PROTOCOL CARE FOR PATIENTS WITH MULTIPLE CHEMICAL SENSITIVITIES OR CHEMICAL INJURY

PROPOSED DRAFT

PROTOCOL CARE FOR PATIENTS

WITH MULTIPLE CHEMICAL

SENSITIVITIES OR CHEMICAL

INJURY An "Undefined Illness"?

10/18/2014

PROTOCOL CARE FOR PATIENTS WITH MULTIPLE CHEMICAL SENSITIVITIES OR CHEMICAL INJURY

PROPOSED DRAFT FOR DISCUSSION PURPOSES

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A PERSON WITH MULTIPLE CHEMICAL SENSITIVITY (MSC) SHOULD READ THIS DRAFT PROTOCOL AND DISCUSS IT

THOROUGHLY WITH HIS/HER PHYSICIAN AND ATTENDING CAREGIVER(S) TO MAKE ANY NECESSARY MODIFICATIONS

OR THE LIKE. DRAFT PROTOCOL STARTS ON

PAGE SIX (6).

WHEN ENCOUNTERING A PERSON (prospective patient) with (MCS) or Chemical Injury or Chemical Intolerance, this is what you should know:

Overview | Multiple Chemical

Sensitivity (MCS) is the name given to

a syndrome in which a sufferer

experiences multiple symptoms upon

exposure to minute amounts of

everyday chemicals. There is currently

no officially recognized definition for

MCS. This is due to the fact that it is

becoming pervasive but the political

will to pin point the causes to petro-

based compounds used in many

common consumer products is

lacking. Thus, it is claimed that very

little is known about it, especially the

mechanisms involved with the onset

of symptoms.

To circumvent the "elephant in the

room," there are theories to suggest

a possible role for a hypersensitive

central nervous system, immune

dysfunction and impaired

detoxification by liver enzymes. Some

medical professionals, and even

organizations, continue to insist that

the syndrome is psychological in

origin, even in the face of a growing

amount of evidence from studies that

show clear abnormalities in people

with MCS on exposure to normally

safe levels of chemicals. Through

1999 there were a total of 618

scientific articles, editorials, books,

book chapters and reports relating to

MCS. Of these, 308 supported an

organic/physiological basis for

symptoms whereas only 137

supported a psychological

interpretation.

Although there is no definition

universally accepted by the

established medical institutions since

1999, MCS experts (Bartha et al 1999)

have come to a consensus on the

criteria for diagnosis, and thus far

these criteria remain unrefuted in the

published literature.



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These criteria are as follows:

The symptoms are reproducible

with [repeated chemical] exposure.

The condition is chronic.

Low levels of exposure [lower than

previously or commonly tolerated]

result in manifestations of the

syndrome.

The symptoms improve or resolve

when the triggers are removed.

Responses occur to multiple

chemically unrelated substances.

Symptoms involve multiple organ

systems.

MCS/Toxic Injury is NOT a result of

an allergen. It is a result of exposure

to a toxin/toxicant.

In brief, MCS is an acquired chronic

disorder characterized by recurrent

symptoms in response to exposure

to multiple, unrelated chemicals

("chemical cocktails") in the

environment. The symptoms

generally occur in one of four

categories: central nervous system,

circulatory, respiratory, and hepatic,

including liver and spleen.

Moreover, as of 2011, the prevalence

of MCS of the U.S. population was at

13 percent (approximately 40

million). This calls for informed

medical help for people with

chemical sensitivities. Missed

diagnosis of chemical sensitivities

may result in incorrect treatment

and possible iatrogenic

harm resulting from the activity of

physicians; said of any adverse cond

ition in apatient resulting from treat

ment by a physician or surgeon.

Symptoms | Many MCS sufferers can

trace the start of their illness to an

acute exposure to highly toxic

chemicals (Gulf War veterans, and

farmers using pesticides for example).

For other sufferers the illness

develops over a long period of time

most likely involving chronic low level

exposure to chemical substances.

Although MCS can occur on its own, a

large number of sufferers also suffer

from CFS, Fibromyalgia and other

related disorders. This obviously

points to the possibility that all these

illnesses are part of the same

underlying process and likely have

common causes.

MCS is a chronic condition with the

patient usually experiencing some

level of "unwellness" all the time.

