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Post by Lisa Petrison on Jun 5, 2013 9:13:48 GMT -5
A comment from a Chronic Lyme sufferer: >I too feel better by the ocean. Santa Barbara area is where I have memories of feeling great no matter how bad I felt when I left Jersey. >Warm and dry w/no mold and no ticks works for me. flash.lymenet.org/ubb/ultimatebb.php/topic/1/124614
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Post by Lisa Petrison on Jun 4, 2013 21:42:55 GMT -5
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Post by Lisa Petrison on Jun 4, 2013 0:47:45 GMT -5
The Locations Effect is now on Facebook! Like our page for photos of "feel-great locations" and discussion. www.facebook.com/LocationsEffectIf you have photos of a feel-great place that you would like to share on the page, please let us know and we will help get them up. Paul (Pol) Beith & Lisa Petrison
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Post by Lisa Petrison on Jun 2, 2013 13:29:49 GMT -5
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Post by Lisa Petrison on May 27, 2013 10:37:38 GMT -5
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Post by Lisa Petrison on May 25, 2013 21:30:51 GMT -5
Erik talks about his experiences during the Tahoe Epidemic in the 1980's. vimeo.com/12284015
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Post by Lisa Petrison on May 25, 2013 18:11:46 GMT -5
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Canada
May 21, 2013 12:55:38 GMT -5
Post by Lisa Petrison on May 21, 2013 12:55:38 GMT -5
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Post by Lisa Petrison on May 16, 2013 21:50:29 GMT -5
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Post by Lisa Petrison on May 16, 2013 11:53:31 GMT -5
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Post by Lisa Petrison on May 16, 2013 10:14:50 GMT -5
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Post by Lisa Petrison on May 16, 2013 9:24:35 GMT -5
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Arizona
May 10, 2013 11:13:24 GMT -5
Post by Lisa Petrison on May 10, 2013 11:13:24 GMT -5
"Plant," a member of this board, asked me to add this report.
Diagnosis: Chronic Lyme disease and Large Biotoxin Exposure to Water-damaged building, and since then unable to tolerate around 50% of buildings.
*
Phoenix: 3 May 2013 Was only there at night around 11pm and only was outdoors briefly while walking to board a small plane but it felt like the air was moist and not totally healthy.
The airport seemed fine to me, though. I felt fine in the airport.
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Texas
May 10, 2013 11:09:50 GMT -5
Post by Lisa Petrison on May 10, 2013 11:09:50 GMT -5
"Plant," a member of this board, asked me to add this report.
Diagnosis: Chronic Lyme disease and Large Biotoxin Exposure to Water-damaged building, and since then unable to tolerate around 50% of buildings.
*
DFW: 1 May 2013
Wish I had never gone there. Extremely traumatic and lost most of my belongings again.
Thought it would be fine since I had stayed there prior to getting mold illness/large exposure, but it was awful.
Makes me reconsider my entire life story given that I lived there from age 2-18 and the area might have had a biotoxin problem for a while.
Starting about 30 minutes before landing, I started to feel extremely sick and have muscle problems. I was crying on the plane because I felt so bad. Mild muscle paralysis, feeling very wired, having collagen problems. The mold symptoms I had gotten over started to come back quickly.
The problem was particularly bad while driving south from the airport.
I went to south Fort Worth and the air quality was still bad there. In the past when I'd lived there, I'd commented that it felt like there was a haze of what felt like a hive mind over the area, and I attributed it to other things, but it could have been the biotoxins.
I was doing so poorly and realized if I stayed there too long I might lose my ability to make decisions or travel or might get stuck in a hospital somewhere there, so I booked another flight that evening and went back to Albuquerque.
Once again, something felt terrible for 30 minutes after take-off, but within the next hour or two after that my mold symptoms slowly went away, with the same sensations of immune balancing etc. I had experienced the first time they went away.
I don't plan to go near DFW again, not for an airplane connection - nothing.
*
El, Paso/Juarez: 4 (but only there briefly) May 2013
Stopped in here briefly on the way to the airport.
I didn't find anything wrong with the air quality - felt similar to Las Cruces - but the wind was coming from the east, not the south, where Juarez is.
The airport initially bothered me some but I got used to it and had no problem waiting there.
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Post by Lisa Petrison on May 10, 2013 11:06:20 GMT -5
"Plant," a member of this board, asked me to add this report.
Diagnosis: Chronic Lyme disease and Large Biotoxin Exposure to Water-damaged building, and since then unable to tolerate around 50% of buildings.
*
Albuquerque, NM: 4 April-May 2013
Pretty good. I think I could live here.
I was disappointed when I first got there on a sunny, dusty day around commuter/traffic time, since it's apparent there is some pollution here and maybe a minor biotoxin issue. The basin seems to collect pollution.
The air quality is much worse in the lowest parts, downtown, but there are parts of the city that are higher and have better air quality.
