EI/MCS/Chemical reactivity /COPD

[anewbiewannabe]

Thought I better add a caveat about using fresh lemons for mosquito repellent----it works well when nothing else is available for those who are least likely to be bitten---the lemons were a blessing when I was in the Amazon Rainforest. I'm not the one they go to when there are others around. It's good to hang out with people who are better bait---kinda like if you are running from a bear you want whoever is with you to be slower than you, or in the case of mosquitoes, tastier.

I do make a spray with essential oils instead of using standard chemical repellent, but used the lemons before I came up with the spray. I can't go anywhere near citronella, even in just oil form and not candles. I need to see if I can still deal with tea tree oil since it's a better deterrent for ticks than the other oils.

I went to the grocery tonight at an odd hour for me. Ugh! I could smell the cleaning stuff and also had a perfume cloud walk past me. The funny part was I had gone in to pick up a new inhaler. LOL I need to research the masks soon. I wonder if the doctor coded it right whether insurance might pay for one?

I haven't gotten a chance to check out the websites yet, but plan to in the near future. If the rain keeps up it will keep me indoors so I'll have more opportunity. Oh, I react to mineral oil and glycerin so if you've spent any time reading labels for personal care products....yeah, at least one of those is in just about every one of them.

Anyhow, my internet is having fits so I'll close for now.

 

[Ella1]

"I went to the grocery tonight.  I could smell the cleaning stuff and also had a perfume cloud walk past me. ... I had gone in to pick up a new inhaler. LOL
I need to research the masks soon.
I wonder if the doctor coded it right whether insurance might pay for one?"

I went to Joanne's fabric store Wed. Haven't been for years. Started reacting within minutes (not just respiratory either) Left, but was able to go on with other errands. Thursday, non-functional early AM to after 6PM when it began to subside. On O2 all day and sitting, doing nothing... Joanne's was the only unfamiliar place/event.  Some reactions are immediate or almost, others delayed.

The doc not only needs to diagnose and bill correctly, he needs to write a prescription for you.  Call your insurance co. and ask.  Notice too, how the doc defines you: temporarily or permanently disabled, totally or partially.  He has AMA guidelines that define those aspects.
For me, the reactions to chemicals totally and permanently disables me, as does COPD.

Here's more info. I found these other codes, while looking in my files for ADA information that might help you immediately.  You may want to look at that site to see if you can find others that fit YOUR circumstances.   http://www.icd9data.com/2014/Volume1/default.htm

From   http://www.icd10data.com/ICD10CM/Codes/G00-G99/G89-G99/G93-/G93.40
2015 ICD-10-CM Diagnosis Code G93.40
Encephalopathy, unspecified

   2015 Billable Code

   G93.40 is a billable ICD-10-CM code that can be used to indicate a diagnosis for reimbursement purposes.
   On October 1, 2015 ICD-10-CM will replace ICD-9-CM in the United States, therefore, G93.40 - and all other ICD-10-CM codes - should only be used for training or planning purposes until then.
   This is the American ICD-10-CM version of G93.40. Other international ICD-10 versions may differ.
Diagnoses numbers
http://www.national-toxic-encephalopathy-foundation.org/icd.pdf
ICD-9

272.7 Chemically induced lipidosis.
293.83 Mood Disorder with Depressive Features Due to Toxic Exposures
310.8 Cognitive Disorder Due to Neurotoxin Exposures
323.7 Toxic encephalitis.
349.82 Encephalopathy due to chemical toxin.
372.73 Conjunctival Edema - Chemosis of conjunctiva; Subconjunctival edema
380.22 Acute chemical otitis external.
506 Respiratory conditions due to chemical fumes and vapors.
506.0 Acute chemical bronchitis.
506.1 Acute chemical pulmonary edema.
506.2 Inflammation due to fumes and vapors.
506.3 Respiratory conditions due to chemical fumes and vapors, other.
506.4 Chronic respiratory conditions due to fumes and vapors.
506.9 Respiratory conditions due to chemical fumes and vapors, unspecified.
507.8 Pneumonitis Due To Other Solids And Liquids: Detergent asthma
530.1 Chemical esophagitis.
530.2 Chemical induced esophageal ulcer.
580-629 Diseases Of The Genitourinary System
590-599 Other Diseases Of Urinary System692.4 Contact dermatitis from chemical product.
796.0 Symptomatic drug toxicity from drug or poison – See Table of Drugs and
Chemicals.

