Testing for a mystery illness

My brother asked me what tests I recommend and that got me thinking that I’m starting to feel confident about a few recommendations. In addition to my own saga I’ve been trying to help my wife and youngest daughter with their health issues and through this process, I’ve seen a lot. So here’s my list.

If you can afford them, or your insurance is covering them, I like these tests because the issues they may reveal effect very significant populations if not everyone alive:

  1. your genetics from 23andme and then use livewello for analysis.
  2. a hair tissue mineral analysis (htma) and have it reviewed by an expert or use Dr. Cutler’s book
  3. an ALCAT food sensitivity test. This looks at how one’s immune cells respond to a vast array of foods or other substances under conditions designed to mimic what happens in real life. Immune cells, when activated, produce both free radicals and inflammatory substances that can cause tissue damage and premature aging.
  4. a stool test from Genova which includes parasitology.
  5. Genova’s NutrEval which analyzes nutritional deficiencies.
  6. some standard bloodwork (see below).

I’m going to show you the ALCAT and NutrEval test results that came back for my daughter because they are pretty remarkable.

But first let’s look at standard blood testing.

If you have no idea at all what’s wrong and haven’t done any testing in the past, you couldn’t go wrong by getting all of these tests (the numbers are lab corp ids) assuming your insurance company is paying the bill (as mine does). If you think given the number of possible tests that the idea of listing these is foolish, you might be right. On the other hand, I’m trying to list tests that I think may be overlooked by most practitioners – the ones that aren’t necessarily obvious:

thyroid – read Hashimoto’s thyroiditis

TSH And free T4 – 224576
Free T3 – 010389
Reverse T3 – 070104
TPO antibodies – 006676
CMP – 322000
CBC With differential – 005009
Hepatic function panel – 322755

vitamin D, copper & iron – read Morley Robbins

25 (OH)D (calcidiol) – 081950
1,25 (OH)2 D3 (calcitriol) – 790540
mag rbc – 001537
plasma zinc – 001800
serum copper – 001560
serum ceruloplasm – 001560
ferretin – 004598
iron & TIBC – 001321

sugar control etc

a1c – 001453
RBC Mn – 790540

Now let’s look at my daughter’s NutrEval – this gave me the confidence to give her significantly more methylation support and allowed me to add a few other supplements based on some key deficiencies. And, it motivates me to do further testing to explore her high copper result. It also makes me wonder if  I had done a NutrEval myself at age 13, perhaps mine would’ve looked somewhat similar. A picture of someone on a teeter totter. Healthy enough for now but…

Click the thumbnails to read:

img023img024img025 img026 img027 img028 img029 img030 img031 img032 img033 img034 img035 img036 img037 img038 img039 img040

Here’s her ALCAT:

alcat-psHere’s how this test helped us. She was having lots of digestive problems so we tried various elimination diets which was an enormous amount of work in very difficult for everyone involved. She was eating maybe seven foods only and we knew she needed more variety. The ALCAT results corresponded very nicely with some foods that she knew created a big problem for her. But there were a couple foods  on her list of seven in the moderate reaction category. These are food she was eating in great quantity. So this test helped her avoid overeating foods that were triggering her immune response and it allowed us to add a much greater variety of safe foods. This hasn’t solved her health problems any means but it’s a step forward. And that’s how you win a war, one battle at a time. You need small wins.

 

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  • avatar

    Larry October 31, 2016, 6:02 pm

    Erik,
    i also have multiple issues going on. I have had a basic methylation genetic test for COMT and MTHFR with mutations on both. I want to do a complete genetic test to better help me understand the complex issues I have. It seems that 23 and me only tests a few things. Are they capable of doing MAO, CBS and all the other methylation tests? Also my doctor sent me a Doctors Data mercury toxicity test. I am afraid to do it since the test requires 1900 mg of DMSA plus 3000mg of glycine all at the same time. I react to 250mg of glycine alone! I am very sensitive to almost all medications. I am going to get Dr. Cutler’s book and get the hair test instead especially since i have been reading all your extremely helpful information. I feel your pain.

    • avatar

      Eric October 31, 2016, 8:19 pm

      Larry, you will get a complete set of data from 23andme that you can feed into analyzers such as livewello.com and you will get all the info you want. I would also be very wary of such a large quantity of DMSA. Keep reading. I would also read Dr. L Wilson. He is opposed to all chelators except in very dire circumstances..

  • avatar

    Calvin Kramer September 30, 2016, 9:41 pm

    Apparently Vitamin D is a hormone, we need sunlight to make it, I notice others using sun lamps in their cubicles. One alternative doctor I spoke with recently said autoimmune illness is near non-existent near the equator, this makes so much sense. Regular sleep cycles, year round fresh foods, who knows what else but maybe even growing practices are better.

    I do so much better in the summer, took up gardening about 5 years back, but it’s time to descend into the hell of winter again. Yeah the medical system, pretty bad, they killed a family member via a botched colonoscopy this year, no time to say goodbye, just bled out in her sleep, they probably gave her pills to make her sleep, so yeah .. they killed her, iatrogenic disease #3 killer — then they took two months to admit it was their fault.