I feel pretty good here and can run and exercise without fatigue. The first time here I found I was able to sprint with almost no fatigue, something very unusual for me.
I found the Best Western at the airport tolerable while initially moving out west to start detoxing (might not be ok for folks who are cleaner or more sensitive).
I have an interesting effect here both times I've come here from somewhere else: a fizzy, bubbly feeling in my body that reminds me of how it feels to take food-grade H202. It seems like a beneficial feeling related to becoming more oxygenated.
*
Las Cruces, NM: 5 April-May 2013
Pretty satisfied with the outdoor air quality here.
There are lots of adobe buildings, some of which are pretty toxic and I had trouble walking through parts of downtown, north of the university.
Very few lawns so not many pesticides as far as I could tell. There was one watered lawn in Dona Ana plaza that gave me problems.
Nice warm weather in April.
I had to drink at least a gallon of water a day. For a few days I felt very toxic and unhappy and then realized I wasn't drinking enough water. I have to have water by my bed to drink early in the morning, too. Dehydration is a risk.
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Post by Lisa Petrison on May 10, 2013 11:03:17 GMT -5
"Plant," a member of this board, asked me to add this report.
Diagnosis: Chronic Lyme disease and Large Biotoxin Exposure to Water-damaged building, and since then unable to tolerate around 50% of buildings.
Boulder, CO -5 April 2013
I literally cried getting off the plane in Denver because the air quality felt so good there compared to Massachusetts.
Had great energy here. Started detoxing mold immediately, and the next day started to feel like a completely different person and have great energy. A day later I was back to running for the first time in years and wanted to go hiking.
I think the altitude was also beneficial. Being able to see beautiful mountains helps too.
I could tell there was "something" slightly wrong with the air, like pollution, but it didn't seem to be biotoxins. Also I had problems with forced hot air in some buildings there. A house that was apparently inspected for mold/EI nonetheless had forced hot air and being there for a few hours contaminated my stuff and then my hotel room.
The Target on that main street (near the big Whole Foods on Pearl Street) was very bad. It gave me a terrible hit and I could barely walk, after just going through the first of two sliding doors and turning around and leaving, not even fully entering the store.
Stayed at the Boulder Outlook.
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Post by Lisa Petrison on May 9, 2013 23:48:32 GMT -5
"Plant," a member of this board, asked me to add this report.
Diagnosis: Chronic Lyme disease and Large Biotoxin Exposure to Water-damaged building, and since then unable to tolerate around 50% of buildings.
Northampton/Amherst, MA/all of Western Massachusetts
3 in the winter 1 in summer
Not much problem outdoors when it is cold.
As soon as the temperature gets over 60 or 70 it becomes awful.
Summers here were terrible. Frequent rains and then there is a big air quality problem as it becomes sunny after the rain. Most of the buildings are old (many 100+ years old) and have what strikes me as wood mold.
The mold there reminds me of stepping into one of those sepia photos from the early days of photography … a very "old" feeling.
Had to evacuate the area suddenly in April 2013 when the outdoor air became so problematic that I was getting mold hits every time I stepped outdoors. Was basically unable to sleep at that time since the outdoor air got into even otherwise safe buildings.
Hardly any of the buildings there have been built in the past 20-30 years.
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Post by Lisa Petrison on May 6, 2013 12:47:30 GMT -5
online.wsj.com/article/SB10001424127887323528404578452763290557802.html?mod=googlenews_wsjMay 2, 2013, 8:22 p.m. ET The $500,000 Housecleaning When a Virginia couple discovered that their townhouse was infested with mold, it was the start of an arduous, expensive multiyear cleanup By SANETTE TANAKA Jenny Guinness of McLean, Va., waited as men in moon suits cut away chunks of drywall in 2-foot increments. They would bag and seal the material, and start again. Soon they had removed the walls of an entire room. A mold remediator sat her down and said: "I have really bad news for you. This looks like it goes in every direction…I think you need to have a demolition company come in and start removing whole walls because I can't see an end to it anywhere." In 2008, Ms. Guinness and her husband, Os, discovered that their townhouse in a suburb of Washington was contaminated with stachybotrys—also known as black mold. That launched a painstaking five-year renovation that cost as much as the couple originally paid for the house and involved ripping out walls, replacing many of the finishes and sterilizing nearly every surface and item they owned. What they couldn't clean, they threw away, including stuffed animals, sweaters and other items from their son's childhood that they were saving for his kids. "I remember standing in the snow in the street in a moon suit, throwing these precious things into a bin," Ms. Guinness says. Almost every U.S. home has at least a little mold, but roughly 47% of homes have more substantial mold or dampness, says William Fisk, senior scientist at Lawrence Berkeley National Laboratory, who has researched mold for more than 10 years. People who are exposed to mold are 30% to 50% more at risk of asthma, coughing and wheezing, he adds. Mold exposure also has been associated with other health problems, such as bronchitis and respiratory infections. Mold in homes hasn't been tracked historically, but certain building practices—like making homes more airtight, installing air-conditioning units and using materials like drywall and oriented strand board, an engineered wood product—have made homes more conducive to mold growth than they were in the past, says Jeffrey May, principal scientist at May Indoor Air Investigations based in Tyngsborough, Mass. Mr. Guinness, 71, a social scientist and great-great-grandson of Dublin brewer Arthur Guinness, has written or edited more than 30 books on subjects such as religion and politics. Ms. Guinness worked as a Vogue cover model under the name Windsor Elliott. She declines