Call for Exposure Stories
Share your story of chemical exposure and loss of tolerance by responding to this post. If we feel your story may be helpful to others learning about TILT, Dr. Miller will re-post your story with her comments. Be aware that you are posting your story in a public forum. Do not include identifying information unless you are comfortable with it being available to anyone on the web, and please do not post your story if you are pursing any legal action regarding your exposure or TILT-related illness. We also ask that you do not name any third parties including doctors, coworkers or family members. We will remove any postings that are not appropriate to this forum and the topics we address.
Following is a format you may wish to follow in describing your experiences. Specific information is most helpful.
Initiating exposure(s): What was it? Which year did it occur?
How many others were exposed and did they develop TILT?
Fill out the QEESI – what are your scores on the 5 scales, both now and when you were at your worst?
After the initial exposure, how soon did your intolerances begin? Which did you notice first? Which caused the most severe symptoms?
Please indicate if you have experienced the following types of intolerance, and describe your principal reactions/symptoms.
Chemical intolerances:
Food intolerances:
Caffeine intolerance:
Alcoholic beverage intolerance:
Adverse drug reactions or drug intolerance:
What medical diagnoses have you or other affected family members received since developing TILT?
How many doctors did you see before you figured out what had happened to you?
Subscribe to RSS
Dear Dr. Caludia Miller,
Please visit my web site and read about my health issues.
In 1989 Exxon told the cleanup workers the same story, that the crude oil is not toxic. Some of us are living proof of the toxic exposure, and many others have died. Please view the YouTube video, and help get the message to Gulf residents, BP crude oil cleanup workers, and President Obama. Respirators need to be supplied to oil cleanup crews.
Thank you.
http://www.youtube.com/watch?v=5M1J7U2GYA0
July 7, 2010 – Amy Goodman, Democracy Now Interview
http://www.democracynow.org/2010/7/7/bp_oil_spill_cleanup_workers_getting
My web site: http://www.silenceinthesound.com/stories.shtml
Sincerely,
Merle Savage
702-296-4211
Thank you so much for providing this forum. Unbiased research into the chemical injuries of only one class of TILT patient, those disabled by pesticides, would seem to demand that some follow up be done years after exposure to determine the extent of these injuries. Yet Dr. Miller is alone in asking these poisoned people what has evolved in their health histories.
I and my family were exposed to chlordane, heptachlor, diazinon, and dursban that were applied by a licenses applicator in my home from 1985-86. My husband and daughter were also exposed. My daughter developed severe chemical intolerance and is currentlt disabled by these intolerances for low levels of chemicals. My husband developed sarcoma cancer and left the home. My scores on the Qeesi were zero before I was poisoned and range from 96-99 now. I primarily react severely to any kind of solvent or pesticide mixture most severely, but also react to many medications, alcohol, chlorine, tobacco, perfumes, room deotarants, local pollution sources,and other solvent emitters.
After I was poisoned I have been diagnosed with periperal neuropathy, vistibular neuropathy, auto immune damage, an inoperable petroclival meningioma brain tumor, chloracne, obesity, diabetes, arthritus (osteo and rumatoid), toxic encephalopathy, fibromyalgia, lung damage, chronic fatigue, cognitive deficits in attention, organizational ability, and memory. My daughter has been diagnosed with periperal and vistibular neuropathy, toxic encephalopathy, heart damage, chroic fatigue, fibromyalgia, lung damage, chloracne,severe contact dermatitus, cognitive deficits in attention, organizational ability, and memory. These diagnoses were upheld in court after 14 years of litigation. My daughter and I still suffer from these injuries on a daily basis.
We saw about 6 doctors before we had any idea why we our health kept getting worse. One pediatrician’s nurse asked me if I did not have anything better to do than to take my daughter to the doctor. At the time my daughter was passing out and falling down 8-10 times a day and twice had to be stimulated when she stopped breathing in her sleep. I was told my daughter was just clumsy, but she had not had this problem before. She was also severly drooling and I was told she was just cutting teeth, in fact she was not cutting teeth.
We are repeatedly told that there is no one who can treat us for our chemical injuries because they happened too long ago and there is no science linking our injuries to the exposures. There is only treatment for acute exposures or occupationally caused injuries. We have not been able to find a qualified physician who has any knowlege of pesticide or toxic exposures who will see us, especially as we are limited to Medicaid medical services. Often we are prescribed medications that endanger what little health we have left. We can not even find doctors who will defend our need to avoid the exposures that cause us to be severly ill for long periods of time and seem to weaken our defenses to contagious infections, which then take much longer to get over than would be expected.