However, patients have an acute

reaction when exposed to minute

amounts of the chemicals to which

they are sensitive. Often the level of a

chemical that triggers a reaction may

be so low that the sufferer cannot

even smell it.



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Common symptoms of MCS upon

exposure:

Fatigue

Headaches

Disorientation

Dizziness and faintness

Flu-like symptoms

Memory loss

Visual problems

Nausea

Irregular or rapid heartbeat

Muscle and/or joint pain

Gastrointestinal problems

Mood disturbances such as

depression/anxiety/irritability

Short-term altered mental status

Asthma/Breathing Problems

Rashes

Difficulty concentrating

Flushes

Most sufferers have a distinct reaction

upon every exposure. It is common to

first experience dizziness,

disorientation, rapid heartbeat and

mood changes followed by flu-like

illness and muscle/joint aches. In

severe cases, the flu-like illness and

aching can persist for days.

Triggers | Reactions in MCS are

triggered by a vast array of everyday

chemicals from perfume to diesel

exhaust. The common ingredients in

most of these chemical products are

hydrocarbon based volatile organic

chemicals (VOCs). Phenols (containing

benzene) are commonly implicated.

With everyday cosmetic and

household chemical products, it is

generally the addition of perfume that

makes them bad news for MCS

sufferers. Typically a sufferer will

notice a sensitivity to one or two

things to start with, perfume and

cigarette smoke for example, and then

will rapidly become sensitized to

more and more chemical sources over

a relatively short period of time. The

reasons for this common occurrence

are unknown but it is clearly

something that needs to be

investigated.

Common triggers in MCS are

pesticides (e.g., organophosphates

and organochloridesDDT,

chlordane, lindane, dieldrin)

fragrances (perfume) (benzaldehyde,

benzyl acetate, benzyl alcohol,

camphor, ethanol, ethylacetate,

limonene, linalool, a-pinene, g-

terpinene, a-terpineol,

dichlorobenzene); note that all of

these chemicals are known to have

negative health consequences, mainly

due to effects on the central nervous

system



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gasoline | vapors cause central

nervous system depression, including

eye and respiratory irritation,

dizziness, headache, drowsiness, and

incoordination

vehicle exhaust | major exhaust

fumes include carbon monoxide,

nitrogen dioxide, sulphur dioxide,

benzene, formaldehyde, polycylic

hydrocarbons, and suspended

particles (PM-10)

household cleaning products,

dishwasher detergent, including

laundry liquid/powder, fabric

softener, air fresheners, and

bathroom/kitchen detergents |

common chemicals include diethyl

phthalate, toluene, hexane/xylene

personal care products & cosmetics

including shower gels and liquid

soap, nail varnish, hair styling

products, hair conditioners, sun

lotions, scented soaps | some of the

common chemicals include cocoamide

DEA, sodium lauryl sulfate, acetone,

benzaldehyde.

Other triggers include cigarette

smoke, natural gas, new carpets made

with benzene derivatives,

formaldehyde and the like, particle

board, marker pens, soft plastics,

newspapers/magazine, paint, varnish,

solvents, glues/adhesive, food

additives and preservatives,

medications, unfiltered waterand

more.

This list is not all inclusive.

Impact on Quality of Life | As a

devastating illness, an MCS sufferer

typically becomes more and more

isolated and withdrawn as they simply

cant be around people (wearing

perfume, deodorant etc.) or in public

spaces where chemicals are routinely

used. MCS sufferers often lose their

jobs as they cannot tolerate the

chemicals in the work environment,

and relationships often break down as

the partner is unable to understand or

adapt to living without the use of

common chemical products. To add

insult to injury, because of the current

medical confusion over the illness,

patients often have to endure being

labelled as attention seekers or

hypochondriacs, as well as having to

fight, often in court, to be granted

disability benefits and appropriate

housing.

NOTE: If the primary doctor doubts

that Multiple Chemical Sensitivity is

NOT physiological and believes the

roots are psychological, that doctor

is not an appropriate health care

provider for the person with MCS.

Such a doctor can do more harm

than good and needs to do further



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research on recent findings that

point to physiological origins.



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DRAFT

PROTOCOL

o Reassure the patient that you

understand he/she is sensitive

to chemicals and will work with

him/her in providing care.

o Be sure to ask what exposure(s)

she/she recently encountered.

o Be sure to ask what the patient

is sensitive to, including his/her

history of reactions to various

drugs you may consider to

administer.