to discuss her age and is currently working on her memoir, tentatively entitled "Faces." In 1997, right before their son C.J. entered college, the family downsized from a large home on 5 acres to a 3,000-square-foot townhouse in this well-to-do suburb whose residents include Newt Gingrich and Colin Powell. In 2007, Ms. Guinness was diagnosed with lung cancer. Even after undergoing successful surgery, she still had trouble breathing in the house and, in early 2008, decided to test the home for mold. She discovered that black mold had streaked the firewalls and settled in thick clumps near the floor. The breadth of the mold shocked Ms. Guinness, who says she normally keeps her home spotless. "You could scrape it off with a spoon," she says. John Spangenberg, production manager of Columbia Restoration, a fire and water restoration service in Jessup, Md., broke the initial news to Ms. Guinness. He says the McLean townhouse had one of the worst cases of hidden mold he has seen in his 13-year career. "Most of the time when we deal with mold, you can usually find a stopping point. In her situation, the stopping point was after every wall was out," he says. The exact cause and time of the initial mold growth is uncertain. Ms. Guinness says her lawyers believe the mold likely began growing when the house was first completed in the late 1980s. The experts found rain streaks on the firewalls, suggesting that the townhouse may have been rained on before the roof and walls were put in, she says. Virginia is a "buyer beware" state, meaning that homeowners aren't legally required to disclose a mold problem. Mold can be such a detriment to a home's value, though, that homeowners are almost always better off paying to remediate or even tearing the house down and starting from scratch, says appraiser Donald Boucher, president of Washington, D.C.-based Boucher & Boucher. Often "it can cost more to renovate a house than it would cost to build it new. You're better off knocking it down," he says. With a townhouse, tearing it down wasn't an option, the couple says. "The simple fact was, unless we renovated it, we couldn't sell it," Mr. Guinness says. For three years, as the mold was eradicated from their house, Mr. and Ms. Guinness split their time between the U.S. and the U.K., staying with friends while cycling through three remediation companies before finding one they were satisfied with. "We would go to the U.K. and then come back and have to tear out the work," she says. As the couple had to assume everything was infested with mold, Ms. Guinness took on the task of deciding which of their belongings to clean and which to throw away. They were able to salvage the wooden furniture and some antiques, but anything made of fabric—all the mattresses, couches, soft furnishings, carpeting, drapes and linens—were thrown out. They replaced the doorknobs, tile, grout, railings and roof as well. The mold also had penetrated Mr. Guinness's extensive collection of books. He threw out roughly one-third to one-half of them, many of which were annotated, and the rest have to be hand-cleaned individually by running a vacuum over the spine and sides. Thousands of books are still in storage, Mr. Guinness says. For Mr. Guinness, the harder sacrifice was having to leave his home for so long. It "was that sense of dislocation and losing our roots, that was the worst thing. We stayed in 15 different homes in the first year," he says. People stepped in to help. Several companies gave them contractor or decorator discounts, or lower prices if they bought items off the floor. Neighbors and friends offered places to stay and general assistance. To Ms. Guinness's knowledge, none of her neighbors experienced any problems with their health or home. "We could never have made it without them," she says. The total renovation cost $478,500, as much as the house itself, which was $479,000, according to public records. Ms. Guinness estimates that they spent $107,000 just on getting rid of the mold alone: $17,000 on testing, $70,000 on remediation and $20,000 on cleaning. Since their insurance doesn't cover mold, the couple paid for the renovation themselves with their retirement savings. "We read about people who did mold lawsuits and how many lawyers you had to go through and how many experts to go through," Ms. Guinness says. "We just didn't think we could face this. We were already fighting something." Generally, mold isn't covered under most homeowners insurance policies because it's considered to be a maintenance issue, says a spokesperson for the Insurance Information Institute. In January 2012, Ms. Guinness decided to stay in the U.S. full-time to oversee the rest of the work on her home. After the mold was removed, the majority of walls had to be rebuilt from the studs and painted. Some rooms got a more drastic overhaul, with new flooring, doors and countertops. Drawing from her experience as a real-estate agent for 10 years, she served as her own general contractor and interior designer. She hired a plumber, electrician, painter, carpenter and general help. "This has been a full-time job," she says. "I couldn't have done it without the Lord sustaining me." The result: a brighter, more spacious, three-bedroom, 3½-bathroom townhouse that is, in many ways, an improvement over the former space. The former kitchen had dark wood cabinets and laminate counters. Ms. Guinness went with a French country-style kitchen with nickel faucets, oak floors and marble counters. The bathrooms used to have builder-grade cherry cabinetry, laminate counters and cream-colored tile. She replaced them with stone, marble and various hardwoods. She also made small structural adjustments to the home, including raising the ceilings in the guest room and study. Ms. Guinness says she now has no problems with the air. She also believes their ordeal can only help their home's value. She installed a Swiss-made IQAir air-filtration system for roughly $20,000, the same system used by some Hong Kong hospitals in their fight against SARS. "I honestly feel like this house is the safest house in Virginia," she says. Still, the home isn't complete. Furniture needs to be ordered; artwork must be hung. They still have more than 30 boxes in storage to sift through—not to mention thousands and thousands of books. "It has been such chaos and one urgent priority after another," Mr. Guinness says. "I'm looking forward to just being normal."
