Discussion in 'Fibromyalgia Main Forum' started by woofmom, Dec 12, 2006.
Kim Palmer, a very talented musician, died in October from Multiple Chemical Sensitivities.
That's sad. Hugs!
know if you havre that? i feel i do.
With all the treatments she tried, she didn't mention boosting Glutathione. I believe it would have helped her.
Also, she made mention of flea bombing her apt, and to having used Malathione on Roses. I will go to my grave believing that the cause of our illness is SIGNIFICANT chemical exposure, usually pesticides.
So sorry to hear that.
I agree about the chemicals causing so much damage.I have MCS,CFS,FM.
And I was told it was from all the chemicals,mostly pesticides and herbicides,that I worked with for 19 yrs.
It has poisined my body.
This news is, indeed, truly tragic. People with M.E. have died from complications as well...and I am not even including the suicides....may she be in peace, and may her family find peace soon!
I have M.E., FM/MPS, Lyme (newest diagnosis - oh joy! Note sarcasm), MCS (goes along with M.E. and/or FM), small pituitary adenoma, etc.
There is a movie called "Safe" starring Julianne Moore. It's supposed to take place back in the '80s when no one knew what to do with people with CFS/CFIDS/M.E., "invisible illnesses," and MCS, etc.
The movie is about a woman who suffers terribly from MCS and her struggles with it...It's an independent film made in, I believe, 1995.
I couldn't bare watching it many, many years ago as I was still so sick and frustrated (still frustrated and sick enough to be on disability but better).
While the movie could've been better, kudos to the writer and director and to Julianne Moore for even making a movie such as this one...
Check it out...
To better days!
So sorry abouyt the sad news. I have often wondered if I could be afflicted with this. I worked in electronics and other jobs dealing with chemicals, going on 18 years. Also I was a hairstylist with 9yrs of hair tints, perms and relaxors. Si if I didn't have it I sure don't know why.
room last Sunday! I must have gotten almost delirious and then realized that I had sprayed Tilex on my bathroom mirror. I felt so sick that I couldn't raise my arm to wipe the Tilex off the mirror with Windex.
I felt like all of my oxygen was being sucked out of my body and I was going to die.
To make a long story short I drove myself to the hospital but couldn't find a parking place. I finally found one and had to walk about a block. I had to walk so slowly otherwise I never would have made it.
Luckily the PA picked up on the fact that I had been using Tilex when it I felt so sick.
I think I have mold poisoning. I posted something on MCS below.
Chemical Sensitivities (MCS)
Chemical Sensitivities develop in a large number of mold victims. This condition may be referred to, also, as MCS (Multiple Chemical Sensitivities).
This means you may feel ill from exposure to everyday chemicals that you encounter, suddenly, when these never bothered you before. The reaction may range from mild to extreme. Many people report they become sensitive to: perfumes, perfumed cosmetics and soaps, exhaust, cleaners, pesticides, herbicides, etc.. This may also occur in those exposed to chemical poisoning (high amount or low levels, over time). Mold poisoning is a chemical poisoning, as well, because the fungal poisons (mycotoxins) are chemicals. Perhaps this is why the body reacts to multiple chemicals, for many, following mold poisoning.
See Mold Warriors by Dr. Richard Shoemaker, for more information about Mold Poisoning and MCS.
Read the Danish EPA findings on MCS
Read the Australian Gov't findings on MCS
Visit http://mp3.rbnlive.com/Deagle06.html to listen to a radio show with Dr. Martin Pall, MCS Researcher
Dr. Martin Pall, Washington State University
firstname.lastname@example.org phone: 509-335-1246
Wed., October 25, 2006: Playlists: M3U | RAM (Individual MP3s: Hr1 Hr2 )
Hr.1 Dr. Martin Pall:Free Radical Basis of Major Disease.
