Big Problems and Slow Solutions / Rants and Silver Linings

Tilted Testing

A visual representation of how I feel about the speed of health recovery.

A visual representation of how I feel about health recovery.

Here is the crux of the issue – I spend most of my time working on health issues, for me and my child. I have no interest in medicine, I have no training in medicine, and I have no real special talent in medicine. I received an education in science, I have some talent as a teacher, and some interest in…I don’t remember what I was interested in before I was mainly interested in not being limited by my health. None of that matters because now what I think about, read about, agonize about, and plan about is health issues.

Like how it’s time for another round of test results. This time it’s double the fun because it’s test results for my daughter and me. We’ve both had a lot of GI problems the past year. A round of testing in the fall showed candida and bacterial problems for me along with the low SIgA issues I’ve had for years. My daughter had a parasitic infection and high markers for colonic inflammation. So I did some intensive probiotic supplementing, quercetin for food intolerances, and some dietary changes. She did a prescription anti-parasitic, an herbal antiparasitic, a probiotic and some dietary changes. Results show that I cleared the yeast and bacteria problems and the SIgA is now a bit less non-existent. Her results show that she still has the parasite and high inflammation. Neither of us feel any different.

Exhausted Tilted Mom and Lelu leaning on each other.

Exhausted Tilted Mom and Lelu leaning on each other.

So we’ll talk to the EI specialist and the family doctor and maybe the allergist again. Maybe we’ll try another pediatric gastroenterologist. Some of these doctors will insist that she does the prescription again, or that we both do a lower and upper endoscopy, or that we don’t worry about it at all. Then I will have to make another round of decisions on treatment. Here is an unfortunate truth – advocating for your own health is a constant job. After you’ve researched and interviewed and finally found some experienced physician with whom you’ve got a good rapport, you are still not done. You are never done with the researching and thinking and weighing your options and calculating cost vs benefit and making critical decisions. It’s exhausting.

In the interest of making the process a bit more streamlined, I have compiled a list of questions to ask whenever a physician wants to do tests, especially if he/she jumps right to expensive or invasive testing. Often there is no need for a fishing trip if the physician works through a complete medical history and is willing to have a thorough conversation about your concerns and needs. These admittedly time-consuming steps often rule out more issues than a test will.
What will this test confirm?
What will this test rule out?
What will we learn from the test that will determine or modify my treatment?
Will that treatment modification address the health issues that concern me the most?
What other test can tell us something similar?
What is another way we can rule out or confirm the same suspicions?
How precise is the test; will we have to repeat it?
How accurate is it; will we able to trust the results?
If the test results use a reference range, what population is it based on?

The tests from which I have learned the most are SpectraCell’s Micronutrient Panel and DiagnosTechs GI panel. My EI physician Dr Ziem relies heavily on the Spectracell blood test results to fine tune the neural sensitization biochemistry through my diet and supplements. This test measures how micronutrients are actually functioning within the white blood cells in contrast to serum level tests, which are not always representative indicators for how those nutrients are being metabolized. The GI panel is a saliva and stool sample collection that provides information on intestinal and immune system health; detecting the presence of yeast, bacteria, parasites, inflammatory biomarker levels, pancreatic digestive strength, and genetically inherited food intolerances through secretory IgA. During my initial health crisis and diagnosis, which came after years of working with organo-metallic gases, I relied heavily on urinalysis for toxic elements, but that was obviously a specific situation. I don’t think everyone in our chronic illness community has heavy metal toxicity, but I do believe we could all benefit from a reliable assessment of our nutrient levels and GI health.

So I will go talk to some doctors, make some decisions, and implement some new treatments into our lives. But I will also trust that I have done all the due diligence possible in the process so that at the end of the day, I can close up all my files, tabs, and windows on health issues and get back to what I am interested in.

My daughter’s footwear selection, guaranteed to make me look away from the boring test results.

My daughter’s footwear selection, guaranteed to make me look away from the boring test results.

4 thoughts on “Tilted Testing

  1. I love your list of questions regarding testing!
    It would be great if all doctors had to answer those any time they wanted us to do any type of testing…
    You also mention being exhausted by advocating for your health…
    It’s hard to know from a few blog posts what else is going on, so forgive me if this is not relevant.
    Yes, sometimes it really is exhausting finding ways to meet our basic needs, and trying to find out how to address things that aren’t working, but it’s not good to make that the focus of our existence (says someone who had to focus intently on surviving and not much else for a few years, that after doing a ton of research that still didn’t prevent my health from tanking)
    Please don’t place so much importance to recovery at some point in the unknown future…
    We need to do the best we can and then let go.
    I hope you are also taking some time here and there to nurture yourself NOW, don’t wait until everything else is in order…
    Even regular breaks to sit and just breathe while looking outside, or being outside… To meditate and allow the present moment in…
    Taking this time to contemplate, to be gentle, being without pressure one way or another, can sometimes yield as many answers as the doctors and their testing can.
    We live in some challenging times, and research has not caught up to reality… Sometimes giving ourselves the time and permission to allow our intuition to arise, allows us to hear the quiet voice of inner wisdom that might be whispering something that isn’t entirely logical or rational, but which holds a clue or two to moving forward…
    I hope you receive the best answers and find the best healing tools possible.

    • Thank you so much for your compassion and concern. You have some wonderful suggestions here for keeping our balance and I think you right about all of them. I have only been blogging a few months and your comment has prompted me to look at how, so far, I have used this space to vent and problem solve and find silver linings but very rarely to express JOY. Which is something I do frequently in real life! In fact, I just got back from a morning spent paddle boarding with friends, even played with some manatees this time. I breathed deeply, felt profoundly grateful , and laughed really hard. So I know what my next post will be! Thanks again, Linda.

      • When you look at my blog, it’s probably hard to tell there’s good stuff going on in my life too 😉

        It was started for me when I was in housing crisis and needed help… and wasn’t able to put it together myself… so the purpose has changed over time (as are my abilities). I actually still don’t have a clear purpose, except to share info that I find helpful to know… and would be happy to leave my personal stuff completely out of it except people ask me for it…

        I am really trying to find ways to focus more on solutions and prevention too, and not just for those of us with MCS/ES… Big ideas, little capacity, but sometimes aspirations help us as we put one foot in front of the other…

        Playing with manatees and laughing with friends sounds wonderful!

        Thank you for sharing the challenging parts of your journey too! It IS really helpful for people who are trying to figure out all these new health problems…

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s