M.E. & FM
Manual --Main Page
Updated 97/02
7. Treatment Possibilities:
1)** Talk with your doctor before
trying any new treatment; don't mask symptoms of
other potential problems. As a warning to others,
I have included (with bad grades) poor or harmful
treatments. I hope this will prevent desperate
people from trying useless and possibly dangerous
treatments. Some sections have very little
information, because I did not find any materials
regarding these treatments.
2)** Resources :
a)** Dr. Charles Lapp discusses a wide
range of therapies (#93052 Video4 @
2:07);
b)** Dr. Jay Goldstein (#92056 Video3
@7:33); and #93018-24.
c)** Immune system definition #94021-6.
3)** Symptom specific treatments.
(#93052 Video4 @2:38) Dr. Charles Lapp states
that even though a study may show a particular
therapy might not be good for the overall condition
of M.E., it may still be effective for treating a
specific symptom. Acyclavir was studied, proven
ineffective with M.E., but definitely helps treat the
B-simplex viruses like the cold-sores and shingles
that occur with M.E.
4)** Stigma. Many drugs have a stigma
attached and the general public has their own ideas
about them - ie anti-depressants. It may help if
you can find a better way to describe what
medications you are taking - eg rather than saying
"I'm taking an anti-depressant" you can say "I'm
taking a tricyclic analgesic" (this is what Elavil or
Amitriptyline is), or say just the name of the drug.
5)** Pharmaceutical Association of
Canada Newsletter. For a free newsletter and
information on drugs phone #1-800-363-0203.
6)** Study trial durations. (#92057
Video4 @1:17) Dr. Daniel Peterson states that it
is very important to have studies done over a
period of months, not weeks. Researchers
conducted a 12-week study on the effects of
Ampligen on M.E. patients. After only three
weeks time, patients receiving the placebo felt
almost as good as the those receiving Ampligen.
By the end of the study, the placebo group lost
their perceived benefits while the Ampligen group
continued to improve.
a)** {PO}{Some people get hold of the
occasional study that shows there was no
significant benefits from a particular
treatment. This is true - everyone does not
receive significant improvements from one
specific treatment. That's the nature of
both M.E. and F.M. Some then further
change this statement by dropping the
"significant" and only saying "these have
shown that there is no benefit from any
therapies" - meaning nothing will help.
Generally people do respond to a specific
grouping of therapies}.
7)** Lots of time for treatments to
be effective. Allow yourself 4-6 weeks before
you decide whether or not a treatment is working
for you. An anti-depressant in the low dosage
prescribed may take 4-6 weeks before you see any
of the good effects; however the side effects may
show up quite quickly. This holds true for non-
prescription items like Evening Primrose Oil or
Co-Enzyme Q10.
a) ** Some people are prescribed too high
a dosage of a drug, get immediate, severe
reactions and then stop taking the drug.
The strength you take, as an M.E. or F.M.
person, should be much lower than for a
normal person (see "Drugs" section
following). Start at even lower dosages
than these - if you still have strong side
effects talk to your doctor, reduce that by
1/4 or split the dosage during the day.
b)** Even though you may not see direct
results from some treatments (eg Effamol,
or vitamins) your body may need them and
may not be getting the needed quantity
from your diet. M.E. and F.M. patients
have shown to be deficient in areas such as
essential fatty acids, which are provided by
Evening Primrose Oil.
8)** Sublingual (under the tongue)
medications are usually better metabolized by
your body - eg Co-Enzyme Q10 is four times
better metabolized sublingually. Look for the drug
identification number (DIN) on products sold in
Canada to ensure that it has been approved for use
as a sublingual. Sucking on a regular pill does not
provide the same benefit - sublingual tablets are
usually ground finer for easier absorption.
9)** Keep trying. Warning: never mix
therapies without consulting your doctor first.
a)Don't stop trying different therapies. Try
at least 2 or 3 on an on-going basis,
starting with the grade A treatments listed
in this chapter. You will probably find one
therapy that helps to a degree. Generally,
none of these will improve your overall
M.E. or F.M. symptoms more than 40%.
b)It may be better to try 3 or 4 at the same
time in your effort to alleviate some of
your symptoms. You may then feel better,
go back and find out which one worked, as
opposed to waiting at each step until you
find a treatment that helps.
c){PO}{It is better to be daily consistent on
your intake of medications, as opposed to
taking a drug every other day on a
continuous basis}
10)** Drugs will be listed as in the
following example:
**; Rivotril; (Clonazepam) (Grade C-);
(.5mg/day); ($10 = 100 x .5mg);
(ND 1-5 mg); #92031-5.
a)** or * or no asterisk will denote which
issue of the manual this information was
added or changed.
b)** Common name - "Trade name", the
name commonly used for the drug
c)** Brand name, if available
d)** Generic name in brackets
e)** Grade - what the experts feel of its
effectiveness - not my opinion
f)** Dosage - the suggested dosage for
M.E. or F.M. patients per day.
g)** The price for 100 tablets of the
smallest size in mgs. available. (prices
were obtained through London Drugs
Pharmacy 95/11).
h)** Normal dosage - (ND 1-5 mg) what a
"non-M.E. or F.M." person would
normally be prescribed. These dosages are
taken directly from the following books:
"The Essential Guide to Prescription
Drugs" (1995) and "The Canadian Medical
Association Guide to Prescription and Over
The Counter Drugs".
i)** Drug classification
j)** Reference numbers
k)** Doctors
11)** I grade these treatments
according to how specialists recommend them for
M.E. or F.M. Included are some controversial
treatments, as some patients do get relief by using
them. I do not recommend that you follow any
treatment unless it is discussed with your doctor
first. Grades are determined by the amount of
favourable studies, talks by doctors, and
discussions with other patients which have
occurred for each treatment.
a)** Grade A - Many specialists have
found this treatment to be very effective.
b)** Grade B - A number of specialists
have found this to be quite effect, and
patients have applied the same. Some
studies have shown merit in this treatment.
c)** Grade C - Of average use. Some
specialists find this helpful, and a number
of patients have mentioned success.
d)** Grade D - Few specialist have
reported this effective, possibly because
they have not tried it. Some patients have
received varying results.
e)** Grade E - A few patients have
mentioned marginal success, or very little
has been talked about this treatment.
f)** Grade F - Both specialists and
patients have found this treatment to be
totally ineffective, and sometimes
dangerous.
g)** I have tried to avoid giving my
personal opinion on these treatments,
unless so noted as {PO}. My suggestion is
to try the treatments that have a high grade
for helping with some M.E. & F.M.
symptoms, before moving on to lower
grade items with less effectiveness. Just
because a treatment has a letter grade "D"
for example, does not mean this treatment
is not effective - it only means that I have
not heard much favourable discussion by
either doctors or patients. An example of
this would be Naphazoline, an eye drop,
which is recommended by one of the top 10
M.E. & F.M. researchers in the world -
Dr. Jay Goldstein. However, I have heard
no discussion by anyone else on this
treatment. It may be something that is
quite effective; over time, I may hear some
good results, and its grade will be
increased.
12) Ask your pharmacist for a
photocopy of the drug description from the
Pharmaceutical Dictionary for all drugs you are
taking. This book explains the possible side
effects you should be aware of, as well as any
other information you may need to know regarding
the drug's use or dosage.
a)** Get help from your pharmacist -
discuss drug dosages, best times to take
them, what side effects to expect, get
photocopies of information on the
medications you are taking, and phone him
to have the prescription filled before you
arrive, to avoid using up your energy by
having to wait for the prescription. Write
your questions down - if there is a line-up
when you get there, ask the pharmacist if
you can leave the list of questions with
him/her and then phone back for the
answers.
13)** When you take medications, if
possible, and only after consulting your doctor,
take them with food or a meal. This makes it
easier for your body to handle a strong
medication, and also helps to keep the drug
working in your system for a longer period of
time. In the evening, take your medication with a
glass of warm milk. Try taking divided dosages of
medication throughout the day to avoid over-
medicating.