And the 989.89 2015 ICD-9-CM Code 989.89[convert to ICD-10-CM]
Toxic effect of other substance, chiefly nonmedicinal as to source, not elsewhere classified

AMERICANS WITH DISABILITIES ACT / 504

The ADA /504 not only protects disabled people who need accommodations,  and “qualified” people-(those who can work with a qualifying disability)
http://www.ok.gov/odc/A.D.A/Fact_Sh...a_Qualified_Individual_with_a_Disability.html

Under the ADA, an individual with a disability is a person who has:
1. a physical or mental impairment that substantially limits one or more major life activities;
2. a record of such an impairment; or
3. is regarded as having such an impairment.
Major life activities: Major life activities include, but are not limited to, caring for oneself, performing manual tasks, seeing, hearing, eating, sleeping, walking, standing, lifting, bending, speaking, breathing, learning, reading, concentrating, thinking, communicating, and working.

A 1999 consensus statement recommends that MCS be diagnosed according to six standardized criteria:[2][35]
1. Symptoms are reproducible with repeated (chemical) exposures
2. The condition has persisted for a significant period of time
3. Low levels of exposure (lower than previously or commonly tolerated) result in manifestations of the syndrome (i.e. increased sensitivity)
4. The symptoms improve or resolve completely when the triggering chemicals are removed
5. Responses often occur to multiple chemically unrelated substances
6. Symptoms involve multiple-organ symptoms (runny nose, itchy eyes, headache, scratchy throat, ear ache, scalp pain, mental confusion or sleepiness, palpitations of the heart, upset stomach, nausea and/or diarrhea, abdominal cramping, aching joints).

 

[anewbiewannabe]

Ella1, thanks for all that information. I forgot to take it with me to the doctor last visit but I have to go again next week so hopefully will remember it. I definitely need to make sure I have things coded in my files with the medical portal stuff now and for other reasons. I'm not sure where the past month has gone.

I had to go to urgent care this week as I don't have the time for a regular doctor appointment. I was there because I had bronchitis ---I still don't feel very good so may not make much sense---why I'm not commenting anywhere else for now.

Anyhow, they had those little masks with the loops that tuck behind your ears for those with coughs. I had to wear one and even though it was a very cool day I was overheating in minutes from wearing the mask and breathing hot air. I always have it, even in cold air. Does anyone else have this issue with masks? Found ways to deal with/work around this issue?

Thanks!

 

[Brian_and_Jesse]

Thought I better add a caveat about using fresh lemons for mosquito repellent----it works well when nothing else is available for those who are least likely to be bitten---the lemons were a blessing when I was in the Amazon Rainforest.  I'm not the one they go to when there are others around.  It's good to hang out with people who are better bait---kinda like if you are running from a bear you want whoever is with you to be slower than you, or in the case of mosquitoes, tastier.  

I do make a spray with essential oils instead of using standard chemical repellent, but used the lemons before I came up with the spray. I can't go anywhere near citronella, even in just oil form and not candles.  I need to see if I can still deal with tea tree oil since it's a better deterrent for ticks than the other oils.

I went to the grocery tonight at an odd hour for me. Ugh! I could smell the cleaning stuff and also had a perfume cloud walk past me.  The funny part was I had gone in to pick up a new inhaler. LOL  I need to research the masks soon.  I wonder if the doctor coded it right whether insurance might pay for one?

I haven't gotten a chance to check out the websites yet, but plan to in the near future.  If the rain keeps up it will keep me indoors so I'll have more opportunity.  Oh, I react to mineral oil and glycerin so if you've spent any time reading labels for personal care products....yeah, at least one of those is in just about every one of them.

Anyhow, my internet is having fits so I'll close for now.

In order of importance (IMO).

We live in a highly toxic world.