MCS Video: http://video.google.com/videoplay?docid=5457019995547650217
See our FAQ and Internet Links for more on Multiple Chemical Sensitivities
a few more links sent in by our site visitors:
Multiple Chemical Sensitivity - The End of Controversy
By Dr. Martin Pall, Washington State University
email@example.com phone: 509-335-1246
Multiple chemical sensitivity (MCS), where people report being exquisitely sensitive to a wide range of organic chemicals, is almost always described as being "controversial." The main source of this supposed controversy is that there has been no plausible physiological mechanism for MCS and consequently, it was difficult to interpret the puzzling reported features of this condition. As discussed below, this is no longer true and consequently the main source of such controversy has been laid to rest. There still are important issues such as how it should be diagnosed and treated and these may also be allayed by further studies of the mechanism discussed below.
New Mexico Multiple Chemical Sensitivity Brochure
Often, MCS (Multiple Chemical Sensitivities) develop after a prolonged or extensive mold exposure. This pamphlet describes MCS, produced by the State of New Mexico, in 2000.
MCS: Medical Update by Dr. Sherry Rogers, MD
(MCS)Medical Update AEHA Newsletter Winter/Spring 1993 - 1994 by Dr. Sherry Rogers (noted MCS physician, located in upstate NY) Each year we see scores of teachers who have the same story. It goes something like this: Because there was an increasing need for their special educational services, a new classroom has to be created for them. ... As part of the renovation, the newly partitioned room or closet was emptied, painted and carpeted. Children who took classes in this room usually did so for a maximum of one period a day, but the teacher often spent her entire day, five days a week, in this renovated, under-ventilated small room.
Over a period of time, she developed a large array of symptoms, depending upon the individuals, but the commonest by far was always brain fog. She gradually became spacey, dizzy, dopey, felt as though she couldn?t concentrate well and was exhausted or depressed for no apparent reason. She usually had a host of other complaints that seemed unrelated, such as irritable bowel, headaches, recurrent sinus infections, body aches and arthritis, nausea and irritable bowel, unexplained mood swings, painful or irregular menstrual periods, and much more.
BIOMARKERS of MCS
Abnormal Medical Tests and Physical Signs Associated with Multiple Chemical Sensitivity
Compiled by Albert Donnay, MCS Referral & Resources, adonnay @ mcsrr.org, 410-889-6666, 2/1999, rev'd 8/2000
This table lists the medical tests physical signs that have been found to be abnormal in some studies of MCS patients. They are listed alphabetically and the cited references are listed the below. Some of these biomarkers are used to confirm the diagnosis of other disorders that commonly overlap with MCS (such as methacholine challenge testing for asthma, punch biopsy for mast cell disorders, blood enzyme testing for porphyrin disorders).
No single one of these tests is considered "diagnostic" of MCS, but if abnormalities are reported or suspected in any of these areas, they should be fully evaluated and appropriately treated. Some of these biomarkers may be abnormal at all times while others wax and wane with exposure. Given that MCS by definition is a disease provoked by chemical exposure, physicians should evaluate MCS cases both before (at baseline) and after an offending chemical exposure Ð either accidentally encountered or deliberately arranged under a doctor's supervision, preferably as a "blinded' exposure to an odorless gas like CO2 if inhaled or a tasteless liquid if ingested. Subcutaneous injections and dermal patches may also be used to test "blinded" reactions to certain chemicals.
Allergy: increased risk of IgE allergies to mold, pollen, dust, dander, etc (Baldwin 1998b)
Blood: low P(a-v)O2 gap due mostly to high PvO2), low P(a-v) CO2 gap due mostly due to low PvCO2,
high 2,3-DPG, low red blood cell mass, low plasma volume, high plasma lactate, some cases involve a genetic pyrvate kinase deficiency in which the carrier state is symptomatic (Wilcox 1996),
Breath: elevated carbon monoxide after standard 23 second breath hold, over 3ppm. This is a sensitive but not specific marker as elevated CO also has been reported in breath of smokers, 2nd hand smokers, people who live with gas appliances or attached garages, and people with chronic diseases of the heart, lungs, blood and brain.