    I look forward to picking around here some, I’ve done allot of leg work over the last few years trying to figure out what is up with my mystery illness.

    • avatar

      Eric October 3, 2016, 11:51 pm

      Sorry to hear about your family member Calvin – that’s tragic!

      You got me thinking about sun lamps and I did a lot of research. If you don’t mind having a mercury bulb in your house, it’s quite easy and inexpensive. I won’t bring mercury into my home, so I’m going to have to spend big bucks for these LEDs: http://www.bmlhorticulture.com/led-light-bar-solar-max-spectrum/

      I think the lamps are a great solution for people like my wife who won’t get much sun even in the summer and me in the winter.

  • avatar

    Joshua September 10, 2016, 9:10 am

    Eric! Heck yeah!! I want to yell out at you (in a good way) about avoiding the Vitamin D supplementation! Now I can’t say with complete certainty, but all my research and some of my experience up to this point has led me to this reversal too, to stop trying to up my D levels, and instead do the opposite! But it actually wasn’t through the guy you mentioned though I’m excited to look him up. I can’t figure out how the oral Vitamin D3 supplementation craze started, why 1000s of research studies have took place in about the last 10 years, how it seems both the medical mainstream, media, AND so much of the alternative medicine both came to embrace it so greatly. On the side of alternative medicine, there are many MD integrative doctors, nutritionists, scientists, researchers etc. that I have a lot of respect for and believe them to be genuine and sincerely empathetic people trying to help, but somehow may have gotten mislead along the way in researching the findings of D supplementation. Maybe that is naïve of me to think, or to disagree with the overwhelming consensus in the little researched I am compared to any of them, but the alternative views put forth by some, and the research that seems to be there compels me to believe the opposite. For example I think the Vitamin D Council’s and Dr Mercola (who I think is basing it on their target levels and other supposed Vitamin D experts) levels of 25hydroxy seem kind of ridiculous (at least on the basis of a natural level and not considering a therapeutic/pharmaceutical level) considering stuff like 2 tribes living a very natural lifestyle almost on the equator have average D levels that would be considered deficient (cited on the D Council’s website themselves), and that supposedly most everyone in the world is D deficient. Dr. in nutrition, Christopher Masterjohn on the Weston Price Foundation and Dr. Marshall of the Marshall Protocol offer differing views from the “everyone has gotta get their D levels up” mentality. And to think what if Big Pharma knew to promote D would lead to greater sickness in the long run? to treat with tons more medications?

    Maybe in your research, you’ve realized that it seems to be well established and agreed upon within the medical community that Vitamin D has some immune enhancing properties, but is overall an immunosuppressant. At least partly it being a steroid is reason for this. And perhaps so many of the positive results of D3 supplementation, at least for some diseases or for a limited time, are the result of its immunosuppressant properties, which may have contributed to so much of the confusion and miscommunication if there is such. For instance, a study showed that in Multiple Sclerosis, Vitamin D supplementation or levels prevent the immune system, though primed and ready, from traveling to the CNS to do its attack.

    Which brings me to another point, and God I hope you get this, unless you are already intensely aware of this idea already. Even within the medical mainstream (at least according to what I looked up on WebMD), there is a part acknowledgment that all the autoimmune diseases might have an underlying chronic infectious disease agents that iare causing the immune system to fight in the first place. And perhaps you haven’t been diagnosed with any autoimmune disease, and I don’t know where you are currently with your health and progress, and I know your story of having been exposed to a lot of heavy metals and mercury and having a weak liver and gene mutations that hurts your detoxification pathways, and I know you know you’ve had at least some types of parasites in you and have seen them, but most likely I’d say from all the research I’ve done, I’m thinking there is probably a great chance that you have some type of incognito chronic infection that is causing you perhaps at least as much problems and blocking your path to health as the metals are and the rest of it.

    And perhaps this is Lyme and/or the associated co infections that might be much more greatly widespread than is let on by the CDC. Seeing a tick bite or rash or living in an endemic area is far from a prerequisite for having it, the standard tests are highly unreliable giving a great percentage of false negatives, mosquitoes, mites, fleas, spiders etc can carry it and possibly transmit it, and it also may be transmitted sexually as their is some research to support it. Lyme is highly connected with pyrrole disorder too and it seems the bacteria(s) may make some changes to your liver to create this and other things.

    Perhaps you have already come upon this info a long time ago as it seems like its widespread in the internet community, but I just thought I’d share it, at least in hopes that you’d analyze it a little closer than maybe you did the first time around.
    Your mentioning that your wife and daughter are having their own health issues, though of course that is common for everyone to have health issues, perhaps it’s not just genes or whatever else, but it might also be because of an underlying infectious agent that you have all shared. For example, sarcoidosis, another autoimmune disease seems contagious in that it seems to run in close associations of ppl. And maybe they are only having minor and, in reality, unrelated problems to what you experience, but do remember that Lyme, like its cousin Syphillis, is also known as the Great Pretender as there are tons and tons of unspecific symptoms that could be attributed to a whole host of diseases, and one person’s symptoms can be totally different from the next person’s, though they share some underlying chronic infections.