14)** Who can make recommenda-tions.
Some people feel that doctors are the only
persons qualified to give recommendations on
treatments. {PO}{I believe this statement to be
true, and in a perfect world, this would be done.
However, through support groups, seminars, and
in conversations with support group leaders, many
patients agree that most doctors and specialists are
unwilling to investigate new treatments. The
realistic approach is to educate yourself, go to
your GP with highlighted materials, and suggest
that since this is such a low dose, has been used so
long, and is recommended by a number of
specialists, you would like to try it. You are not
"holding a gun to his head" - if he does not want
to, he can decline. You are explaining the "facts"
to him}.
a)** Quack Medicine Today - Sometimes
Specialists Recommend Tomorrow.
Sometimes it seems the medical community
is the last to pick up on new treatments.
For example, a friend (after suffering a
heart attack) was told by his specialist to
make sure to take garlic pills, because they
would help lower his blood pressure, and
his heart problem. A daily dose of Aspirin
is now recommended by almost every
specialist for the same problem. This
practice used to be called "quackery". A
cardiac specialist informed the same patient
that stopping the daily dose of Aspirin for 4
days may have contributed to his second
heart attack.)
15)** Drug & Health Food Store
Purchasing. You could spend a lot of money
needlessly buying overpriced drugs and vitamins.
Phone around to various vitamin centres and ask
have them send you their catalogue. At the end of
this subsection, I have provided a chart for your
use as you get information on actual prices. There
are various places to get discount vitamins and
health foods:
a)** CFIDS Health Buyers Club
1187 Coast Village Road, #1-280
Santa Barbara, California
USA
93108
(phone) #1-800-366-6056
Prices at the CFIDS Buyer's Club are
generally lower than almost anywhere else,
plus all of the profits made from your
purchase goes to research for your illness.
If you are going to buy the products and
vitamins anyway, why not have the profits
go to your cure?
b)Nutra-Chem
Ontario
Phone #1-800-465-2965.
Nutri-Chem has cheaper discount vitamins.
If you order through this company you do
not have to pay provincial sales tax. They
will courier the products to you at no cost
if your total purchase is over $100. They
will also send you a price list. The price
for Effamol, 180 capsules, is $32 plus
GST; the cheapest I have found in B.C. is
$39 plus PST and GST.
c)** Ecofresh Shoppers Inc.
121 Lakeshore Rd. West
Oakville, Ont.
L6K 1E2
#(905) 849-1674
This non-profit organization will send a
catalogue. They sell Genestra Brands at
cost, which are normally only available
through your naturopath. Support Group
Leaders call collect to Paul Beaty at the
above phone number.
Effamol 180 tablets @ $25-28.
d)**Supplements Plus
317 Adelaide Street, W.
Suite 503
Toronto, Ontario
M5V 1P9
#(416) 977-3088/ fax #(416) 977-3099
#1-800-387-4761
e)** "To Your Health"
Fountainhills, Arizona
#1-800-801-1406.
f)** Generally, the price of prescription
drugs is the same at any pharmacy. Get the
generic brand, if possible, but confirm that
the ingredient is the same. Why pay for all
the advertising? The dispensing fee for
prescriptions varies from $2.50 to $7.00,
depending on the pharmacy. Phone around
to get the best fee. Remember, you want
information as well - don't go to the
cheapest pharmacist if he is not willing to
help you with questions.
g)** Extended Health Coverage (eg
CU&C)
(1)**Plan your use. Be aware of
the limits and coverages for both
Pharma-care and any private health
care plans like CU&C. Use your
Extended Care coverage for
prescriptions that will not be
covered by Pharmacare (eg Imitrex
injections for migraines are not
covered by Pharmacare, but are by
CU&C).
(2)** Use up all your allotted funds
before they run out at year-end.
CU&C (#879-5711) takes calls and
will tell you how much of your
prescription limit you have left for a
specific length of time. If you are
expecting a heavier prescription
demand the following year, try to
have your doctor prescribe items
this year.
h)** Pill splitter & crusher. Since many
M.E. & F.M. patients require very low
dosages of medications, a pill splitter is
available (for $10) at most pharmacies to
help divide the smaller or harder pills.
i)** Liquid form. Consult your doctor
first. Many of these medications, either
prescription, herbal, or vitamin
preparations, can be obtained in liquid
form, to help reduce the dosages without
having to cut small pills. Sometimes taking
it sublingually, under the tongue, may
work better.
j)** Prescription life. The prescription
written on the pad by the doctor is valid for
one year. You then have one more year to
purchase a refill. If your doctor gives you
a prescription for several drugs, you do not
have to get each one filled at the same
time; you can have the pharmacy "hold"
the prescription until your finances are
better, or until you need the drug.
k) ** Drug prescription repeats. Save $10
- $15 on your purchase by getting your
doctor to write the prescription for the full
number of pills, as opposed to 3 repeats of
smaller amount of pills (eg instead of 3
repeats of 40 tablets, get 1 prescription for
120 tablets); you will then save the
dispensing fee for the 2 repeats.
l)** Drugs free for low-income. Many
drug companies, especially in the U.S.,
provide drugs free. A large list of these
companies can be found in #93018-42.
m)** If you may need emergency narcotics
(Demerol, Morphine) on a temporary basis,
get a note from your doctor and keep it in
your wallet, for presentation at the
emergency ward. You may be able to
register the treatment with the hospital
before-hand. Normally, if you go to
Emergency, the doctor on-call will not give
you narcotics. You must prearrange it so
they know you are not a drug addict, or
suffering from an ailment that could be
fatal if you were given narcotics.
16) ** I suggest you budget the
amount you intend to spend on treatments. Many
people spend vast amounts of money to buy their
way out of this illness, but from my research it
seems that most people have wasted a lot of
money. Determine a set amount that you want to
spend per month on treatments and then determine
the most effective way to spend that money. Many
people will try to promote their products (eg
Shaklee, Amway, Maatol). These products rarely
help, but the expense can be quite high. If you are
approached by someone who tells you that you
don't really want to get well because you are not
buying the product, my suggestion is to say
something like "I will take your products free for
two months, and if it works I'll pay for it" Most
people who seem to have great belief in their
products rarely seem to go for this, even though
they seem to have the "cure" for you. Some
companies have a "no questions asked" money
back guarantee. If you trust the person, try the
product out.
17)** Vitamin Pricing Chart. The
following chart is the one that I use to determine
actual price per milligram for vitamins. As the
quantity of pills, content, currency exchange,
delivery, PST, GST and the milligrams per pill
vary, I found it difficult to compare actual cost.
The chart works as follows:
a)** There are five columns for you to use
in pricing vitamins.
b)** The comparison figures are actual
prices from the CFIDS Buyers Club,
Nutri-Chem Pharmaceuticals in Ontario,
and my local vitamin store.
c)** The products used in the comparison
are: Co-Enzyme Q10 in sublingual form,
then in pill form, followed by the generic
Evening Primrose oil and Effamol.
d)** Prices drop with the quantity you
purchase.
e)** Exchange on U.S. dollars is based on
using a credit card - the rate is close to a
what the banks charge.
f)** GST and PST are not always charged.
g)** Duty for U.S. purchases is supposed
to be (1995) 2.8% for Vitamins, and 5.1%
for herbal preparations. You may find a
small variation depending on the customs
agent.
h)** Phoning, handling, mail, and courier
costs are a portion of the total cost, since
you will probably order more then one
item. A handling fee of $5 was only
charged for U.S. orders collected by the
mailman. A $5 fee for mailing was
charged for U.S. orders charged on Visa
by the CFIDS Buyers Club.
i)** You may have a phone cost, however
most companies do have 1-800 phone
numbers.
j)** Handling is charged by the Post
Office.
k)** Courier costs are usually absorbed by
the company if you purchase more than
$100.
l)** "Total Cost" is derived by adding up
all the above calculations.
m)** "Extra Content" is for entering
ingredients that may be in other brands, eg
with Magnesium you might get Calcium.
n)** "cents/mg" is the cents per milligram
- the best way to compare actual cost.
o)** Below the chart is the formula used to
arrive at this figure. Start with the store
price, multiply by the exchange rate of
1.43 to get "p" (the price); then add GST
and PST (if applicable); multiply the total
by the duty, and place this in the
"Cost" row. Add the phone call,
handling, mail, and courier costs.