Cardiac: tachycardia, other arrhythmia, mitral valve prolapse (Ziem 1997), abnormal echocardiogram (Bell 1998a, Baldwin 1998a)
Cerebral: reduced blood flow on SPECT (Callender 1993, Heuser 1994), increased resting alpha on qEEG (Bell 1998b)
Circulatory: small vessel vasculitis (punch biopsy of fingertip), nontraumatic thrombophlebitis (Rea 1976, Rea 1977), neurally mediated hypotension (in undifferentiated CFS patients)
Detoxification: impaired function of Phase I (cP450) and/or Phase II detox pathway (Ziem 1997); caffeine clearance, salicylic acid conversion, paracetamol conversion (Monro 1997); low sulphoxidation and low glutathione (Scadding 1988, McFadden 1996, Ziem 1997), low superoxide dismutase and glutathione peroxidase (Ziem, unpublished)
Ears: abnormal brain stem auditory evoked potentials (Cary 1997); tinnitus is commonly reported but not quantifiable
Endocrine: variable hyper or hypo function in thyroid, adrenals and HPA axis (Levin 1987)
Eyes: photophobia as measured by reaction time; dry eyes or weeping tear glands in response to exposure
Gastrointestinal: esophagitis, 'nutcracker' esophagus, increased intestinal permeability, lactose breath test, bacterial overgrowth breath test (Monro 1997)
Immune: chronic T-cell activation, impaired NK cell function, variable auto-immunity especially elevated ANA (McGovern 1983, Heuser 1992, Ziem 1997), reduced secretory IgA and other Ig (Ziem 1999)
Mast Cells: increased number on punch biopsy (Heuser 1996), increased sensitivity to stimuli seen with scratch test, variably abnormal serum tryptase during reactions (Schwartz 1987) Mast cell punch biopsy has 80% SENSITIVITY (second highest of any MCS report), SPECIFICITY > 99%
Minerals: numerous deficiencies, especially magnesium, molybdenum, manganese, zinc, selenium and copper. (Galland 1987, Ziem unpublished).
Musculoskeletal: fibromyalgia tender points (Donnay 1999)
Neurocognitive: impaired learning and/or retention in short-term memory (visual and verbal), attention span and reaction times (Ziem 1997). Abnormalities seen in PASAT, WAIS-R (Ziem 1997), computerized Divided Attention Test (Bell 1995), STROOP tests (Little 1999), Knox Cubes, and in non-dominant hand on Tactual Performance Test
Nose: degraded nasal epithelium, chronic inflammation, rhinitis and sinusitus (Meggs 1993b)
Porphyrin Metabolism: multiple blood enzyme deficiencies, especially ALA-D, PBG-D, UPG-D (Ziem 1997),
Porphyrin enzyme abnormalities have 86% SENSITIVITY (highest of any MCS report), SPECIFICITY > 99%
Respiratory: inflammation in larynx & trachea; abnormal methacholine challenge (Bell 1998a)
Sensory Nerves: altered somatosensory potentials (Hummel 1996), peripheral neuropathy (Ziem 1997)
Skin: rash in response to chemicals and irritants, hypersensitive to touch, vibration, and cold; "loose" skin if pinched
Sleep: frequently disrupted with abnormal EEG (Bell 1996)
Vestibular: impaired Romberg and other balance testing (Ziem 1997)
Vitamins: numerous deficiencies, especially in the B series (Galland 1987, Ziem 1997)
Xenobiotics: various markers of poisoning by heavy metals (lead, mercury, depleted uranium) and pesticides (chlorinated or organophosphate) may be detected in urine, stool, blood, hair and/or fat (Heuser 1992)
Compiled by Albert Donnay, MCS Referral & Resources, adonnay @ mcsrr.org, 410-889-6666, 2/1999, rev'd 8/2000
Baldwin, CM and Bell, IR. 1998a. Increased cardiopulmonary disease risk in a community-based sample with chemical odor intolerance: implications for women's health and health- care utilization. Arch Environ Health 53: 347-353.
Baldwin CM, Bell IR, O'Rourke M, Nadella S, and Lebowitz MD. 1998b. Allergen risk ratios for a community sample with and without self-reports of multiple chemical sensitivity. Chem Senses 20: 661-662.
