Rants and Silver Linings

Discover TILT

Actual, not srearranged pic of a small portion of my bookshelf.  I have no idea how the Complete Nonsense of Edward Lear got filed with here.

Actual, not rearranged, picture of a small portion of my reference bookshelf. I use these to help me decipher all the medical language I do not know. I do not remember filing the Complete Nonsense of Edward Lear here, but it kinda makes sense.

I finally got around to reading Discover Magazine’s November article “Extreme Chemical Sensitivity Makes Sufferers Allergic to Life” by Jill Neimark. Reading up on this illness can be a very tricky process, for me at least. There are few truly useful scientific studies. There is a lot of anecdotal evidence. There is a lot of controversy and acrimony. It’s just…messy. And I don’t like messy. I like it when it all fits together and has, in the immortal words of Ignatius J. Reilly, a sense of “theology and geometry.”

My frustration with TILT literature, print or online, leads to reading hesitation on my part. I know once I start, I will get both angered and determined to do the impossible – figure it out myself. So I don’t do it often. But I read the Discover article and thought I might share some impressions and even, gulp, some opinions.

The article starts with your basic personal story that is all too familiar. Some young (male this time!) professional has a series of pesticide and sick building exposures that trigger the onset of chemical sensitivities and eventually he is forced to take disability and move to one of the EI communities in Arizona. Sadly, I am no longer surprised by any of this. I am very, very sorry for the man. And incredibly grateful that I managed to come through a similar health crisis with different results.

The author has interviewed Claudia Miller, a physician and environmental health expert at the University of Texas School of Medicine in San Antonio. Dr. Miller is a familiar name to most of us with chemical sensitivities; she has published numerous TILT studies and one of the EI classics Chemical Exposures: Low Levels and High Stakes (which you can see in my bookshelf photo). I was interested to read about her history with Theron Randolph in this article which gave me new insights into her attitudes on medicine and science.

“TILT describes a genuinely new class of diseases unique to our toxic, modern times,” says Miller. “People suddenly cannot tolerate chemicals and exposures they’d tolerated their whole lives. It’s the hallmark of TILT. Some people I’ve counseled even use it as a verb. They say they’ve been ‘tilted.’” I swear to god, I thought I was the only one doing this. As I have said before, EI is a very isolating illness and so I miss out on a lot, even language usage. Or possibly, I am a bit of a megalomaniac.

Ms. Neimark also interviewed Frederick vom Saal, a reproductive endocrinologist at the University of Missouri-Columbia who adds that TILT “may be driven by epigenetic changes”. Epigenetic changes happen when the “environment alters the expression of genes without changing the core DNA code itself.” I first read about epigenetics a few years ago but have been aware of it for decades. My mother, my older sister, my daughter and I have all developed similar chemical and food sensitivities, triggered by different exposure combinations. Each generation develops these chronic issues with a greater degree of severity and at a younger age than the previous one, ending with my daughter who was born with extensive food allergies that are still spreading. We are the “genetically vulnerable” that Ms. Neimark refers to.

While epigenetics may explain the selection of people who succumb to this illness, the etiology is a controversial mystery. Miller is still focusing on the limbic kindling model as a proposed mechanism for TILT, as is the Danish Research Centre for Chemical Sensitivities at Copenhagen University Hospital Gentofte. They have dismissed abnormalities in the detoxification genes as a mechanism and instead insist that something else is going on in the brain. Their theory is that repeated low dose toxicant exposure to olfactory receptors, which allow access across the blood brain barrier, result in changes to brain wave activity and the central nervous system. I know it’s older but I still like Bell’s article for a good overview, “Different forms of sensitization include limbic kindling of seizures (compare temporal lobe epilepsy and simple partial seizures) and time-dependent sensitization of behavioral, neurochemical, immunological, and endocrinological variables. Sensitized dysfunction of the limbic and mesolimbic systems could account in part for many of the cognitive, affective, and somatic symptoms in MCS.”

I can follow this theory to a point. The limbic kindling model really only applies to epilepsy I think, but they are using language carefully to distinguish that previously established process from TILT. In an attempt to better understand how it might apply to TILT theories, however, they have been doing studies on pain response. I understand the logic of using pain response to measure variations in the nervous system and brain activity. But I tend to jump ahead and then get all twitchy, because I don’t like proposed models that only explain pain symptoms. Most of us have a lot more going on than pain. Then the article’s author really pisses me off by including a single case study of MCS remission by shock therapy. You know how many single cases are out there with different radical treatments that “cured”?! Don’t throw that in there with real studies!

Fortunately, Ms. Neimark comes back down to earth and reviews a study performed by researchers at the University of Hebron in Barcelona. They showed there was decreased blood flow to specific brain areas after exposure in chemically sensitive patients. This study correlates nicely with Dr. Miller’s own study of Gulf War veterans who demonstrated slower blood flow through their cerebral artery after exposure to “imperceptible amounts of acetone”. The article also discusses the widespread nature of TILT; how it shows up in studies across the world, from rural communities to Gulf War veterans to the workers in the EPA headquarters. If you haven’t heard about that last one, read up on it and be prepared to roll your eyes a bit!

As usual there is plenty in this article to anger me and I am never in complete agreement with a single physician or researcher, including Dr. Miller. But I like that her immediate goal is practical and helpful, regardless of how far along we are with combining all these different proposed theories into a universal one. Dr. Miller has always been of the opinion that TILT is a new family of disorders. As she wrote in Chemical Exposures, “Certainly, it would not be feasible to develop a single case definition that would embrace all infectious diseases, all immunological diseases, or all cancers. Toxicant-induced loss of tolerance also may not lend itself to a case definition for study.”

While we are waiting for the medical researchers to find more useful results, Miller wants all medical practitioners to be educated in TILT such that they can catch those most in danger of developing the illness before it happens. To that end she is a proponent of having QEESI (the Quick Environmental Exposure and Sensitivity Inventory, available for free at familymed.uthscsa.edu/qeesi.pdf) as a standard form at every physician’s office. At her ideal family doctor visit, “You will be given your QEESI score. And if you’re one in every five who appears to be at risk for TILT, you will be counseled on lifestyle and dietary changes.”

In the face of all the confusion and anger, a useful goal is appealing. Especially one that would prevent patients from developing TILT. Because I really wouldn’t wish my reference section on anyone.

Another fun shelving paradox.  Where is Rea's Volume 3 and why are my father's old Duggan books here?

Another fun shelving conundrum. Where is Rea’s Volume 3 and why are my father’s old historical fiction books by Alfred Duggan filed here?

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One thought on “Discover TILT

  1. We have one of the few disabling medical conditions where we the patients have to know more than the medical establishment if we want to survive!

    Here are some other good, informative links:

    Free PDF download of Chemical Exposures: Low Levels and High Stakes, Second Edition by Nicholas A. Ashford and Claudia S. Miller here (she has other interesting research available to download on her website too):
    http://drclaudiamiller.com/publications-presentations/

    Martin Pall’s work is a must read (and a serious omission from Niemark’s article). This posted material is apparently very similar to what was published in the last edition of Wiley’s Toxicology text:
    http://www.thetenthparadigm.org/mcs09.htm

    Great research here from Pamela Reed Gibson and James Madison University (check out her book “MCS Survival Guide” too): http://www.mcsresearch.net/

    And (for today) last but not least, a brand new report “Recognition Inclusion and Equity -­‐the Time is Now: Perspectives of Ontarians Living With ES/MCS, ME/CFS and FM” … The short one is 35 pages, the full report is 264. It’s VERY relevant. http://www.meao.ca/events-dec5.html

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