Using this figure, divide it by the
number of tablets, and divide the
result by the number of milligrams.
If you wish to know the cost per
100 tablets, multiply that figure by
100.
p)** The chart works well if you can put it
on a computer spreadsheet, then enter the
numbers as you get them over the phone.
!!!! This chart is on the hard copy and is too large
to put on this site.
FORMULA: (Price) x (Exchange) = P
GST PST Duty
{ ( P + (P x .07) + (P x .07) x 2.8 ) + Phone + Handling + Mail
+Courier
{______________________________________________________________________
cents/mg = { number of pills
{______________________________________________________________________
{ number of mgs
18)** A cure for M.E. or F.M. has
not been discovered, but various treatments
do seem to ease some of the symptoms. Patients
react differently to these drugs (eg some sleeping
pills will make one person "wired" while they will
work well for someone else.) Trial and error for
several weeks is the only way to see whether or
not a drug or recommended treatment will work.
It is important when testing out medications to
realize that symptoms may go up and down in a
"wave motion" for your symptoms (eg you may be
getting less sleep but you have more energy.)
Take this into account when trying new drugs, as
the medication might be working for you even
though you are in a downward swing. Be careful
about deciding whether or not a drug is helping
you. Most drugs and treatments take a month or
two before you have any positive effects. Some
people find that a drug will make symptoms
worse, or makes them feel very groggy (eg Elavil
or another anti-depressant). {PO}{ From what I
have observed, this seems to happen when you are
prescribed too high a dosage. M.E. & F.M.
patients need only low dosages of a prescription as
compared to non-M.E. or F.M. people}
19)** "Bubble Cure" There seems to
be a 3-6 week "bubble cure" that is common for
M.E. & F.M. Patients try a new treatment and it
seems to dramatically improve their condition for
3-6 weeks. Then, even though they continue with
the treatment, their condition returns to the way it
was before they started. I have read about this
problem, and have also seen this occur in many
people.
20) ** M.E. requires higher levels
than normal. Dr. Charles Lapp (#93052
Video4 @ 2:22) believes that even though tests
show you have normal levels of certain vitamins
and minerals (eg B-12), an M.E. patient requires
higher levels than a healthy person before it can be
used in the cells.
21)** Specific symptom treatments.
In the next chapter, I have listed the most
recommended treatments for specific symptoms.
22)** Prescription Therapies.
Following is a list of prescription medications that
may reduce some of the symptoms of M.E. and/or
F.M.: #91015
a)** Acyclovir (Zovirax) (Grade E) (ND
600 - 1000 mg) ($108. = 100 x 200 mg)
(#93052 Video4 @ 2:38) A study proved
that this drug worsened the overall M.E.
condition.
b)** Adalat (Nifedipine) (ND 30 -
120mg) ($25. = 100 x 10 mg) (Grade C)
#950101-12 is a calcium blocker, and
seems to help with headaches.
c)** Ativan (Lorazepam) (Grade C) (1
mg/day) ($10. = 100 x .5 mg) (ND 2 - 6
mg) (#91022 Video1 @ 2:44) is an anti-
anxiety drug, and may be addictive. It is
also available in liquid form.
d)** Adamantan compounds (Grade D):
(1)** Amantadine (Symmetrel)
($114. = 100 x 100 mg) (ND
100-200 mg) is an anti-Parkinson,
antiviral drug, used for the
treatment of pain and fatigue. It is
also available in liquid form.
(2)** Kemantan, claimed to be
successful in Moscow, not available
at present.
e)** Ampligen (Grade B) (#91022 Video1
@ 01:14); #92033-22; #93025-4) a drug
tested in the U.S. that seems to have good
results for people with M.E. At present it
is only in the testing stages in the U.S.
Cost is $13,000 - $20,000 per year for the
patient. As of August, 1995 HEM
Pharmaceuticals (manufacturers of
Ampligen) is in a financial restructuring. I
understand Ampligen has received orphan
drug status by the US government, and two
small studies are underway. Not much has
been reported about Ampligen in 1995.
People using Ampligen must continue
taking it in order to keep getting benefits -
it is not a cure. {PO}{The price is so
astronomical that governments will be
unable to pay for patients to take this drug;
however successful trials of drugs that
make significant improvements may lead to
more doctors believing in M.E. as a
legitimate illness, more research, and
cheaper therapies.}
f)** Antibiotics (Grade D) don't work on
viruses - and M.E. is strongly believed to
be a virus. By taking an antibiotic when
you don't need it, your body will build up
an immunity to it over time, so that when
you do have an infection (eg strep throat),
the antibiotic may not help. #93018 Dr.
Dana Wiseman believes that medium-term
strong antibiotics may be helpful
and that some people actually have
Lyme disease. Their adverse
reaction to the antibiotics really
means the drugs are working against
the Lyme disease.
g)** Anti-depressants. (941004-9) There
are two groups of anti-depressants:
(1) Sedative (eg Elavil
(Amitriptyline), Pamelor
(Nortriptyline), Tofrinel, &
Sinequan (Doxepin)
(2) Energizing (eg Prozac
(Fluoxetine), Paxil (Paroxetine),
and Zoloft (Sertraline). This
category is considered as selective
serotonin re-uptake inhibitors
(SSRI).
(3)** Tricyclic anti-depressants
(TCAs) (such as Sinequan, Elavil,
Flexoril, and Pamelor) #93047-12
(Grade B) Anti-depressants in too
low dosages to be effective as
"depression relievers" do, however,
help with some of the M.E. & F.M.
symptoms. These medications
affect body chemistry, and can help
with falling and staying asleep.
Some people claim that
anti-depressants are a cure for
M.E. & F.M. One of the major
problems with both M.E. & F.M. is
sleep disturbances - these drugs can
help with the disturbances, which
may give the impression of a cure.
h)** Anti-histamines H-1 and H-2.
(Grade C) Histamine receptor #1
antagonist H-1, cold remedy type;
Histamine receptor #2, antagonists H-2.
These drugs are usually prescribed as ulcer
medications (such as Tagament and
Zantac); block histamines that are released
in your stomach. They might help for
sleep disorders and immune system
dysfunction.
i)** Anti-inflammatories (Grade C)
(#92055 Video2 @ 1:30) These drugs do
not seem to be very effective for
Fibromyalgia symptoms. They have two
main purposes - pain relief and reduction
of inflammation. Since F.M. is not an
inflammation, the pain component is the
only factor that may help, and other drugs
that work specifically on pain might be a
better choice.
(1)** Non-steroidal anti-
inflammatories (NSAID) such as
Ibuprofen ($10. = 100 x 200 mg)
and Naproxen ($16. = 100 x 250
mg) help for headaches, muscle and
joint pain.
j)** B-12
(1)** Injections. (Grade C) ($10/
month) Some patients find that this
vitamin injection therapy helps.
Subcutaneous dosage is 3 - 5 mgs.
twice weekly. Drs. Lapp and
Cheney (#93018-19) recommend the
use of Cyanocobalamin, 2000 -
2500 mcg per injection. 10 ml vials
at $9. each, subcutaneously or intra-
muscularly every two to three days.