    So with that said, it seems that one would not want to try to boost their 25hydroxy levels (the semi-active form of D that is measured) by taking oral supplements, and my experience, in purposeful sunbathing when they’re body is trying to fight infection. It seems that while sunbathing or consuming foods that have natural D3 in them may not be as bad, it seems like the synthetic oral D3 supplementation may override the body’s regulation ability moreso than the formerly mentioned. This is pure conjecture but maybe this is why oral D seemed to affect me first before sunbathing ever did. And with the lyme bacteria turning down your immune system on a genetic level (this is part how it thrives), it doesn’t seem like you’d want to suppress it in other ways like taking D or getting too much sunlight (I’d also think you have to consider your genetic ancestry and that you came from a latitude probably much farther north than your current location and bundled up, and maybe so there is a tendency for you to get too much D maybe during your summer months where you live, where this becomes past your body’s regulating capabilities (although this is probably a little too simplistic as you would also consider the diet of your ancestry and maybe they took in a lot of foods with high natural D and if you live in the city and if you are inside all day, etc., but this is just food for thought about the possibility of your body not being able to regulate a certain higher level of sunshine in D production, despite the conventional idea that there is no problem.)

    I’ve probably read 100s of pages about Borrelia Borderferi (Lyme) and the other infections. But I wanted to point this article out to you, and I haven’t even read it all yet, but from what I see I think this is a great and important place to start.

    http://articles.mercola.com/sites/articles/archive/2009/08/04/dr-klinghardts-treatment-of-lyme-disease.aspx

    Also, here is Dr. Marshall, I believe he is a doctor in biochemical engineering, so not an MD, but supposedly he has healed many ppl with various autoimmune diseases (including his own sarcoidosis) with his protocol, which I don’t necessarily agree with but involves avoiding all D in all its forms like the plague, taking a drug that turns on the immune system much more greatly epigenetically I guess you’d say, and then taking many rounds of antibiotics for an extended time. But note his slides of how Borrelia Bordefori (sp?) and the Epstein Barr virus (mono) turn down the immune system genetically.

    https://www.youtube.com/watch?v=z2yEwnZy8B8

    Well and if none of this helps or is new to you, I just want to take this opportunity to say that you’re an inspiration in the horrendous struggles you have faced for so long and how you have tried to help people along the way (and definitely have with I’m sure tons of ppl; you’ve definitely helped me and contributed to my knowledge), and all this suffering will be redeemed one day. If any of this does enlighten or prove to be fruitful, i’ll be glad to answer any questions you have or thoughts and my experience and reading thus far about how to treat it.

    • avatar

      Eric September 10, 2016, 3:50 pm

      Thanks for your kind words Joshua! I do wish I understood the vitamin D mystery better. It’s probably safe to assume that like many other supplements, it may Help many people at least initially while it harms others. There are so many cases like that where experts warned about the dangers of XYZ but XYZ has saved many lives. That’s the problem with our extreme individuality. A good case in point is IV chelation therapy. It is life transforming for many and severely debilitating to others. We gamble with everything we take. There is a good chance I do have Lyme but I’d consider it opportunistic and not a primary cause of my health issues as I know my gut infection seems to rule all the others. Now I’m starting to understand how it happened. High iron, low bioavailable copper, high b12 / folate supplementation and cortisol supplementation are all risk factors… the next few months should be very very interesting! Stay tuned 🙂

  • avatar

    Patrick August 22, 2016, 9:21 am

    Eric – good info here – I would love to talk to you and compare notes. My blog post of my studies http://patrickrambling-pb.blogspot.com/2012/01/curriculum-vitae.html

    • avatar

      Eric August 27, 2016, 9:28 pm

      hey Patrick, let’s talk, send me your phone number in a comment along with some good times to call you. Of course I won’t publish your comment!

  • avatar

    Brian August 20, 2016, 11:00 pm

    Eric – thanks so much for posting this…really gives insight as to what the different tests are for.

"...nothing ever goes away
until it has taught us
what we need to know.
"
-Pema Chodron

"God, whose law it is that all who learn must suffer. And even in our sleep pain that cannot forget, falls drop by drop upon the heart, and in our own despair, against our will, comes wisdom to us by the awful grace of God."
-Aeschylus

About


My name is Eric - I‘m 48 and saw a doctor for fatigue at 17. I lived fairly normally if a little subdued by lack of endurance at times. But then, 12 years ago I fell into a nosedive after moving to South Florida. Now, I know heavy metal toxicity is a significant source of my troubles along with genetic methylation cycle dysfunction and Lyme disease. I spent 18 months chelating the metals out and starting up methylation but stopped when I felt myself circling the drain. Currently going after Lyme and co-infections. More about me here.

* supplements
* hair test
* genetics
* lessons learned

"Battles are won in their darkest hours. Wars are won by learning something from each battle."
-Eric

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