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Post by Lisa Petrison on May 5, 2013 9:11:07 GMT -5
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Post by Lisa Petrison on May 4, 2013 20:05:33 GMT -5
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Post by Lisa Petrison on May 4, 2013 20:03:21 GMT -5
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Post by Lisa Petrison on May 4, 2013 13:56:01 GMT -5
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Post by Lisa Petrison on May 4, 2013 12:09:37 GMT -5
Here is a description of my Extreme Avoidance experience, to be sung to the tune of Stephen Sondheim's "I'm Still Here" (from the Broadway show "Follies"). I am interested in having this made into an audio recording and am willing to pay to make this happen. If anyone is interested in helping, please let me know. * Permission to share freely with attribution. "Good Days & Bad Days" Lyrics By Lisa Petrison Lyric Structure and Music by Stephen Sondheim Good days and bad days, I've seen them all And, my dear, I'm still here. Big cities some days, Some days just grizzlies and deer, but I'm here. I've done avoidance as extreme. Ten showers daily, quite the scheme. Seen all my stuff disappear, but I'm here. I've camped in rainstorms, plus I got bit by a tick, but I'm here. Tents broke in windstorms Then I got doused with the ick, but I'm here. Folks say with mold, I am obsessed On roads potholed throughout the West. Out in the desert was I depressed? Nowhere near, I found a place to get clear, and I'm here. I've done some doxy, AV’s and strict gluten-free, and I'm here. Cleanses with coffee, Deplin and Vitamin C, and I'm here. I tried some neural therapy, IV’s and homeopathy, CSM packs and Three Lac, and kefir. I sat through Dr. Judy, and I'm here. I've traveled through Dallas, and Tahoe, and Ann Arbor, Mich. Gee, that was fun and a half. When you've been through Dallas, and Tahoe, and Ann Arbor, Mich., Anything else is a laugh. I've been to Bozeman, I've braved the Death Valley heat -- and I'm here. Froze off my toes, then Hiked in the hope I’d excrete -- and I'm here. Up all night dodging algae blooms, Forced from my lodging by mold plumes. “You’re just making up miasma fumes,” people jeer. Still the effects, they’re severe, so I’m here. New bedding one day; Next day, it goes in the trash -- but I'm here. Feel great on Monday; Tuesday, slammed down in a crash -- but I'm here. Buy a Casita or a Scamp, Then it feels toxic, so tent camp. Then you appear to revere what’s austere. I’ve run through all my money, and I'm here. I've gotten through unmasking and the depression response, Suicide season, heart pains. And better yet, now it’s intensification response, Rashes, mind blanks and migraines. Good days and bad days, I've seen 'em all And, my dear, I'm still here. Big cities some days, Some days just grizzlies and deer, but I'm here. I've come to crave the GFD* Screw fear, and dammit, C'est la vie. I hit the total nadir, and I'm here. Lord knows it’s really been queer, but I'm here Look who's here! I'm still here! * GFD = Godforsaken Desert www.youtube.com/watch?v=U0aed46yuyA&ytsession=gLMqx_NTrePCT-n-fK2a82wiAIL_SDFpEWkBtFM5ICRzvBpu4wGuLELiQBk9TFg7jeImGw5E9LAbZX9AiacRUzQG4HiRPPeGHV9beQuVAdWQ393mCjOxoKp0rXAM6mX3CCB6zsatvI8myUASfyVN-PAPvM6FhjOUCDnPmdd5xyoUXytN0MPqIgPy7ti9vOHyEWYLAWWe1P1Aw1X7FjCZwaofRJL0UshMmx_oZefo0JzxN86kNon7uhSYITinSLwwPm4h2rsSFEXETMP7spStUaXkP50QJpxQAc7DxIcIjvuI_vCqxkDhgw-v2QUqyJ7V9m7vA12koASRa03o9jhkcFZj8DxFpIsq3pOxJJGRn4if1MCgXAVg7YqbV_qB3kdjdhLwnMINGM6L4rEZdoMogXc-GMIN1fvwnf9OFZgqwVBzpfZSxXam-UwuKH4qAhy593hjoOoVtlGMVp1r7OMrM-1x0saGYZIHWsorF4w5zDZsUvx1Th50-1p_IA-UKKC-OexN23yQbdSBZqhZs1YRNjUvmpoo28UrkREjfthkHtriI9x5ZLoLapje02djRnln4L3jC0zalAf67iFnQfqf6sm3GFYcGJgTZWIEzKAvSQw*** Original Stephen Sondheim Song -- "I'm Still Here" Good times and bum times, I've seen them all And, my dear, I'm still here Plush velvet sometimes
Sometimes just pretzels and beer, but I'm here
I've stuffed the dailies in my shoes
Strummed ukuleles, sung the blues
Seen all my dreams disappear but I'm here.