NOTE: Persons with MCS are

the experts related to their

own needs and requirements.

Therefore, it is important to

have the patient involved in

the development of their care

plan.

A comprehensive assessment is

required, and the medical

history may be extensive as MCS

affects many systems.

o Take into consideration the five

stages of grief or loss of good

health and determine which

stage the patient is in regarding

his/her condition

(1) denial and isolation

(2) anger

(3) bargaining

(4) depression

(5) acceptance

o Carefully note environmental

sensitivities, food and drug

allergies and their reactions.

Note how the patient copes with

his/her MCS as it varies

dependent on the actual

sensitivities specific to that

patient. Include what specific

equipment they use, their usual

medications or remedies,

alternative measures or oxygen.

o Determine if oxygen therapy is

required and prescribe it.

o Place a high-alert allergy band

on the patient and mark it

MULTIPLE CHEMICAL

SENSITIVITY (MCS).

o Educate the caregiver(s) to the

patient's condition of MCS.

o Discuss diet needs of patient

and indicate on diet order that

the diet is a special-needs diet

for MCS. Only pure food should

be served that do not contain

preservatives, dyes, colorings,

MSG, aspartame, or other GRAS

foods (e.g., margarine).

o Consult a dietician for dietary

needs; retain dietary

requirements in the patient's

medical record for future

reference.



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o Allow patient to supply his/her

own tolerated food products

and dietary supplements.

o Assign a private room with

negative pressure if available.

Do not use a room that has

been recently exposed to any

type of fragrance or VOCs.

Maintain patient isolation from

other patients and their visitors

at all times.

o A room without carpeting is

essential for the safety of the

patient.

o Change the linens on the bed

that are fragrant-free (e.g.,

without any Febreze fabric

softener). Not all so-called

scent-free products are toxin

free!

o Flag the patient's chart or other

written information that he/she

is chemically sensitive.

o Whenever possible, take the

patient's own medical supplies

and equipment with them,

including oxygen mask and

tubing, medications, food and

water, bedding, clothing, and

soap. He/she may be sensitive

to such items issued at a

shelter, hospital, or clinic.

o If drugs are administered

(1) administer low doses with

caution and keep them as

simple and as minimal as

possible;

(2) use IV fluid bottled in glass

without dextrose if possible

(many persons react to corn-

based dextrose);

(3) capsules are generally better

than tablets because they have

fewer binders, fillers, and dyes;

(4) if administering anesthesia,

use short-acting regional rather

than general anesthesia

whenever possible and avoid

the use of halogenated gas

anesthetics.

o Consult with the patient's

environmental physician or

acupuncturist if possible.

o If the patient is taken to an

emergency shelter or a hospital,

help protect him/her from air

pollution. Some suggestions

(1) avoid placing the patient in

rooms with recent pesticide

sprays, strong scented

disinfectants, cleaners, new

paint or carpet, other recent

remodeling, a recent patient

wearing any fragrance;

(2) place a sign on the door,

stating the patient inside has

MCS; and add ""Check at the

nurses' station before entering

the patient's room";

(3) assign caregivers* who are

not wearing fragrances (e.g.,



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perfume, fabric softener,

Febreze on clothes, and who do

not smoke);

(4) allow the patient to wear a

mask or respirator, nebulizer,

use oxygen mask, or an air

filter, or open a window as

needed;

(5) keep the door to the

patient's room closed

(6) reduce time the patient

spends in other parts of the

hospital, if possible, by

performing as many procedures

and evaluations as possible in

his/her room;

(7) transport patient with P95

mask or personal respirator.