Bell I.R. Baldwin, C.M. and Schwartz, G.E. 1998a. Illness from low levels of environmental chemicals: relevance to chronic fatigue syndrome and fibromyalgia. Am J Med 105: 74S-82S.
Bell, I.R., Schwartz, G.E., Baldwin, C.M., Hardin, E.E. and Kline, J.P. 1998b. Differential resting quantitative electroencephalographic alpha patterns in women with environmental chemical intolerance, depressives, and normals. Biol Psychiatry 43: 376-388.
Bell, I.R., Bootzin, R.R., Ritenbaugh, C., Wyatt, J.K., DeGiovanni, G., Kulinovich, T., Anthony, J.L., Kuo, T.F., Rider, S.P., Peterson, J.M., Schwartz, G.E. and Johnson, K.A. 1996. A polysomnographic study of sleep disturbance in community elderly with self-reported environmental chemical odor intolerance. Biol Psychiatry 40: 123-133.
Bell, I.R., Wyatt, J.K., Bootzin, R.R. and Schwartz, G.E. 1995. Slowed reaction time performance on a divided attention task in elderly with environmental chemical odor intolerance. Int.J Neurosci. 84: 127-134.
Callender, T.J., Morrow, L.A. and Subramanian, K. 1993. Evaluation of chronic neurological sequelae after acute pesticide exposure using SPECT brain scans. J.Toxicol.Ind.Health 41: 275-284.
Cary, R., Clarke, S. and Delic, J. 1997. Effects of combined exposure to noise and toxic substances--critical review of the literature. Ann Occup Hyg 41: 455-465.
Donnay A. and Ziem G. 1995. Protocol for diagnosing disorders of porphyrin metabolism in chemically sensitive patients. Baltimore, MD: MCS Referral & Resources
Donnay A. and Ziem, G.1999. Prevalence and overlap of chronic fatigue syndrome and fibromyalgia syndrome among 100 new patients with multiple chemical sensitivity syndrome. J.Chronic Fatigue Syndrome. 5:2 [in press]
Galland, L. 1987. Biochemical abnormalities in patients with multiple chemical sensitivities. Occup.Med. 2:713-720.
Heuser, G. and Kent, P. 1996. Mast cell disorder after chemical exposure. 124th nnual Meeting of the American Public Health Association, New York NY, 20 November 1996 [abstract and presentation]
Heuser, G., Mena, I. and Alamos, F. 1994. NeuroSPECT findings in patients exposed to neurotoxic chemicals. Toxicol.Ind.Health 10: 561-571.
Heuser G., Wodjani A. and Heuser S. 1992. Diagnostic markers in chemical sensitivity. In Multiple Chemical Sensitivities: Addendum to Biologic Markers in Immunotoxicology, 117-138. Washington DC: National Academy Press
Hummel, T., Roscher, S., Jaumann, M.P. and Kobal, G. (1996) Intranasal chemoreception in patients with multiple chemical sensitivities: a double-blind investigation. Regul Toxicol Pharmacol 24: Pt 2):S79-86
Levin, A.S. and Byers, V.S. 1987. Environmental illness: a disorder of immune regulation. Occup.Med. 2: 669-681.
McFadden, S.A. (1996) Phenotypic variation in xenobiotic metabolism and adverse environmental response: focus on sulfur-dependent detoxification pathways. Toxicology 111: 43-65.
McGovern, J.J., Jr., Lazaroni, J.A., Hicks, M.F., Adler, J.C. and Cleary, P. 1983. Food and chemical sensitivity. Clinical and immunologic correlates. Arch Otolaryngol. 109: 292-297.
Meggs W.J., Cleveland C.H., Jr. 1993b. Rhinolaryngoscopic examination of patients with the multiple chemical sensitivity syndrome. Arch.Environ.Health 48:14-18.j
Meggs, W.J. 1993a. Neurogenic inflammation and sensitivity to environmental chemicals. Environ Health Perspect 101:234-238.
Monro J.M. 1997. Laboratory tests found to be effective in the evaluation of chemical sensitivity: derived from 12,000 patient evaluations. 32nd Annual Meeting of the American Academy of Environmental Medicine, La Jolla CA, 24-27 October 1997 [abstract and presentation]
Rea, W.J. 1976. Environmentally triggered thrombophlebitis. Ann.Allergy 37: 101-109.