(2)** You need higher levels of
B-12 in the pill form in order to
have the vitamin metabolized into
the blood stream. Drs. Cheney and
Lapp believe that normal dosages
don't get past the wall created by
M.E. The B-12 pill is the least
effective of the two, but is the
cheapest.
k)** Calcium channel blockers,
especially Nimodipine. #93018-25
l)** Cortisone (Grade D). Cortisone
injections are used for inflammation. Since
F.M. has no inflammation, most people
find these injections make them feel worse.
m)** Diamox (Grade D) you might build a
tolerance to it. (#93052 Video4 @ 0:51).
n)** Elavil (Amitriptyline) (Grade B)
(divided dosages from 10-40 mg/day)
($6. = 100 x 10 mg) (ND 25 - 300 mg) is
effective in relieving headaches, muscle
pain and fatigue. It is classified as a
tricyclic antidepressant, but is
non-addictive; however, you could build a
tolerance to it. {PO}{(Grade A). I have
suffered with continuous dull headaches
due to M.E. for many years, and this was
the only drug (10 mg/day) that has reduced
these.} Elavil is available in liquid form.
o)** Elkarneszine (Grade D) ( #92055
Video#2 @ 6:13) (Drs. Cheney & Lapp)
p)** Felbamate (Felbatol) (Grade D) (400
mg TID) (400 mg tablets) (ND 1,200 -
3,600 mgs) Classified as an
anti-convulsant.
q)** Flexoril (Cyclobenzaprine) (Grade
B) (5-10 mg at bedtime to 10 mg three
times a day) (ND 20 - 40 mgs) is classified
as a muscle relaxant, and is not intended
for prolonged use.
r)** Gamma Globulin (Grade C-) (5 cc
intra-muscular injection bid) #92033-22;
#940804- 3; #93044; #93001-625; #89013
(1)** Immunoglobulin or Gamma
Globulin injections (Grade C). Both
of these have the same ingredients,
they are just different brand names
from different manufacturers.
Pharmacare and CU & C will not
pay for the cost of these injections.
(2)** Intravenous Gamma Globulin
$300-$500 per 5 gm solution.
s)** H2 Blockers. (Grade D) (#92056
Video3 @7:33). (J. Goldstein) #93018.
Zantac (150 mg twice daily).
t)** Hydralazine (Apresoline CIBA)
(Grade D) (10-25 mg po) ($15. = 100 x 10
mg) (ND 40 - 200 mgs) #93024; #94011.
This anti-hypertensive exerts its action by
reducing vascular resistance through direct
relaxation of vascular smooth muscle. It
takes effect in 20-30 minutes.
u)** Hydrodiuril (Hydrochlorothiazide)
(Grade D) (25 mg QD) ($6. = 100 x 25
mg) (ND 50 - 200 mg) is an anti-
hyper-tensive thiazide diuretic. It is available in
liquid form.
v)** Imitrex (Sumatriptan) (Grade B) is a
serotonin 1 receptor agonist
vasoconstrictor, which shrinks blood
vessels in the brain. #92001. Imitrex is
successful in alleviating migraine
symptoms, with 80% of persons suffering
from a migraine getting relief. The drug
comes in the form of a pill or a self-
injected shot. The cost of the pill is
covered under Pharmacare, and costs $93
for six pills, while the cost of the shot is
not covered and costs $76 for two shots
(which includes an injector and a video
tape). Most hospitals no longer give
Demerol or Morphine for migraines, they
now give injections of Imitrex. If you get a
migraine, one way to get a free sample is to
go into the hospital for an injection.
{PO}{The injections are covered by some
Extended Medical Plans (eg CU& C) and
are probably the best since they work the
fastest. (Grade A). The injections have
stopped and seemed to prevent my
migraines for three months, while the pills
did nothing.}
w)** Kutapressin #94021-5 (Grade C)
(60 - 80 doses) (10 doses for $90.) Dr.
Charles Lapp. This is an extract of pork
liver. As of 94/04 it is not available in
Canada #94012-2. It can be obtained from
the "Emergency Drug Release Program of
the Bureau of Human Prescription Drugs",
Ontario, phone (#613) 941-2108. (#92057
Video4 @1:05). This is a polypeptide. 30
- 60 dosages before improvement can be
expected. (#93052 Video4 @2:42). Dr.
Charles Lapp. Several studies have been
done, with positive findings - M.E. patients
showing marked improvements.
x)** Mexiletine (Mexitil) (Grade D) (100
mgm bid) ($56. = 100 x 100 mg) (ND 300
- 1,200 mgs) #94011, an anti-arrhythmic,
will take effect in 30-45 minutes and last up
to 6-8 hours. Mexiletine is useful for
neuropathic pain.
y)** Naphazoline HCI (Albalon, Privine,
Vasocon, Clear Eyes) (Grade D) 0.1%
OU ($12/bottle) is a sympathomimetic
decongestant. #93024; #94011. These
eye drops stimulate the adrenergic
receptors and help cognitive function. The
drops take effect in 30 seconds to 10
minutes, and last 3 - 6 hours. No
prescription is necessary.
z)** Narcotics. #94024-4 Dr. Neil
Ellison, M.D., an oncologist in Danville,
USA states "Addiction occurs in only 1 out
of every 10,000 patients. This concern is
not a good enough reason not to treat the
other 9,999 patients". Most people find
that heavy pain medication does not work
for their day to day pain. However, for the
extreme days of pain, the occasional use is
somewhat effective.
aa)** Neuropeptide #941106;
#941102-10
bb)** Nimodipine (Nimotop) (Grade D)
(30 mgm po) (30-60 mg three times a day)
($658 = 100 tablets) #93024; #93018-25;
#94011. This drug is a calcium channel
blocker. It is used as an anti-stroke
medication and has a marked effect on
increasing central circulation. Nimodipine
takes effect within 20-30 minutes, and lasts
from 4 - 8 hours.
(1)** Dihydropyridines have the
best effect. Certain patients may
have improved cognition and
increased energy with
Nimodipine. Tolerance may
develop #93018-25
cc)** Nitroglycerin sublingual tablets
(Nitrol, Nitrodur, Nitrolingual,
Transderm-nitro) (Nitric oxide) (Grade
C+) (.040 mg - 1/8 of a tablet) ($8. =
100 x .3 mg) (ND .3 - 10 mg) #92033;
#94011 is an over-the-counter, non-
prescription drug, sold in .3 mgs size.
.040 mg may be enough to relieve muscle
pain and improve blood flow to arms and
legs for up to 8 hours at a time. Once the
bottle has been opened, the nitro-glycerin
looses its potency. After 6 months, the
tablets should be discarded. This product is
also available in a spray or as a patch.
{PO}{(Grade A). I use Nitroglycerin
tablets as a preventative for muscle pain
when I know that I will be doing a fair
amount of walking. I also use it to relieve
general muscle pain. Nitroglycerin is the
only drug that I am aware of that makes an
"immediate, temporary" improvement in
Fibromyalgia muscle pain.} Nitroglycerine
converts to nitric oxide, a brain receptor
and anti-spasmodic, and relieves
Fibromyalgia pain, but does not improve
cognitive function. It will take effect
within 3 minutes, and is most beneficial to
patients with Fibromyalgia symptoms.
#94021-4; #93008-5; #93024; #93018-25.
dd)** Oxycodyn - combined in Percocet
and Percodan (Grade D) (5 - 10 mgs)
($18. = 100 x Oxycodyn tablets; $16. =
100 x Percocet tablets) (ND 5 - 10 mgs)
#94024-7 is a narcotic analgesic. A study
was done to see whether this drug eased the
F.M. condition of periodic leg movements
(TLMS) during sleep, and was found to be
quite effective. Pain interferes with the
brain's ability to remain in a deep restful
sleep, which is why pain medications may
help improve your sleep.
ee)** Oxygen - bottled. (Grade F). You
should never try something like this
without first consulting your doctor.