I am currently appealing to the Environmental Justice Program within the Environmental Protection Agency to include and defend the health and needs of those with TILT. I invite anyone who is suffering from TILT to join me in sending comments to the EPA to request that our existence and needs be addressed: To view the interim guidance and submit feedback: http://www.epa.gov/environmentaljustice/resources/policy/ej-rulemaking.html
Finally, please join me in celebrating and praising the years of fine work and dedication by Dr. Claudia Miller
;~; I am really thankful to this topic because it really gives up to date information :,*
‘*, that seems to be a great topic, i really love it -*’
Dear Dr. Miller,
Regardless of exposure histories, your concept of TILT has a very important basis. It presumes that the exposure is toxic and not that the patient is defective in some fashion for showing a toxicity response. It is merely the appearance of tolerance which has been lost and the degree of response increased. My thought is to pursue this from the point of view of NOEL - the ‘no observable effects limits’ used to deny chemical toxicity.
Organophosphates were banned in many places because they caused enzymatic suppression, measurable but rarely observable in the average person because:
1. Effects were subclinical in some case.
2. The causation was ubiquitous (Dursban present in the urine of most Americans) and people were accustomed to a lower level of ‘wellness’ so didn’t complain.
3. Disorders were in evidence (e.g. endocrine, MS, lupus, infertility) but not ascribed to their appropriate causation for lack of medical inquiry.
4. Once the tests for OP toxicity became fairly well known, the numbers shown to have been poisoned were sufficient to support a ban by the EPA for indoor use.
5. A minority of individuals had greater effects than others due to diversity of biochemical make-up and many suffered greatly over time from depletion of essential defenses. Nonetheless, the effects were toxicity related and not ’sensitivity’ related. Technically, sensitivity is often used to cite particular periods of development when exposures are more devastating to the organism. It NEVER means a substance with toxic properties is non-toxic to anyone.
We must refer only to the chemicals when looking at product bans or restrictions. We can cite the variety of toxicity responses (e.g. normal people suffer moderate lung constriction when exposed to the most common fragrance chemical, Eliot et. al.) suffered by many or by a minority of individuals. Those not showing signs are merely within the NOEL bell curve which must be ‘widened’ to incorporate more diversity of individuals rather than just healthy adult males. If a third or so Americans self-report as chemically sensitive, then the bell curve would include many of them within two standard deviations of the norm, i.e. NORMAL. The concept of TILT appears to be due to an abnormal statistical curve in which all effected people are placed outside of the two standard deviation mark because the N (normative population) is faulty in composition.
Look at the chemicals and their effects upon human cells and systems at any point of development. Look at inflammation markers, felt or unseen. NOEL is insufficient to categorize any substance as benign when the effects upon cells is measurable no matter the perception of the individual.
The addition of masking fragrances to toxic substances like pesticides must be outlawed because physicians have no useful exposure histories when characteristic warning odors of poisons are not present to cue patients. NOEL has no bearing on toxicity issues or perception of toxicity.
It isn’t about the patients. It’s about the chemicals.
The disorder is toxicity response and can be systemically identified as in asthma, hormonal alterations, neural changes, inflammation markers etc. Universal health care is a threat to industry because the additional costs of treating toxicity induced responses leads governments to locate causes and regulate them as with tobacco. Bans in the workplace led to reductions in cardiac events of up to a third among non-smokers whose risks were unknown but brought on by exposure to smoke. When this unexpected effect of bans was seen, testing finally demonstrated that there is no safe level of exposure for anyone.
They aren’t calling people made sick from tobacco, ’sensitive’ or ‘MCS’. They are poisoned. Unless this honest appraisal of toxicity responses to toxic chemicals becomes mainstream, we will never attain the regulation required to restore health and vitality to the population. This insistence upon labeling patients as defective prevents lawsuits in which toxicity has been proven from ever reaching a courtroom - or a medical textbook!
I was exposed to crude oil and dispursants during BP oil last year. I started getting sick in July and it got worse from there. I have had numerous tests, xrays and tons of doctors look me over. nobody can figure out why i have specific symptoms, low counts on blood reports and most of my lymph nodes and glands swollen beyond recognition.
I have been seeing non-traditional specialists to help me detox. it has helped, however, i am still having a lot of memory and focus problems. best way to explain is, I feel like a sponge full of heavy substance. i’m still having rashes and hot spots mainly on my face or arms/legs. i would love for you to review some of my files.
dear Dr. Miller
Steer I was a participant of the STEER program in April 2011 in UT Health Science Center Laredo, Texas. I am very grateful that you have visited us. 3 years ago I was diagnosed with multiple chemical sensitivity, but I have the symptoms since childhood, I have ear pain and otitis constant, I have difficulty concentrating, forgetting things. I’m about to finish my career and I it takes me days or weeks to do some easy homeworks. I thought all these symptoms were normal and had no relation with the disease. Another thing I would say is that when I’m exposed to chemicals I have inflammation of the right palate, in addition to the symptoms classified. Sometimes I feel that my mind goes blank for several seconds, as if out of reality. Many times start something and soon lose motivation. I would like to add that I am very pleased to have participated in the STEER program, because this program helped me to have motivation to continue studying and I am now interested in public health, and help others who suffer from this esnfermedad you to learn more through their website.
thank you very much for this site allows you to express the way we live this disease.