Rea, W.J. 1977. Environmentally triggered small vessel vasculitis. Ann.Allergy 38: 245-251.
Schwartz, L.B., Metcalfe, D.D., Miller, J.S., Earl, H., and Sullivan, T. 1987. Tryptase levels as an indicator of mast-cell activation in systemic anaphylaxis and mastocytosis. N.Engl.J.Med. 316:1622-26
Ziem, G. and McTamney, J. 1997. Profile of patients with chemical injury and sensitivity. Environ Health Perspect 105: 417-436.
For more information, contact Albert Donnay.
Last Modified: 8/8/00
[This Message was Edited on 12/16/2006]
Dumb me. I cleaned the walls in my bathroom with clorox clean up last week. My eyelids swelled and fluid poured out of my ears. AND I KNOW BETTER!!!!!!!
It wasnt great but interesting they did mention people with cfs aswell as mcs.
Thanks for the tip on the AMF products. Where would I get a Needs catalog or find their website? I know that our local health food stores sell the non-toxic cleaning products. I think they are fairly expensive but the alternative is much worse!
While I was in the emergency room they also noticed that my hands were bright red. They brought in a large bucket of saline for me to soak my hands. That stuff probably gets absorbed into the skin. Obviously very dangerous.
baking soda. I'm in the process of selling my condo and I have to clean so often. It's a real pain!
WakeMeUp-Sorry to hear that you had such a bad reaction to Nexium. Was it an allergic reaction?
I once had a blood gas blood test and my blood pressure must have dropped dramatically. I couldn't hold my head up and was on the verge of passing out. They gave me oxygen and I felt better immediately. I also feel that oxygen makes me feel much better. Wish I could get a tank of it!
[This Message was Edited on 12/16/2006]
Hi woofmom & others,
I have all three: CFS, Fibromyalgia & MCS. What a living hell it has been.
I starting seeing a naturopath a couple years ago when I was bedridden most of the day and reacting to almost everything in life. She does an perfected form of NAET (Nambudripad Allergy Elimination Technique) which energetically clears your body permenantly from reacting to allergens.
What a god-send. I was highly doubtful and suspicious b/c I am (was) an Occupational Therapist and accupressure techniques sounded crazy to me. However, it is quite amazing.
The naturopath that I see is excellent and she has been able to clear over 120 allergies in the past 2 years on me.
My health was finally stable enough to get my mercury fillings out last spring and that was another HUGE boost to my immune system and after doing various alternative things to chelate mercury (various herbs from Dr. Overman, Ion Cleanse, Colonics, diet change, energy work, etc.), I finally declared myself to not be housebound last May.
I am still very sensitive to smells but I don't have severe reactions that leave me debilitated with severe fatigue, migraines, pain, GI problems, sinus problems, etc. after exposures. My reactions are mild to moderate and very infrequent now.
Whatever you do...DO NOT believe books that say that you cannot heal from MCS. You can!
KEEP HOPE ALIVE,
existed. I am always looking for unscented everything. I have a heard time finding things like unscented fabric softener sheets, deodorant, etc.
Great site, I sent it to my sister in law who is a P.A. and soon to be Wellness Coach. Her clients would probably also like it. Thanks!
Sorry it took me a little while to get back with you. I don't get on here everyday. Thanks for your patience.
Books on MCS say that there is no cure! THAT IS A LIE! My naturopath and I have both found healing from MCS.
I found out that I had MCS 2 years ago after having CFS and Fibromyalgia for a number of years. The naturopath that I currently see, Denise Rosso, ND, also had MCS 10 years ago but she recovered when she started seeing a D.O. who used NAET (Nambudripad Allergy Elimination Technique) on her. It took her a couple years to recover but she was able to go back to work, then school to become a naturopath and now works full-time as a naturopath. Previously, her parents had to bathe her and take care of feeding her and she had to wear a respirator and she was still ending up in the emergency room 2-3 times a week at times due to allergic reactions.