* Caregivers: Staff caring for

patient is to refrain at all times

from wearing perfumes,

scented lotions, hair spray,

scented shampoo, deodorants,

or scented products and use

only unscented soap to wash

their hands. Staff should also

be aware that the laundry

soaps and fabric softeners

they use to wash their

uniforms will affect the patient

and should not use these

products when caring for any

patient with MCS! In fact, all

members of the medical team

should be fragrance-free,

especially in regards to

scented clothing, colognes, and

the like.

o Obtain Purple Nitrile Medical

Exam Powder Free Glove Kit and

place in room.

o Do not use any Sharpie writing

instruments or the like that

have a strong odor.

o Order a bottle of hydrogen

peroxide to use as skin prep for

IV initiations and phlebotomies.

o If patient requires oxygen, open

tubing, mask, or prongs

package, "air out the item(s)

before use with patient. Wipe

the mask/prongs, and tubing

with hydrogen peroxide and

flush the tubing with oxygen or

medical air prior to applying to

patient. These actions are

necessary to dissipate the scent

of the plastic.

o Keep the use of plastic to a

minimum. Use paper tape

instead of plastic tape.

o Allow the patient, or provide,

purified water for drinking.

o Do not allow open containers

with chemical to sit in the room.

o No plants, flowers, magazines,

newspapers are to be placed in

the patient's room as they emit

VOCs.



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o Whenever possible, ensure that

the air is fresh (not artificially

"fresh").

o Utilize charcoal and baking

soda to absorb and remove

odors from the room. Open

windows if possible.

o Communicate and cooperate

with the patient whenever

possible as the patient generally

knows what will help.

o Observe the patient for the

following symptoms

o fatigue

o memory loss

o depression

o nervousness

o lack of motivation

o visual problems

o hearing problems

o dizziness

o sleep disorders

o edema

o inflammation of head

tissue

o syncope

o spastic muscles (.2

mEq/kg of magnesium

over a 4-hour period daily

may relieve spasms)

o pulling parathesias

o hypoesthesia

o hyperventilation

o seizures

o asthma

o severe anaphylaxis

o disorientation

o confusion

o irritability

o hoarseness

o loss of coordination

o loss of logic sequencing

ability

o shortness of breath

o headache

o chest pain

o joint pain

o digestive difficulties

o tingling sensations in any

part of the body

o numbness of extremities

o digestive difficulties

o cold or heat sensitivity

o rashes

o nausea

o sinusitis

o rhinitis

o pallor

o anemia

o hives

o any other symptom

Report to physician any signs

and symptoms exhibited by

patient.

o In case of surgery, test Betadine,

tape, and suture material 48

hours prior to surgery to

observe any adverse reaction.

PRE-OP PROCEDURES

o Wash down operating room

with water and baking soda

solution to remove disinfectant

and pesticide odors.



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o Ensure that the patient has been

prepared for surgery by

lowering his/her total load of

chemical exposures and

increasing his/her intake of

antioxidants, vitamins, and

minerals. High levels of vitamin

C before and during surgery

(1 to 4 grams every four hours)

helps to tolerate chemical

overload.

PRE-OP MEDICATIONS

o No oral medication if possible.

Avoid antihistamines and

steroids if possible. Benadryl or

an injection of 0.4 to 0.6 ml of

IM atropine may be used to

prevent excess secretions. Also,

Atarax is usually safe. Usually,

atropine or morphine-demerol

compounds are sufficient for

pain control. To alkalinize

stomach contents to reduce

problems with aspiration

pneumonitis, use Akla Seltzer

(without aspirin).

For intravenous fluids, use IV

0.45 normal saline in glass

bottles, not plastic. Soft

plastics, such as those used for

IV drips and blood bags contain

phthalates, which include many

toxic chemicals such as

hormone disrupters. These

chemicals leach into the IV

solution and can cause

reactions in the patient with

MCS. Glass bottled 45 NS

available from Merit

Pharmaceuticals ((800) 696-

3748). If dextrose or Ringer's

solution is used, observe for a

reaction due to its corn content.

For fructose and invert sugars,

contact company beforehand to

check formulations and sources.

ANESTHESIA

o Do not test anesthetic drugs

before use.

o All drugs should be checked for

preservatives.

o Sodium penathol, Versad,

Phyentanyl (long-acting opiod)

are recommended drugs for

induction and maintenance of

anesthsesia.

o The basis for anesthesia to work

well

(1) the patients inhales 100%

oxygen for five minutes;

(2) Bolus of sodium pentothal or

other short-acting barbiturate is

used for induction;

(3) followed by curare (a long-

acting morphine compound)

and a long-acting scopolamine

compound. Succinyl choline

chloride (Anectine) may also be

used to paralyze. Sublimaze

and Innovar can be used to

obliterate memory.

o For shorter procedures, the

patient may use the Brevitol

drip.