I've slept in shanties, guest of the W.P.A., but I'm here
Danced in my scanties
Three bucks a night was the pay, but I'm here
I've stood on bread lines with the best
Watched while the headlines did the rest
In the depression was I depressed?
Nowhere near, I met a big financier and I'm here
I've been through Gandhi, Windsor and Wally's affair, and I'm here Amos 'n' Andy, Mah-jongg and platinum hair, and I'm here
I got through Abie's Irish Rose, five Dionne babies, Major Bowes
Had heebie-jeebies for Beebe's Bathysphere.
I got through Shirley Temple, and I'm here
I've gotten through Herbert and J. Edgar Hoover
Gee, that was fun and a half
When you've been through Herbert and J. Edgar Hoover
Anything else is a laugh
I've been through Reno, I've been through Beverly Hills, and I'm here.
Reefers and vino, Rest cures, religion and pills, and I'm here
Been called a Pinko commie tool, Got through it stinko by my pool
I should've gone to an acting school, that seems clear
Still someone said, "She's sincere", so I'm here
Black sable one day, next day it goes into hock, but I'm here
Top billing Monday, Tuesday, you're touring in stock, but I'm here First you're another sloe-eyed vamp
Then someone's mother, then you're camp
Then you career from career to career
I'm almost through my memoirs, and I'm here
I've gotten through, "Hey, lady, aren't you whoozis?
Wow, what a looker you were"
Or better yet, "Sorry, I thought you were whoozis
Whatever happened to her?"
Good times and bum times, I've seen 'em all
And, my dear, I'm still here
Flush velvet sometimes
Sometimes just pretzels and beer, but I'm here
I've run the gamut, A to Z
Three cheers and dammit, C'est la vie
I got through all of last year, and I'm here
Lord knows, at least I was there, and I'm here
Look who's here, I'm still here Shirley Maclaine Version from "Postcards from the Edge": www.dailymotion.com/video/xnlgkl_shirley-maclaine-i-m-still-here_shortfilms#.UYU8IY5OTzIAnn Miller Version: www.youtube.com/watch?v=hYn_wDC3mKA
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Post by Lisa Petrison on May 4, 2013 11:35:22 GMT -5
Here is a summary of my illness and recovery history, as of early 2012. I will do a revision sometime in the near future. Attachments:
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Post by Lisa Petrison on May 4, 2013 10:27:52 GMT -5
2006 Successful Treatment of my Chemical and Electrical Sensitivity Lisa Nagy, MD (Dr. Lisa Nagy received her medical degree at Cornell Medical College. She followed that with training in surgery and later in emergency medicine, in which she is board certified. She is currently studying environmental medicine. We asked Dr. Nagy to share her incredible story of chemical and electrical sensitivity and recovery, and of the dental metals that were behind her problems.) The science and art of medicine is much more complex than we presumed in medical school. Although disbelieved, environmentally ill patients are becoming a very large percentage of the population.Many of us go unrecognized because we are 'masked' and cannot tell we are ill from the detergents, perfumes and chemicals we are wearing everyday. I developed chemical and electrical sensitivity while living in a house in Los Angeles. Initially, I only knew I was sad, had weak muscles and couldn't stand up for very long -- it soon seemed I was crying all the time. I couldn't bear to use the telephone or to be under fluorescent lighting. Exposure to smells, chemicals, many foods (like wine, cheese, and nuts) and even antique wood -- which is faintly moldy -- gave me a headache and made me feel exhausted. Clothing tags became extremely irritating, and perfume and diesel odors were intolerable. I had grown hypersensitive to my surroundings. Adrenal insufficiency was eventually diagnosed in myself and later in my husband. In time I was fully disabled and my incredulous husband and I sold our house and moved to a rental nearby. We were hundreds of thousands of dollars in debt. A year later I found that I had been suffering mold poisoning, primarily due to mold in a huge fish tank that was built into the living room wall of that first home. The toxins in the air had overloaded my system and made me intolerant of all chemicals, especially pesticides. A muscle biopsy showed that I had severe damage to my mitochondria, the energy producer in all our cells. What I had is called chemical sensitivity or environmental illness. It is common but somewhat invisible. And this medical condition is not rare. Prevalence studies in California and New Mexico found that 16% of the respondents reported being chemically sensitive. Additionally, in New Mexico 2% of the respondents reported having been diagnosed with multiple chemical sensitivity (MCS) -- the more severe form of chemical sensitivities. In California, 3.5% reported having been diagnosed with MCS. Although women report being chemically sensitive twice as often as men, which contributes to its "hysteria" label, those reporting chemical sensitivities are otherwise evenly distributed with respect to age, education, income, and geographic areas. Chemical sensitivities are also evenly reported among ethnic and racial groups, except for Native Americans, who reported a higher prevalence in both studies. Further, about 15% of those who are chemically sensitive have electrical sensitivity as well. Electrical sensitivity sounds wacky, I know, but when you have it, it is very real and quite uncomfortable. My hand would heat up while holding my cell phone. My ear would burn from the ear piece. Gadgets that spin, like fans or tape decks, have high electromagnetic fields and they made me weak. Just picking up the regular phone could make me need to urinate, or cause chest discomfort and sweating -- I wanted to hang up! Even more bizarre and scary: while