We can't change the chemical makeup of the world at large, but we can change the way in which we react to it. The key? LOWER YOUR TOXIC LOAD!!!

As a former chronic MCS/EI sufferer, I highly recommend the book Detoxify or Die by Sherry A. Rodgers MD, ND. You can find that on Amazon. I still have a *few* chemical sensitivities to conquer, but by and large I've improved immeasurably. As my toxic load decreases, so do my medical issues - all of them - including MCS/EI.

With regard to insects that prefer to dine upon one person over another, here's a link to a pretty good article on the subject. http://time.com/3311624/why-mosquitoes-bite/

Shalom,


Jesse.

 

[ccbreder]

This whole thread was difficult for me to follow, reading comprehension, I'm sorry. I would just like to reinforce that diet is very important. I urge anyone with un solvable allergenic health problems to consult with a holistic MEDICAL provider.

 

[Ella1]

Finally spent the week in the van. Almost literally. At night of course, and 3 of the 6 days were spent driving from here to there. We missed one campground office that closed 15 min before we arrived, so drove about 4 hours to another. Which ended up a good thing: hot shower in the AM, and that much closer to our next stopping point.

Packing for two left little space inside the van. That wouldn't have been a problem because she used her tent to sleep. The bigger problem was getting to the campground after dark, then all the stuff is in the way and it's just too hard to set things for bed.
I don't think well when breathing is difficult. For several hours in the pine forest I was not aware of pine smell or wood smoke, though there were two fires in the next spot, so did not plug in the air cleaner or have my masks out. At 2AM I awoke with respiratory distress and no heat, so cold. Unable to plug the machine into the inverter, but did manage to use my battery operated nebulizer. It helped. We left the campground about 4 to get to a balloon ride for my daughter. It was later in town that the pine smell became noticeable again, and I managed to hook up the air cleaner. It did remove the pine odor pretty quickly, so I know it works. I might even actually try it again, closer to home instead of 5 hours away. I chose to leave there. I couldn't do the cold (no shore power) and risk pine smell again. I think I might stayed the second night if I could have had heat.

I'll use paper and plastic, as the washable plastic dishes we had were useless and got tossed. With just only me, I will take a lot fewer items, hopefully in one tub rather than 2 filled ones. Will also figure a better way to store needed O2 tanks. I did use close to two each night. I'll ask the O2 company about a crate and maybe store 4-8 tanks standing between the cot and the back door.

I'm not ready to do this more than a couple of days at a time on my own, but now feel more able to do it. Haven't done it yet, but will plan several 2-3 day outings over the next months.

 

[Ella1]

My tall O2 tanks are exchanged, and now I have a better, easier way to transport and to use them. I can carry 3 nights supply standing upright and not only out of the way, but at the rear so switching them for new will be easier.
Now to get the sliding door locking mechanism repaired. It won't open with key or moving the latch.

 

[anewbiewannabe]

Ella1, glad to hear from you. I was thinking about you wondering how your trip went the other day but my internet connection wasn't strong enough to let me send a message. Then you posted the next day. Sounds like you had an adventurous shake-down cruise and learned some things. It's good that you have an easier way to transport your tanks and plan to get out for some more adventures.

 

[anewbiewannabe]

We can't change the chemical makeup of the world at large, but we can change the way in which we react to it.  The key?  LOWER YOUR TOXIC LOAD!!!

As a former chronic MCS/EI sufferer, I highly recommend the book Detoxify or Die by Sherry A. Rodgers MD, ND.  You can find that on Amazon.  I still have a *few* chemical sensitivities to conquer,   but by and large I've improved immeasurably.  As my toxic load decreases, so do my medical issues - all of them - including MCS/EI.

I agree about toxic loads, though each body reacts differently or everyone would be sick from it and more would be done. I'm fortunate that I was on a medically supervised detox years ago, as well as making major life changes, or I'd hate to think how I'd be now. It does build up with the exposures, depending on one's overall health so avoiding exposure as much as possible is a good thing IMO. Unfortunately insurance didn't and doesn't cover the treatment so I would need the money for it. If I get out with enough I'll go back to the doctor I went to before for that and for overall health improvement to make my travels even better---it is quite expensive for one whose ends don't meet.