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o Diprovan is recommended for

induction and/or regional

anesthesia.

o Use local anesthetics such as

preservative-free and

epinephrine-free xylocaine or

carbocaine whenever possible.

No halogenated hydrocarbons

(Fluothane, Ethrane, Penthrane).

The patient can get dramatically

worse with gas anesthetics. If

recovery occurs, it may involve

several days of recovery.

o Avoid inhaled anesthetic, if at

all possible, since the

fluorinated hydrocarbons and

nitrous oxide are known to be

immune-suppressants. If

required, nitrous oxide is to be

used only in as limited a level as

is possible.

SURGERY

o Do not use any dyes.

o Safe sutures are silk, cotton,

gut-lamb. Avoid synthetics.

o Recommended lab work for

surgeryCBC, urinalysis, SMA

20, liver function.

POST-SURGERY

o Antibiotics given intravenously

provoke fewer reactions than

orally administered antibiotics.

o In-line intravenous filters

should be used for higher

tolerances.

o Use TENS unit or acupuncture

for pain control. Vicodan may

be okay for pain.

FURTHER NOTES/MODIFICATIONS

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THE INFORMATION PROVIDED IS

NOT INTENDED TO BE A

SUBSTITUTE FOR A PHYSICIAN'S

CARE OR TREATMENT. CONSULT

WITH THE PHYSICIAN BEFORE

ACTING ON ANY OF THE

RECOMMENDATIONS. THIS DRAFT

PROTOCOL IS PROVIDED IN THE

ABSENCE OF A PROTOCOL THAT

SPECIFICALLY MEETS THE NEEDS OF

A PERSON WITH MULTIPLE

CHEMICAL SENSITIVITY.

IN FACT, THIS IS A CALL FOR AN

OFFICIAL PROTOCOL. THE CDC

NEEDS TO RECOGNIZE MCS AS A

SERIOUS PUBLIC HEALTH CONCERN.

According to a research study in 2011,

ninety physicians practicing in the

State of Virginia responded to a mail

survey regarding MCS, over half

believed chemical sensitivity to be a

combination of medical ("a chemical

exposure and genetics") and

psychological condition (resultant

response could be "depression,

generalized anxiety, posttraumatic

stress disorder, hopelessness"),

slightly skewed towards physiological

etiology. No physician endorsed a

purely psychological etiology.

The following statement should be

taken into consideration regarding a

June 2008 report published in "The

Journal of Environmental Health" on

"The Challenges of Multiple Chemical

Sensitivity" which noted the following:

Regardless of whether MCS is a

legitimate physiologic disease process

or not, giving it due consideration is a



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useful exercise for the public health

community. If proven scientifically

valid, MCS would significantly affect

public health in general and

environmental health specifically. MCS

could fundamentally alter our

understanding of pathophysiology,

affecting disease research design and

disease prevention measures. On a

much broader level, the government,

private sector, consumers, and general

population would be engaged in a

partnership that would benefit all of

public health. A nimble, adaptable

public health infrastructure benefits by

considering MCS and the state of

environmental health. It is an

important exercise to consider these

implications and the ability of public

health to respond. A public health

community that is unable or unwilling

at a minimum to contemplate

paradigm-altering possibilities neglects

its duty. With such significant

implications, neglect would be

insensitive.

Last but not least, every person with

MCS symptoms varies in severity as

well as symptoms due to a particular

chemical exposure. Some persons

have been suffering for a long time or

some are recently aware of certain

sources that are causing symptoms.

Find out if the person has had/has

extreme difficulties with any specific

chemical exposures. One person's

extreme may not be that of another's.

There cannot be any generalization of

MCS beyond the consensus criteria for

diagnosis. For an example, a person a

severe condition may not even be able

to tolerate an ink pen in her/his

surroundings. The symptoms may

vary according to the possible

multiple organs that may be afflicted.

It is vital to check a person's organ

health (e.g., heart, spleen, kidneys,

lungs, liver, skin).

Compiled from various online sources

(October 18, 2014)

PROTOCOL CARE FOR PATIENTS WITH MULTIPLE CHEMICAL SENSITIVITIES OR CHEMICAL INJURY

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Transcript of PROTOCOL CARE FOR PATIENTS WITH MULTIPLE CHEMICAL SENSITIVITIES OR CHEMICAL INJURY