{PO}{I have thought of trying this, but
have not yet found a local non-prescription
location. You can, with a prescription, use
bottled oxygen when you are having severe
problems with muscle pain or brain
fogginess. Some welding shops have
bottled oxygen with masks available to rent
for a monthly fee with no prescription
required. Some specialists believe it is a
lack of oxygen to your muscles and brain
that causes some of the M.E. & F.M.
symptoms. WARNING: I have read
nothing about this treatment so far. I
would think possibly using it for 15
minutes maximum once or twice a day may
help. One person mentioned that they
believed that pure oxygen given to
new-born babies was discontinued due to
possible brain damage}.
ff)** Parlodel (Bromocreptine) (Grade E)
($72. = 100 x 2.5 mg) (ND 10 - 40 mgs)
is a Dopamine agonist, used to treat
Parkinson's patients. A few M.E. people
have received good results with it.
gg)** Paxil (Paroxetine) (Grade D) (10-20
mg QAM) ($185. = 100 x 20 mg) #94011.
This drug will take effect in 1 hour - 6
weeks, with a duration of effect of up to
1-2 days.
hh)** Proparacaine HCI (Ophthaine,
Squibb). (Grade D) 0.5% OU (#93024) is
useful for central pain. This local
anesthetic is useful in DFS, Fibromyalgia,
and Irritable Bowel Syndrome, and takes
effect within 3 - 5 minutes.
ii)** Prozac (Fluoxetine) (Grade C+) (2
mg/day increasing to 10 mg./day) ($176.
= 100 x 10 mg) (ND 20 - 80 mgs) is a
non-addictive anti-depressant. #92033-22;
#940804-3. If you discontinue using this
drug, you must taper off the usage, rather
that stopping abruptly. #93044 For F.M.
patients it may be best to take this drug in
the morning, as it may create sleep
disturbance. Prozac seems to have
some immunological effects and
does not work at this low dosage as
an anti-depressant. #94021-4.
Available in liquid form.
(1)** Dr. Charles Lapp feels this is
an immune modulator.
jj)** Pyridostigmine (Mestinon) (Grade
D) (30-60 mg po) ($22. = 100 x 60 mg)
(ND 60 - 1,500 mgs) #94011, is used to
treat Myasthenia Gravis. It is available in
liquid form, and will take effect within 30
minutes, lasting 6 - 8 hours. Pyridostig-
mine may help muscle weakness, as well as
mental fogginess, increase energy and
reduce pain.
kk)** Risperidone (Risperdal) (Grade D)
(0.25 - 1 mg BID) ($114. = 100 x 1 mg)
(ND 2 - 6 mgs) is marketed as an
anti-psychotic.
ll)** Rivotril (Clonazepan), (Klonopin)
(Grade C) (1 mg./day) ($14. = 100 x .5
mg) (ND 1.5 - 20 mgs) #89001 is a
Benzodiazepine anticonvulsant. It is a
muscle-relaxant as well as an anti-seizure
drug. You can build a tolerance to this
drug. Rivotril taken at bedtime seems to
help with night sweats, sleep, and Restless
Leg Syndrome. At medium dosage, this is
slightly addictive - medium dosages over
several years is not recommended.
{PO}{(Grade B+) I have found this, at a
dosage of .5 mg two hours before bedtime,
to be very effective in putting and keeping
me to sleep, but not in improving the
restorativeness of my sleep}.
(1)** Rivotril (Klonopin) with
Sinequan (Grade D) (5 - 10
mgs/day of Sinequan) (#92055
Video2 @6:14) Drs. Cheney &
Lapp. The first drug relaxes you to
enable sleep, the second drug puts
you to sleep.
mm)** Sinequan (Doxepin, Adapin)
(Grade C+) (150 mg bid) ($21. = 100 x
25 mg) (ND 75 - 150 mgs) #94011, is
classified as a tricyclic antidepressant. It
will take effect in 1 hour, and is variable in
duration. This has analgesic and serotonin
boosting qualities, and anti-histamine for
allergies.
nn)** Sinutab (Chlorpheniramine
Maleate) (Grade D) (ND 8 - 24 mg)
#94007-20; #940806-70 is an
anti-histamine and may help as a sleep
modulator. No prescription is needed.
Start at a test dosage of 2 mg. at bedtime,
and if you see improvements, slowly
increase to two-8 mg tablets at bedtime.
This may help alleviate some of the fatigue
and mental sluggishness.
oo)** Spironolactone (Aldactone) (Grade
D) (25 - 50 mg OID) ($12. = 100 x 25
mg) has been used for several years to
treat PMS. It takes effect within 30
minutes.
pp)** Steroids (Grade E) #94009-6
Studies have shown that steroids are of no
use (and possibly are harmful) to M.E. &
F.M. patients. They may, however, work
for depression.
qq)** Tetrahydroaminoacridine (Cognex)
Tocrine (Grade D) (10 mg TID or QID).
rr)** Tofranil (Imipramine) ($6. = 100
x 10 mg)
ss)** Trazadone (50 mgs recommended)
($30. = 100 x 50 mg)
tt)** Ventafaxine (Effexor, Ventafaxine)
(Grade D)(18.75- 12.5 mg BID) ($85. =
100 x 27.5 mg) is used for depression,
especially treatment-resistant depression.
Patients typically take 2 or more weeks to
respond.
uu)** Zantac (Renatidine) (Grade C) (150
mg twice daily) ($48. = 100 x 150
mg) (ND 150 - 300 mgs)
#92033-21; #93018; #94011 is a
histamine H2 blocker. Some M.E.
patients suffer from moderate to
severe chest pains. This may be
caused by an esophagus spasm.
Ranitidine may help to reduce this
spasm. WARNING: always assume
that severe chest pains could be a
sign of a heart attack, and get it
checked out before trying to
alleviate it.
(1)** Tagament (Cimetidine). In
one book the Zantac drugs and
Tagament drugs where called the
same. (400 mg twice daily) ($14.=
100 x 300 mg) (ND 800 - 2,400
mgs) This drug is used as an
anti-ulcer medication.
vv)** Zoloft (Sertraline) (Grade D) (25 -
50mg QAM) ($179. = 100 x 50 mg)
#93047-12, #94009-3; #94011 takes effect
in 1 hour - 6 weeks and will last up to 1-2
days.
23)** ALTERNATIVE
TREATMENTS
a)** Assorted, mainly unsuccessful.
There are various unsuccessful alternative
treatments, although occasionally you hear
of someone who has received benefit; of
these, probably half have a re-occurance of
their symptoms after 1- 4 months.
(1)** Herbalife;
(2)** Intra;
(3)** Maatol.
b)** Aspirin. #93012-4 Dr. Paul Cheney
does not recommend the use of Aspirin,
because it blocks the electron transport
system.
c) ** Bee Pollen (Grade D)?
d)** Chelation (Grade E)? This
treatment involves an intravenous drip to
flush out toxins from the body.
e)** Co-Enzyme Q10 (Grade B) (150-190
mg/ day) #910031; #94020-4; #93046-2.
You have to be on this treatment for up to
6 weeks before you may notice a difference
in how you feel. Drs. Cheney, Lapp and
Goldstein recommend 200 mgs.
sublingually (under the tongue). If this
appears to have little effect over a period of
months, reduce to 50 mg/day. Co-Enzyme
Q10 is an anti-oxidant, and helps
strengthen cell membranes. CFIDS
Buyer's Club offers 200 mg. oil based
chewable (sublingual) wafers, which are
easily broken into quarters or eights for
divided daily doses. Co-Enzyme Q10 is
most frequently taken by M.E. sufferers,
and has the highest reorder rate for the
CFIDS Buyer's Club.
f)** Evening Primrose Oil [Effamol or
Effamol Marine] (Grade B) (6 capsules of
Effamol, with 2 capsules of cod liver
oil/day) ($32/180 capsules) #950301-5;
#93045-10; #93001- 628; (#92002 Video 1
@3:38); #90002; #89001-13. Effamol is
a brand name of evening primrose oil and
should not be substituted for another
version, as Effamol has ingredients which
the others do not. Effamol Marine is not
sold in Canada or the U.S., but is the
preferred supplement. You can make up
for the lack of the marine component by
adding cod liver oil (not Halibut oil). Take
Effamol with food, but do not take after
suppertime as it will affect sleeping
patterns.