I don't think I'll ever consider myself a former sufferer since the way for me to keep the load down is to avoid it. Actually, I don't see it as being a sufferer---it is something I have a higher sensitivity to and I'm one of the "canaries in the coal mine" shining light on all the toxins in our environment that really don't need to be there. Of course, I prefer to not increase my challenges by getting sick.

I only go through severe respiratory distress about once a year now---this last time currently I don't have a clue if it was just a bug or what since I hadn't been out in the right time frame. I always remove myself from the area of airborne irritants as soon as I become aware and can get away so I may have a headache and/or other temporary symptoms rather than requiring an inhaler and a visit to the doctor. I pray I never have to go through a "challenge" in order to prove it when the day comes where I have to change doctors again. I like breathing enough air without pain and hope to do it for a long time before needing bigger measures to help me breathe.

 

[Ella1]

New york times article today, Nov. 29, 2015
Contaminating Our Bodies With Everyday Products
http://www.nytimes.com/2015/11/29/o...-region&WT.nav=opinion-c-col-left-region&_r=0

"IN recent weeks, two major medical organizations have issued independent warnings about toxic chemicals in products all around us. Unregulated substances, they say, are sometimes linked to breast and prostate cancer, genital deformities, obesity, diabetes and infertility...
"The gynecology federation’s focus is on endocrine disrupters, chemicals that imitate sex hormones and often confuse the body. Endocrine disrupters are found in pesticides, plastics, shampoos and cosmetics, cash register receipts, food can linings, flame retardants and countless other products..."
" “Emerging evidence ties endocrine-disrupting chemical exposure to two of the biggest public health threats facing society — diabetes and obesity,”...also ties endocrine disrupters to infertility, prostate cancer, undescended testicles, testicular cancer, breast cancer, uterine cancer, ovarian cancer and neurological issues. Sometimes these problems apparently arise in adults because of exposures decades earlier in fetal stages..."

Much more in the article. A few months ago there was a question about the safety of cooking food in the can it came in. Maybe this will help answer that question.

 

[planet-beaver]

"I have yet to find a MD that believes MCS exists"

Because it doesn't. We had a co-worker that was sensitive to everything. Our entire work place was turned into a nut house because of her. She was suing our company multiple times and finally they offered her load of cash to just go away and quit. It was freaking nuts. I could write pages and pages what we went through with her. 300 people work here and we all had to change everything from perfumes, detergents, hair spray, soap, special filters, towels and on and on and on. She was allergic to water if it wasn't distilled. Complete basket case.

Every week there was something that would set her off. The 200lbs extra pounds she had on her was never the reason she could not breathe.

 

[Optimistic Paranoid]

Just saw this in the New York Post:  Electromagnetic Hypersensitivity Syndrome (EHS).

http://nypost.com/2015/11/30/teen-who-was-allergic-to-wifi-commits-suicide-mom/

Regards
John

 

[Ella1]

"I have yet to find a MD that believes MCS exists"
Because it doesn't.

“It is difficult to get a man to understand something, when his salary depends on his not understanding it.”  Upton Sinclair

Few MDs have training in toxicology—poisons. Industrial and Environmental toxicologists were, and some other MDs have picked it up along the way. (Don't go to a heart doctor for a digestive tract problem, he probably knows little to nothing about it)
MOST MDs get support in their training through drug manufactureres, and there's no money in a cure.
Because of their training, they not only don't know what the toxins do, they believe what they've been trained to believe.

Six consensus criteria were identified by researchers for the diagnosis and definition of MCS in 1989 (later edited in 1999)
1. Symptoms are reproducible with repeated (chemical) exposures.
2. The condition has persisted for a significant period of time.
3. Low levels of exposure (lower than previously or commonly tolerated) result in manifestations of the syndrome (i.e. increased sensitivity).
4. The symptoms improve or resolve completely when the triggering chemicals are removed.
5. Responses often occur to multiple chemically unrelated substances.
6. Symptoms involve multiple-organ symptoms (runny nose, itchy eyes, headache, scratchy throat, ear ache, scalp pain, mental confusion or sleepiness, palpitations of the heart, upset stomach, nausea and/or diarrhea, abdominal cramping, aching joints).


