with fatigue".
The results here are interesting, and probably pertinent to many people besides me.
You may have read on my 'what I do for M.E.' post that I've been gluten-free, dairy-free, and artificial-sweetener-free for some time, now. The artificial sweetener went first; then, the wheat; then, dairy.
While I was at Mayo, I had been told that regarding food sensitivities, if you really wanted to know whether you were allergic, you should consume some of those foods before the test. I couldn't quite make myself eat wheat or dairy before the test, so I expected that wheat and dairy would have lower allergic values than they ought to.
IgG allergens are classed from 0 --> 6 in this report. Four or higher is considered a 'high' level reaction.
Okay, knowing all that, here we go:
Type IV Reaction Class:
Dairy (including yogurt, casein, cottage cheese, and milk - some were high Type IIIs, such as cheddar cheese and mozzarella, and whey was a mid-level III).
Type III Reaction Class:
Chicken egg white
Some dairy (see previous)
The Type I aren't really worth bringing up. BUT - I'm not sensitive to wheat so much as I am to yeast. This is a pretty important distinction! I need to go the way of my People and eat grains that are unleavened.
Note: the type II brewer's yeast coupled with decent liver function is probably why I am one of the few ME people I know who don't have issues with alcohol (so long as it's gluten-free). Type II allergens are really fine so long as you don't indulge too much or too often.
The fact that dairy was so high shocked me, especially since I'd been avoiding it. When I went off of it, I noted profound health changes, but I made a lot of other changes at the same time so, again, I didn't think much of it. I even thought my reaction was probably lactose intolerance. Guess not. I accidentally ate a chip with a cheese dusting the other day and my throat swelled up and got all scratchy - definitely a more pronounced reaction once you've been away from a food for awhile!
Having egg whites up there makes me sorrowful, but, well... I'll get over it. On the bright side, duck eggs don't seem to have the same issue. And I can have goat's milk sometimes! This is likewise quite good news. I missed cheeses... and milk has Vit D and calcium and I would like to get those things!
CD14 is a little bit of a confusing term, because depending on context, you could be discussing a protein, a gene, a SNP, or a type of monocyte. CD14 the protein has two types: one anchored to the cell, the other sCD14 (soluble), which is what is being measured in this assay. The protein is expressed by macrophages and, to a lesser extent, neutrophils, and it is its job to detect bacteria by their lipid polysaccharide coatings.
Okay, so this is fascinating. I found an article that says that high CD14 expression is linked to hyperglycemia (full text available). This ties in to my previous post regarding @ChrisArmstrong et al.'s study showing elevated glucose due to impaired glycolysis, and to Julie Newton's paper implying the same. (Yes, yes, I've read it now, but no post on it, yet.)
CD14 is also involved in the classification of monocytes. There are CD14(+)CD16(-) (classical), CD14(+)CD16(+) (inflammatory), and CD14loCD16(+) (patrolling) monocytes that are all involved in attacking and killing the malaria plasmodium, for example. In other words, you might expect to see elevated CD14 values in an infection that would involve monocytes. CD14(+) monocytes can differentiate into dendritic (nerve) cells, which is equally weird and awesome. There's also some evidence that elevated CD14 might be associated with autoimmunity.
Mine wasn't super-high, just a bit above range.
Wow, I found a LOT out about the complement proteins, C3 and C4... but that's
TO BE CONTINUED.