(1)** 1995/01 You can have your
doctor apply directly to the maker
of Effamol to have your name
placed on a drug testing program:
Effamol Research Inc. 15 Chipman
Drive, P.O. Box 818, Kentville,
Nova Scotia B4N 4H8
#800-539-3326 #(902)
678-5534/ fax
#902-678-9440. This is
available through the
Emergency Drug Release
(EDR) program at Health
Canada (HC); contact person
is Dr. Mona Akoury at the
Bureau of Non-Prescription
Drugs, phone (613)
954-6456. Your doctor is
required to fill out a yearly
report. The company will
then send your doctor the
Effamol Marine brand,
unavailable in Canada and
U.S. normally, at a cost of
$115 (shipping included, no
GST or PST) for 1,000
capsules. This price is 50%
better than anywhere else.
The patient calls, the
company faxes a form, your
doctor calls Health and
Welfare Canada to have it
released to you.
(2) ** Someone mentioned to me
that flax seed oil was cheaper than
Effamol, and had more than one
amino acid. You might look into
purchasing this if funds are limited,
after an initial trial of Effamol.
g)** Hydrogen Peroxide ??? (Grade E).
From Alive Magazine #149, pg 14.
Hydrogen Peroxide in its normal form is
found in many areas of the world. It is
contained in rain and snow, and "peroxide"
is especially high in colostrum, the first
milk secreted after birth, which activates
the new-born's immune system". I have
not read anything about which form of
Hydrogen Peroxide to use; I am aware that
the liquid form is used for disinfecting and
is considered poisonous.
h)** Laser Therapy. (Grade D) This is
not the same as ultra-sound therapy for
muscles; laser therapy works on the cells.
i)** Magnesium shots/pills. (Grade B)
(1 gm intra-muscular/week, or 250 - 500
mg orally/day) #91036; #91052;
#93018-2; #94024-12; #941005-32;
#94021-3; #950102- 2. Shots are to be
given intra-muscularly. Drs. Paul Cheney
and Charles Lapp feel that the injections
appear to be more beneficial than food
supplements. Magnesium should be taken
with calcium and malic acid.
(1)** (#92057 Video4 @0:28), it is
stated that oral magnesium is just as
effective as intravenous magnesium.
Recommended dosage for
Magnesium Chloride is 300 - 800
mg per day.
(2)** A double-blind study was
performed in March, 1991 and
published in the Lancet, Britain's
medical journal. M.E. patients
were tested and found to have low
levels of magnesium. It was found
that magnesium levels vary
throughout the day, making it
difficult to diagnose using a regular
blood test. A red-cell magnesium
test is much more accurate. In this
study, patients were given one shot
of magnesium-sulphate (a 50%
2mls) per week, then one shot per
month for one year, as a double-
blind study. Magnesium helps with
stress in illness. The introduction
of excess magnesium causes no ill
effects, and is simply flushed out of
the body through the urine.
j)** Magnetism (Grade D-) #9401-4. This
treatment seems to help some people with
muscle pain. There are several products
(eg magnetic beds, sheets, and rings or
pads) that generate magnetic fields - one
called Rumart, is sold at a cost of $4,000 -
$6,000. {PO} {The idea of using
magnetism to alleviate pain sounds
"crazy", but this is one of the more
common "have you tried" items that
I hear about in support groups.}
k)** Melatonin. (Grade D) #941004-3;
#950102-1; #950102- 13 is a natural
hormone and possible sleeping aid, taken
orally. It seems to have some effect on
providing a more restful sleep. Your
body's daytime and nighttime patterns are
controlled primarily by the pineal gland,
which produces the hormone Melatonin in
response to darkness and the hormone
Serotonin in response to light. Melatonin
can be purchased in health food stores, but
the purity varies a great deal. A study was
done with gradually increasing dosages
from .1 - .3 - 1.0, to 10 mg. However, the
doctor who ran the study does not
recommend taking Melatonin until further
studies have been performed.
l)** Milk Thistle (Grade E) ? #93045-6
m)** Mushrooms (Richi, Shitake) ?
(Grade D) #93045-2
(1)** LEM (Lenus Edodes
Mycelium) (Grade E) #93045- 2
"The New York Native 1989 July".
The immature form of the
mushroom may improve the
immune system.
n)** Ozone therapy (Grade F)
#941102-12.
o)** Topical creams for pain #94022-7;
#940701-7. For joint and muscle pain:
(1)** Aurum, non-prescription;
(2)** Emla, contains Lidocaine and
Prilocaine, prescription;
(3)** Pain-free, aloe vera gel with
Capsaicin;
p)** Probiotics (Grade F) #941102-12
q)** Reliv Nutritional Food Products
(Grade D) ATP (Adenosine Triphosphate)
"Ultra Clear Sustained"; "Reliv" (Grade D)
#93018-2; #94021-2; #941005-31 (Drs.
Cheney and Dr. Lapp.) Phone
#1-800-735-4846/ #1-800 437- 1765. Dr.
Paul Cheney recommends the "Reliv
Classic" more than the "Reliv Now".
These products contain vitamins, minerals,
proteins, amino acids and herbs. Reliv
Energize is a fructose drink, a major source
of cellular ATP.
r)** Shark cartilage. (Grade E).
s)** Spices. (Grade E). To increase the
blood flow, some people have tried using
various spices (eg cajun, ginger, curry,
peppers, Cayenne).
t)** Transfer factor (Grade D)
#93018-11.
u)** Zinc (Grade D) (#91002 Video1 @
3:23)
24)** OTHER DOCTORS &
THERAPISTS. Most of the following
doctors' fees are covered under B.C. Medical for
12 visits per year. If you are having financial
difficulties, the government will cover the charge
for the user fee. Contact B.C. Medical Services
Plan, 1515 Blanshard Street, Victoria, B.C. (#683-
7151) and ask for a Temporary or Permanent
Premium Assistance form, depending upon your
financial situation. To my knowledge all these
(physiotherapists, massage therapists, etc.) require
a physician's referral except for chiropractors.
a)** Acupuncture (Grade D). (#91002
Video1 @1:36) These doctors use needles
to puncture the skin, and some people have
found relief from some of their symptoms.
You can also use acupressure by applying
pressure with your hands on these same
points. A good reference book is
"Acupressure Potent Points, A guide to
Self-Care for Common Ailments",
by Michael Reed Gach, found in
book-stores.
b)** Allergist (Grade D) {PO}{Grade
C+}
(1)** It is good to find out if there
are foods that you may be allergic
to since you were diagnosed with
M.E. or F.M. One way to
determine whether or not a food
allergy may be causing of some of
your symptoms is to go on a liquid
diet called Enfood. You must stay
on this diet for at least 2 weeks, but
only under a physician's
supervision. This product sells for
about $28 for a 4 day supply. This
is the only "food" you eat for that
time period. On this diet, you
eliminate all foods, giving your
body a chance to "cleanse itself"
(their term, not mine). You then
gradually start adding foods back
into your diet, till you find the
particular food/additive that may be
causing the problems. Sporadic
elimination of food is time-
consuming and not very accurate for
determining a food allergy. There
are cookbooks for a variation of this
diet, as well as to help you eat
healthier if you have food
restrictions due to allergies.
(2)** If you have a dust allergy,
you can purchase an electrically
charged filter with a carbon filter on
it, which costs approximately $400.