Environmental medicine specialists claim MCS causes negative health effects in multiple organ systems, and respiratory distress, seizures, cognitive dysfunction, heart arrhythmia, nausea, headache, and fatigue can result from exposure to levels of common chemicals that are normally deemed as safe.

The first time I read this, more than 10 years ago, it was in a medical report. MCS has a BILLABLE medical code, so yes, it IS recognized by the RELIABLE MEDICAL COMMUNITY,  even though the doctors you go to don't.  I wonder, do you ask them? Social Security recognizes it, and Federal law (ADA) and the USDEPT of Labor requires accommodation for it. (and have, for over 15 years.) I wonder about your doctors...

We had a co-worker that was sensitive to everything. Our entire work place was turned into a nut house because of her.

Having gone through the same thing myself, I understand. From the "other" side.
Management climate plays a significant part in employee response. I would think that your entire workforce was being misinformed by someone(s). Some people, and if it was the ENTIRE work force as you say were possibly afraid they would have to quit using their fragranced personal care and laundry products products for work. That's too bad. And completely wrong. What were they afraid of? What were you, personally, afraid of?

She was suing our company multiple times and finally they offered her load of cash to just go away and quit.

It doesn't happen that way. Those suits would come under your state's Workers Compensation laws, as other employees are protected, too. Sounds like she won her suit(s). Depending on time in and other criteria, she may have been eligible for medical retirement at 2/3 pay, or if she lost, may have received a medical retirement package. You do know that most state WC laws greatly favor management, don't you?
And, she probably had to first ask for accommodations under the Americans with Disabilities Act, part of the Civil Rights Act/504. When/if denied those, she would have recourse to sue. The company is not just going to just give her a bunch of money to "go away". That's silly to even think that. Her medical problems and legal suits had merit, if she got a load of cash and/or medical retirement.

It was freaking nuts. I could write pages and pages what we went through with her. 300 people work here and we all had to change everything from perfumes, detergents, hair spray, soap, special filters, towels and on and on and on. She was allergic to water if it wasn't distilled. Complete basket case.

IF you are not overstating, apparently the management saw a lot of merit in her situation, and chose to make your workplace toxin free. There are several facilities in the US whose owners/management have done that. Since you found it so very objectionable, why did you not quit?

The ADA does require that the employer work with the employee to find a solution, to accommodate her medical needs. Google Americans with Disabilities Act.  Here's a few links: http://www.ada.gov/
http://www.dol.gov/dol/topic/disability/ada.htm  (see also employee rights and employers' responsibilities)  and the act itself, through http://www.ada.gov/pubs/ada.htm
The one you might find useful for purposes of this discussion might be :
  Current text of the Americans with Disabilities Act of 1990 incorporating the changes made by the ADA Amendments Act of 2008. (HTML) | (PDF)    http://www.ada.gov/pubs/adastatute08.htm

Every week there was something that would set her off. The 200lbs extra pounds she had on her was never the reason she could not breathe.  

Again, if you are not overstating, I would guess she had more than one undiagnosed medical problem. Reactions to toxic chemicals can be found on MSDS sheets of regulated products. However, most personal care products are not regulated, so the toxins in them do not have to be disclosed. (There IS some information available on those, though. google  commom chemicals found in personal care products. Then google the MSDS sheets for the toxins named. You need to be a detective, though.  )
I would hazard a guess she is/was also suffering from food allergies.
Reactions to chemicals are NOT just respiratory. They cover the entire body. Not every body reacts the same to the same toxins or groups of toxins. That is one reason why it's so difficult to diagnose.
another is “It is difficult to get a man to understand something, when his salary depends on his not understanding it.”  Upton Sinclair---there's no money in a cure. AND it could cost a "load" of cash to alter work environments for MCS, except that the ADA does not require that of the employer. Doesn't require the employer to require all employees to be toxin free. DOES require the employer to work with the employee to find a workable solution.