swimming in a salt water pool I would get electric shocks in my fingers as I swam by the underwater pool lights! Another condition is diagnosed: dysautonomia At this time I was also diagnosed with an interesting neurologic condition called dysautonomia, which occurs in 85% of people who are "environmentally ill." Crossing ones legs while standing is an early sign, or wrapping the legs around each other (called "pretzel legs"). These moves are done to keep the blood in the head and chest, otherwise the blood would pool in the legs and cause weakness or fainting. Exposure to chemicals in stores (like formaldehyde while shopping in Home Depot) would make me dysautonomic and electrical appliances would make me even more dysautonomic; I would need to lie down. I was prescribed a vasoconstricting (causing the blood vessels to narrow) medication called Midodrine to remedy this condition, as well as a volume expander (Florinef; a mineralocorticoid). Finding help Near the end of my rope, I eventually figured out that I needed to be treated by an environmental physician, and I went to The Environmental Health Center of Dallas to see William Rea, MD. I was encouraged that after this treatment I was partially better. (You can find a local physician at www.aaem.com/. I suggest you consider this if you suffer from chronic illness or obvious environmental illness such as chronic fatigue, fibromyalgia, allergies, adrenal fatigue as well as chemical sensitivity. They look into the genetics of your detoxification capabilities, study your autonomic nervous system and hormone levels, do food and other allergy testing and treatment (neutralization), prescribe vitamins and nutrients orally and intravenously, and test your immune system scientifically. Most importantly, they get you away from that which is making you sick! Sauna treatments are often an integral part in the treatment process for detoxification. It is important to start with a short time interval (such as five minutes) initially and build up as needed. Saunas should be used under the care of a doctor, as the detoxification process can result in increased symptoms if it is pursued too aggressively. Oral galvanism uncovered Oral galvanism is a state in which two dissimilar metals in the mouth result in abnormal electrical charges. I had already had all of my amalgam ("silver") fillings removed, or so I thought. But then I went to a holistic dentist (see www.iaomt.org/) for an assessment. An oral potential meter (made by Pertec) was used to measure the voltages and currents in my teeth. I had a number of crowns with porcelain over metal. Most crowns had currents of 1 micro ampere or so. But one of my crowns showed a current of 11 microamperes -- and a very high electrical voltage of 420 millivolts! I had that crown removed first, because one is supposed to remove the highest ones first. Voila! I hadn't anticipated any immediate response but when I reached home and I was able to talk on the phone for three hours instead of three minutes! I no longer needed Midodrine to get up out of bed! I had required it to raise my blood pressure for two years straight -- and now none! Other improvements: the smell of cigarettes seemed almost pleasant instead of making me run for the hills. I could tolerate car exhaust and perfume immediately! I contacted many environmental physicians and patients to tell of the amazing positive change in my illness over night! The dentist discovered that I'd had an amalgam filling under the metal crown that had been placed just before I became really ill back in 2000. The two dissimilar metal materials touching had created a strong battery effect, causing the oral galvanism that seemed to short out my autonomic nervous system. Somehow, fixing the autonomic nervous system also led to a more normal central nervous system interpretation of odors and electrical fields, allowing for a return to a more normal life! My adrenal function also returned, thanks to the decrease in stress or total body load. In retrospect, getting away from the "bad" house was essential, but removing the crown and the amalgam under it was the last step in getting well. Advice from Dr. Nagy I have ended up on Martha's Vineyard, Massachusetts, where the air is clean and the mold is everywhere! I write articles on the subject and help people who are referred for environmental illness get to an environmental physician before they end up so mentally impaired that they won't be able to cooperate with the treatment. Initially, people tend to deny that they have chemcial sensitivities. It takes a couple of months to grasp it. Lay people are much better at :getting it -- doctors are incredulous and rude. As Sherry Rogers, MD, advises: "Don't waste your time trying to convince every physician you meet about this. It is a waste of your limited energy!" This is very important. Most doctors won't listen to you, so don't even try. Many family members will abandon you. Many people reading this newsletter will have already experienced this, I'm sure. Don't forget to look into dental issues. I have interviewed many patients, especially those with psychiatric issues or symptoms of electrical sensitivity, who have become well after removing their high voltage dental work. Bizarre, eh? I guess too much electricity next to the brain is not a good thing. It is easy to check one's dental currents, and I suggest that all chronically ill patients consider removing their amalgam fillings, any crown with an underlying amalgam, and any crown or filling with an electric current greater than 1 microampere. My advice to you is: Do not give up on your health until you get well. Each practitioner (alternative therapist, environmental physician, or holistic dentist) has something different to offer. I was helped, and someone can help you as well.