I started seeing Denise Rosso, ND, 2 years ago. She started doing a perfected form of NAET which she calls ART (Allergy Relief Technique). She developed it herself and no one else knows how to do it. She doesn't share that info. She is able to use an accupressure technique to clear your energy pathways of allergies/sensitivities/or energy blocks using this techniques. IT IS AMAZING!!! I still can't believe it works sometimes. However, I was seeing her 2x/week initially and within a couple months my health started to turn around esp. GI problems. It took 1-1/2 years of treatment until I got to a point that I'm not housebound anymore.
I've also been doing a lot of detoxing over the years which really exaccerbated my fibro pain initially but over time I am almost completely free of pain. I used to get 10+ pain just trying to peel a carrot. I couldn't function at all without severe pain. Now I can chop veggies and fruit and I get no pain...once in a great while I get maybe level 2-3 pain or stiffness but it's mild and rare currently.
When I got my mercury/silver fillings removed last spring, that is when my immune system really got much better and a lot of sensitiives decreased at that point too. I could not use chemicals to chelate the mercury due to my sensitivity to many chemicals and I didn't want to chance it. So I used Dr. Overman's Metal Detox, Nature's Sunshine Heavy Metal Detox, took a number of supplements like Rich Carson recommends, and did ion cleanses and colonics to chelate mercury/metals and toxins from my system.
My health still has a long way to go as I still have pretty severe exertional fatigue. It's the last major problem that I'm left with. I'm currently trying to do as much as I can to eat according to food combining principles but my energy isn't always good enough to eat that way but I'm heading in that direction.
My health isn't perfect and i still have some chemical sensitivities; however, I can go to movies and out in the public now and sit near someone wearing perfume and I don't get severe migraines or severe fatigue from it and it doesn't completely bottom out my immune system now. Once in a while, I will encounter a chemical that gives me a migraine or leaves me fatigued but it's not every single chemical I encounter. I wish I could know what the chemical is so that I could get an allergy clearing on it but that's not always possible to know what exactly affected me when I go out into the community.
Is this what you wanted me to share with you???? If you have any more questions, please email me again and put Monkeykat in the title so I am sure to find your email
Lu - I also wanted to say I'm so sorry for your suffering. I know what it's like to suffer horribly. I don't suffer like I used to which is so amazing. However, now I suffer emotionally still b/c i can't function energy-wise like most normal human beings. I'm sure you have times when you want to give up or wish you were dead. I've had many days like that in the past. Please don't give up. Please keep hope in your heart.
Keeping HOPE alive,
I know that I'm not cured. But, if I completely avoid aspartame and MSG my symptoms are a LOT LESS severe.
Hi Lukro & woofmom,
Your welcome! If you have any more questions, please email me again & be patient as I sometimes don't get on here some weeks.
Woofmom - I'm glad that avoiding aspartame & MSG makes your symptoms a lot less severe. I avoided ALL preservatives and I still try to avoid as many as possible but I definitely still DO NOT use aspartame or MSG. My husband gets as much organic as we're able. Eventhough I had gotten rid of all household chemicals, shampoo, face soap, make-up, perfumes, candles & put a water purifier on the shower head, use purified water to drink, etc., etc., etc. - I was suffering terribly from MCS b/c you just can't avoid every chemical esp. if you have to go out to doctor's appts. I was housebound for nearly 2 years from the MCS part of this illness. So I was REALLY bad and suffered severe fatigue, severe migraines, light & sound sensitivity, heart palpitations, GI problems, pain and many other symptoms from chemical exposures. I couldn't even handle the EMF from talking on the phone and I'd end up severely fatigued after talking on the phone and my immune system would suffer and I'd get ill coughing out yellow bloody stuff.
So anyway, I've come a long way!
Keep HOPE alive, Monkeykat
[This Message was Edited on 12/20/2006]
I did not know her but I read the bio and it looks like she well be sorely missed quite a talent it seems so soory to hear of her passing and that she died from that illness.
how do they test for that I don't think I have ever been has not even been brought up to me I don't think.
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