(3)** Keep track of your symptoms,
foods, activities, feelings,
reactions, and medications in a
diary similar to the one at the back
of this manual (See "Living With",
Chapter 9 for an explanation). You
will probably have to do some
detective work to see whether you
can isolate a problem food,
chemical, or action. This will be of
assistance to the allergist. To
obtain further allergy information
call The B.C. Allergy Association
#877-2255.
(4)** Allergists can do skin tests to
see which foods or air-born irritants
you are allergic to. Since your
immune system is not working
properly, you may find that you
now have become allergic to foods
or chemicals that were not a
problem in the past.
(5)** Allergists may help with food
intolerances. Some people are told
they are allergic to milk, which
causes indigestion. You might be
intolerant, and by taking enzyme
aids (such as Lactaid, available at
most pharmacies) you can consume
milk products without problems.
(a)** Foods that are known
to cause allergy problems,
and may increase your
symptoms:
(i)** Nutra-Sweet/
Aspartame,
(ii)** Sugar,
(iii)** Nicotine, and
(iv)** Alcohol.
c)** Chiropractor (Grade D). One
symptom of both M.E. and F.M. is poor
muscle function, since with reduced health
you are less able to fight off misalignments.
If you go to a chiropractor, try to go five
or six times before you decide if the
treatments are working or not. You will
probably feel worse the first few times, as
your back and muscles have to get
realigned in the proper fashion. The
adjustments do not snap bones or
cause arthritis - several studies have
proven this. {PO} {(Grade B) If
"spinal cord inflammation" is part
of the definition of M.E., and if
muscles and the nervous system
depend on the spine in F.M., it
makes sense to go to a chiropractor
on a regular basis. There have been
many people with back and neck
problems at the support group
meetings. My chiropractor has
certainly helped my condition -
every time I stop going, within 2
months I have back problems for an
extended time. Semi-monthly visits
have almost solved my back
spasms.}
(1)** Arch supports. The cost of
orthotic devices which are molded
to the shape of your feet, fit into
your shoes and help your gait and
spine, are usually covered by
Extended Medical up to 100%, and
might help certain back problems.
These are provided by orthopedics
and podiatrists.
d)** Hypnotherapist (meditation, relaxing
techniques)(Grade C-). They teach
relaxation techniques which help to relieve
migraines, headaches, or muscle pain.
Audio cassettes are also available in stores
and may be a cheaper way of learning the
techniques of self-hypnosis and relaxation.
e)** Massage therapy (Grade C) #93063
Massage therapists are required to go
through college in order to be registered in
B.C. They are able to give some relief
from muscle tension and pain. The fee is
about $28 for 30 - 40 minutes. This may
have to be paid out-of-pocket first, and then
you get reimbursed from Medical Services
Plan. Phone your therapist to find out.
On the referral that your physician fills out,
make sure that he fills out 4 different areas
of your body to be massaged, e.g. neck,
arms, back, legs. M.S.P. pays the
therapist an extra fee for each area of your
body that he works on. This allows you to
get the total $28 fee refunded from Medical
Services Plan. Some therapists may do
house calls if the doctor requests it.
(1)** Shiatsu therapy. #91015-10.
There are therapists that practice
Shiatsu, which works by applying
finger pressure on specific points on
the body. This type of massage
stimulates the body's production of
endorphins, which help block pain.
Shiatsu is similar to acupuncture.
This type of massage helps to
alleviate lactic acid and carbon
dioxide buildup in tissues, which
can cause muscle pain and stiffness
as well as body-wide fatigue. You
can purchase home Shiatsu
massaging devices.
f)** Naturopath (Grade C-). These
therapists know a good deal of the nutrition
and vitamin area of the treatment. They
can use a Vega allergy testing machine,
which is able to test for allergies more
accurately than the skin tests. They can
test for more specific food allergies that
you may now be having problems with.
The Vega machine can also be used to test
medications for effectiveness.
(1) #93014-9 contains a good list of
naturopathic assessment and
treatment of M.E.
g)** Physiotherapists (Grade C+) can help
you to stretch your muscles, keeping them
from deteriorating because of your
inactivity. They can also use ultrasound in
treating joint problems.
(1)** TENS (Transcutaneous
Electrical Nerve Stimulation) -
(Grade C-) (#91002 Video1 @
01:36) Physiotherapists offer a
treatment dealing with electrical
impulses, which can be performed
in their office. You can also rent a
portable electronic unit to use at
home to give yourself treatments
more frequently. This unit
stimulates an muscle area rather
than a specific tender point. To use
properly, put one of the pads on
each hand between the thumb and
first finger, at the joint. The
frequency of the TENS machine
should be set at about 2 beats per
second, and pulse rate (pulse width)
should be 60-100 per minute. The
intensity should be just enough to
cause slight muscle contractions.
This therapy is performed each day
for 20-30 minutes, for 2 weeks.
You must then take a week break,
so that the body doesn't stop
producing its own natural pain and
healing chemicals. The TENS
machine seems to work just as well
as acupuncture. You can also
purchase a portable, specific tender
point unit (#92003) from Quantum
Hi-tech Health Systems (phone
#942-9479).
h)** Psychiatrists and Psychologists
(Grade C-). These therapists may help in
dealing with some of the emotional
problems that you have because of this
illness. Beware that some of them may
imply or try to label you as a "depressed"
person. If you do have M.E. or F.M., it is
not because of depression - you get
depressed because you have M.E. or F.M.
It is important that a thorough investigation
is performed to rule out this or other
possible causes for your symptoms. Some
psychiatrists or psychologists will allow
you to have therapy at a reduced rate.
There is an organization that works by
donation called Cascade Christian
Counselling Association (C.C.C.A.)
(phone #585-1411 - Surrey; #854-5413 -
Abbotsford; or #946- 2133 - Tsawassen).
Work only with someone who believes in
M.E. & F.M., as it is very difficult to
convince someone that you have this illness
if he/she does not believe it to begin with.
Psychologists are not paid under Medical
Services Plan, and cannot prescribe drugs.
Psychiatrists are paid by Medical Services
and can prescribe drugs.
i)** Private clinics. #940804-3 Private
clinics seem to be common in the U.S., but
do not seem to have higher success rate
than treatments in Canada by G.P.s.
j)** Private Labs. #940804-3 These labs
may not have quality standards, or
standards for their measurements. As of
October, 1995, there is no test for M.E. or
F.M. The cost of these lab tests is usually
very expensive. Some insurance companies
may send your blood samples to these labs,
saying this test will prove you do or do not
have M.E. or F.M. When the "test" comes
back negative for M.E. or F.M., they
cancel your disability coverage (it has
happened!).
(1)** Resources #93009-4
25)** HERBS & VITAMINS:
a)** Balanced Diet (Grade C). The phrase
"garbage in -garbage out" means something
- you cannot expect your body to do well if
you are not giving it enough (proper) fuel
to energize it.
b)** Choline Citrate (Grade E)
($50/litre, a 100 day supply) (#91022
Video1 @03:03); #92033-21. Available
through Nutra-Chem Pharmaceuticals,
Ottawa (phone #1-800-465- 2965).
Choline Citrate is a mixture of various
vitamins and plants.
c)** Germanium (Grade F) #941102-12
is repeatedly being discussed as having
harmful effects.
d)** Herbs. #91001-2; #950102-16.
Plants and herbs have been the basis for
many pharmaceutical drugs. Aspirin and
Sudafed were both used thousands of years
ago, and were created from plants. Many
herbs have medicinal properties:
(1)** Chamomile - (Grade D) for
sleep, stomach bloating, and
cramping. Let this steep in boiling
water for 20 minutes as a tea before
drinking.
(2)** Echinacea (Grade C-). This
herb helps the immune system.
Note: Do not take over a long-term.
This might be helpful temporarily,
for 2 or 3 weeks, if you have a cold
or the flu.
(3)** Feverfew (Grade E)
#91001-174
(4)** Garlic (Grade D)
#91001-412 Several articles state
that garlic helps for high blood-
pressure.