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Post by Lisa Petrison on May 4, 2013 10:24:00 GMT -5
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Post by Lisa Petrison on May 4, 2013 10:08:52 GMT -5
Here is a collection of writings by Erik Johnson, dating from 2000 to 2010. It is titled, "The Role of Toxic Mold in Chronic Fatigue Syndrome." www.mediafire.com/?7q51cmehrhmets9
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Post by Lisa Petrison on May 4, 2013 9:59:22 GMT -5
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Post by Lisa Petrison on May 4, 2013 9:17:55 GMT -5
Here is Jeri Kurre's testimony to the CFS Advisory Committee (to the Secretary of Health) in Washington, D.C., in 2012. www.youtube.com/watch?feature=player_embedded&v=EbcR9f7hwow#at=11* It has been 27 years since the CDC was sent to investigate this illness and yet, here we are with no cure, no treatments, no help whatsoever for a disease that would more aptly be be described as Chronic Torture Syndrome, rather than it’s given name Chronic Fatigue Syndrome. Naming a severely disabling, life-destroying disease Chronic Fatigue Syndrome…..what a sick little joke that was. However, that IS the name that the CDC decided to give to a typical outbreak of ME Plus… Myalgic Encephalomyelitis, plus the additional evidence of never before documented immune abnormalities collected by Drs. Cheney and Peterson. We must not let that be forgotten. CFS is the name given to a disease entity of ME Plus. It IS NOT and has never been a social construct, an illness devoid of evidence of severe pathology, or a description of tired people. Chronic Fatigue Syndrome does not and has never had anything to do with fatigue. The lack of meaningful research on CFS has created an epidemic. The CDC is still claiming that the research program involving their infamous Georgia study (you know, the one where they got their “patients” by random telephone surveys) has according to them “greatly increased knowledge about CFS and has helped the health care community develop viable treatments”. That is complete hogwash. It has done neither. I suppose that is to be expected from an agency that has spent nearly 30 years trying to frame a severe neuro-immune disease as a psychological defect. They have wasted what little paltry pittance of research dollars allocated towards this heinous disease on garbage studies like the ones that claim that childhood trauma is a risk factor for CFS and that CFS is associated with an increased prevalence of personality disorders, even though psychiatric conditions are an exclusion for CFS. I’d argue that there is evidence that personality disorders seem to be a risk factor for employment at the CDC. CFS is the term coined in response to a severely debilitating illness with evidence of profound immunological abnormalities. Try working with the evidence instead of inventing psychological drivel, or at the very least, if you are not going to help us, at least stop lying about us. I developed CFS in 2006. I would never have guessed that what I have would be called Chronic Fatigue Syndrome. Fatigue was the least of my problems. I was experiencing episodes of being unable to move my arms and legs. Days that I was so weak that I had to crawl to the bathroom. Pain so severe that the touch of my clothing was excruciating. Head and neck pain that made it feel as if I had been beaten with a baseball bat. New onset dyslexia. Loss of short-term memory. Frequent syncope. Racing heart rate. Frequent syncope. Seizures. NKC numbers so low that my doctor first thought it must be a lab error. I lost my career, my friends, and my independence. On the rare occasions when I was having a “good” day, I sometimes tried to venture out. I knew not to try to go too far, or I’d never make it back. I also knew that I would pay for my time out by an extreme increase in all symptoms by the next day and that I would be bedridden thereafter indefinitely. I would usually use my outings to go drive to the local grocery store just a few miles away. Often when I’d arrive, I would park my car and suddenly realize that I had no memory of how I got there, why I came, or how to find my way back home. Most days though, were spent in bed, too weak to do anything but lie there in pain. As the days slip away and turn into weeks, then years, you cease to exist to the rest of the world. For the severely ill, chronically bedridden, you eventually come to the realization that you are already dead to the rest of the world. If you want to know why so many CFS patients commit suicide, here it is: There are things far, far worse than death. We are all aware of the stigma associated with the name Chronic Fatigue Syndrome. The public views us as lazy slugs who won’t stop complaining about being tired from normal life stresses. I suppose we can’t really expect any other outcome after an almost 3 decades long propaganda campaign by the very people who are supposed to be helping us. Who instead continue on with their ceaseless efforts to mislead, deceive, and bury the facts. Let me make something perfectly clear. The illness entity known as CFS, based on an outbreak of ME Plus, has never been fully investigated by anyone. Not one researcher has examined all of the evidence that caused the creation of this syndrome. NOT A SINGLE ONE. After nearly 30 years. This is a disgrace of epic proportions. A disease that has brought brutal,relentless suffering to now millions of people and yet we have evidence that has been around since the inception of the syndrome that has never been examined. The reason that I am able to be here today is because I have been fortunate enough to be able to utilize therapeutic strategies based on evidence that has been ignored for over a quarter century. Incline Village survivor Erik Johnson, who served as a prototype for the syndrome, noticed a peculiar phenomenon in regards to biotoxins. He devised a strategy in response to it which enabled him to achieve such an astounding recovery that he is able to climb mountains. Thanks to his work and persistence there are now quite a few CFS patients who have used his techniques to achieve recovery. We are not cured. However, many of us who were severely disabled are now able to live near normal lives. I think that it’s about time that researchers start looking into this. It seems to me that discarding evidence for decades on a horrific, life-destroying disease is downright negligent. I want to know why NO doctors and NO researchers are telling patients about this. If it had not been for Erik Johnson, I would either be dead or at home still rotting in my bed. So, to him I would like to say this: with all of my heart and soul, thank you for helping me. …..And to all of you CFS researchers who claim to be unaware of this particular evidence, I want to say this: You are now. What are you going to do about it?
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Post by Lisa Petrison on May 4, 2013 9:13:21 GMT -5
Jeri Kurre began pursuing extreme avoidance in 2011. Here is a summary of her early experiences. * I am the ME/CFS patient from WV who recently went tent camping in Death Valley for 10 days. I am not suggesting that anyone else do this, just sharing my experience. I experienced a near full remission while there and went back to baseline upon returning home (before I entered my house). I am mostly housebound, meaning that I am able to leave my home for short periods of time, knowing that the more I do, the more time I will spend laid up in bed recovering. I am XMRV positive by virus culture per VIPdx. I have multiple reactivated viruses, low NKC function, OI, POTS, PEM, multiple endocrine abnormalities, cognitive difficulties, etc. While in DV, nearly all of my symptoms disappeared. No PEM. NONE. No POTS. No OI. My pain went from an 8 to a 2. Alcohol and sugar intolerance disappeared. My daily headaches disappeared. My ability to sweat and tan normally returned. I take a beta blocker for POTS symptoms. I forgot to take it on my second day in DV. That evening, I it dawned on me that I hadn't taken it. Since I had been hiking and swimming that day and had no POTS symptoms, I decided that I would not resume taking it (Bystolic) unless my symptoms returned. They did not. By the end of the week, I was hiking several miles a day, with no PEM and no POTS . Upon returning home (within 24 hours), my resting heart rate went back up to 140-150 bpm, palpitations returned, and shortness of breath with minimal exertion. This is a real phenomenon and desperately needs serious investigation by researchers. Patients deserve to know about this. If it were not for Incline Village survivor and CFS prototype Erik Johnson, this crucial information would have disappeared. Thankfully, he has chosen to keep talking about it for decades even though his words are mostly ignored or met with hostility.....because it's the right thing to do. Researchers and medical professionals have no right to ignore evidence. When you investigate something, you are supposed to consider ALL of the clues. It was beyond wonderful. My drastic improvement was shocking to me. The best I was hoping for was a small amount of relief of any kind. I was not expecting to feel normal or to be able to be so physically active. I didn't think it was possible to ever feel that good again. I do not think that lack of EMFs or chemicals are the reason I improved so much. I had tried something like this before in another very clear and pristine place and felt slightly better, but nothing near normal. The difference this time, was that I slept in a tent, rather than a room, and I took no contaminated possessions with me. Just to be clear, I am not trying to get everyone to do this. Also, I did not go alone. My husband came with me to help. There is no way that I could have made the trip by myself. Had I not improved so quickly and dramatically and I had been alone, it could have turned into a disaster. The desert (especially this time of year) is not the place to be if you are physically impaired and have no one to help you. Now that I am back home and feeling like horrible s*@% again, I am slowly trying to get my things into storage. Then, I plan on trying to find a decent spot in my area to tent camp to see if I improve. If that doesn't work, then I am planning on moving. There is no way that I can go back to this living hell now that I know there is a way out. I had forgotten what it felt like to feel good and I will do whatever I have to to get that back. www.mecfsforums.com/index.php/topic,7402.msg89216.html#msg89216 * She wrote elsewhere: "I've been hiking all day every day, swimming too, even squeezing in a little beer drinking. I can hardly believe it. I thought I'd never be able to do any of these things again."
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