(5)** Ginkgo (Grade B)
#91001-190; #91001-413; #9346-5;
#94020-8 Note: this herb may
soon be classified as a drug rather
than an herb. A major British
medical journal, "The Lancet"
found 8 scientific studies out of 40
proved Ginkgo had effects on
treatment of impaired cerebral
circulation. This would improve
energy, cognitive ability, memory,
depression, anxiety, and dizziness.
(6)** St. John's Wart (Grade E)
#91001-321 for depression.
(7)** Valerian (Grade D) - a sleep
aid. Sleep-Well (Grade D) ($7 for
90 tablets) is a herbal sleep medica-
tion. There are many herbs that
help improve your sleep. Sleep-
Well is a mixture of various herbs,
the main ingredient being valerian
root which is supposed to be
effective. It also contains Passion
Flowers, Hops, Lemon Balm Herb,
and Linden Flowers.
e)** Vitamins (Grade C). It is important
that you keep your vitamin level up. You
can get over-the-counter vitamins that
include minerals. I suggest taking 2 of the
one-a-day vitamins with minerals daily.
{PO}{The idea of "you get all the vitamins
and minerals you need from a healthy diet"
for a healthy person with today's lifestyles
is not realistic. The idea that a disabled
person with M.E. or F.M. can do this is
ridiculous}. Most of the people I have
spoken to, who try to "cure" themselves
with vitamins get poor results.
(1)** Ensure the content of the
vitamins. Some are processed with
milk products or other ingredients
you might be allergic to.
(2)** Dr. Cheney, (#941005-31),
one of the top specialists in the
world on M.E., wrote "broad
spectrum multi-vitamin support is
very important for M.E. patients".
(3)** If you are taking vitamin
supplements separately, you may
need to take companion vitamins to
aid in the absorption - eg
Co-Enzyme Q10 is properly taken
sublingually (under the tongue) with
oil (because it dissolves in oil not
water); magnesium should be taken
with calcium and malic acid.
(4)** Taking divided dosages. A
number of vitamins only stay in
your system for 2 or 3 hours (eg
Vitamins C), so spreading them out
through the day ensures a consistent
level.
f)** Vitamin C (Grade C+) {PO}{I have
found that larger doses of Vitamin C tend
to get rid of a cold much faster than
without anything - usually 1000 mg. every
hour. 40% of my colds are gone in one
day - whereas otherwise it usually lasts 3 -
6 weeks.} Taking a multi-vitamin will
ensure that the vitamin C gets absorbed
properly. It is not wise to take mega-doses
of Vitamin C for an extended period, as
this could cause kidney problems. Higher
doses of Vitamin C will help increase the
acidity level of your urine, helping to
reduce the severity of urinary tract
infections. Cranberry juice contains very
high levels of Vitamin C, and may be a
healthy alternative to vitamin C tablets.
#93018-17 "Several recent studies have
shown Ester C has a greater ability to
improve lymphocyte activity levels,
penetrate the white blood cells and stay in
them longer than regular Vitamin C".
"Our usual dose is between 1 - 5 gms
daily."
26)** THERAPIES:
a)** Cold water therapy (Grade E) This
therapy involves taking cold baths every
day. The theory is that viruses do not
thrive in cooler temperatures. It is also
supposed to improve the immune system.
#93013-10
b)** Cognitive and behavioral therapy is
being shown through scientific studies to be
a lot less effective than was previously
thought. (#92057 Video2@ :24).
c)** Exercise {PO}{This is the best
example of where I can't put my personal
opinion out as fact. I would like to say
M.E. patients should not do any exercise at
all because, if done irregularly, this could
create more cognitive problems and muscle
pain. The facts are as explained below}
(1)** F.M. - daily light aerobic
exercise (Grade A) This is the best
example of the difference between
M.E. and F.M. M.E. patients
cannot do this level of exercise.
Some swimming pools offer
aquasize programs for disabled or
elderly persons.
(2)** M.E. - very light daily
exercise (Grade C+) Most doctors
recommend this, but only to keep
muscle tone at pre-illness level.
Consider walking one block every
day for 1 month; if you feel
comfortable with that, increase to 2
blocks for 1 month, but "NO
MORE". Many patients overdo
irregular exercise and create more
problems. A stationary bike or a
rowing machine might be
alternatives - with no tension for 1
month at 3 minutes each day, then
(only if you feel better, or at least
the same) increase to 5 minutes for
another month. You get the
movement and stretching without
the strain. Moderate exercise has
been proven to be harmful for M.E.
patients. (#92056 Video3 @6:26 -
Dr. Ishmael Menna. Using brain
SPECT scans, it has been shown
that the brain of an M.E. patient is
less active with less blood flow
following exercise, as opposed to
more activity and more blood flow
showing in a healthy brain. Do
what you can, but do not overdo it
or get pushed into doing exercises
by someone who thinks that
exercise is the way to treat M.E.
Exercise and cognitive therapy have
proven not nearly as effective as
was previously thought by some
doctors. #940805-12
(a)** An exercise level to
maintain health for a normal
person is much higher than
for F.M.; for M.E. it is a
lot lower than for an F.M.
person.
(3)** Dr. Chalmers, a B.C.
Rheumatologist, on discussing M.E.
and F.M., expresses his view that
exercise is like being on a knife
edge - too little is unhealthy, but too
much is also unhealthy.
(4)** There are other ways to keep
your muscles in shape, such as
going to a physiotherapist for
stretching exercises, or stretching
exercises done at home. Massage
therapy is also a good way to move
your muscles.
(5)** If you go to an organized
exercise program, make them aware
that you have M.E. or F.M., so you
don't get pushed above your
personal level. Doctors agree that
exercise will not cure either M.E.
or F.M.
d)** Travelling and immunizations. As
getting an immunization before going to
another country causes a mild injury to
your immune system, it's been suggested to
get your inoculation several months before
you go on your trip. Your immune system
has a chance to recuperate and can handle
new infections.
e)** Flu Shots. (Grade D). There are
various opinions as to whether this is
helpful or harmful for people with M.E.
For those who don't get many illnesses, it
may be better not to take the shots. Dr.
Stiver (at VGH) is doing a two-year study
(to be completed by November, 1996) on
the effects of the flu shot to M.E. patients.
A normal reaction to the flu shot in a
healthy person is a 4-7 day mild
temperature and headache. If an M.E.
patient gets a flu shot, he/she may expect
this same reaction, sometimes lasting
longer, and sometimes more severe. Note:
eggs are used in the production of the
vaccine - care must be taken if you are
allergic to eggs. (#940805-30) Dr. Charles
Lapp of the Cheney clinic does not believe
the flu shots are worth taking, as M.E.
patients do not catch as many
viruses as the general population
because of their over-active immune
systems. #950101-14 Dr. Nancy
Klimas believes in patients getting
the flu shots. {PO}(From what I
have read and heard, both ends of
the spectrum appear to be normal.
Some people get every flu and cold
that goes around; others don't seem
to get sick at all. For those that
seem to catch all the viruses, I feel
the flu shot may be of value. I take
it myself on a yearly basis.}
#941102-32. These shots only keep
you from contracting the flu that is
going around, not getting rid of the
M.E. symptoms.
(1)** A new formulation or strain
of each flu virus (sometimes 3-6) is
produced each year for the vaccine.
(2)** Dr. Jay Goldstein (92/10)
recommends not taking any vaccine.
(3) ** Divided dosages. {PO}{You
may ask if taking half the vaccine
now and half at a later time would
give the same benefit without the
drawbacks.}
f)** Full spectrum lighting (Grade D).
Special fluorescent and screw in lights give
off the same spectrum lighting as the sun.
I don't believe they give off the
cancer-producing UVA and UVB rays, but
ask first. Since sufferers tend to be inside
much of the time, these lights may help as
a treatment for colds and other illnesses.
g)** Hydro-therapy (Grade D)
#941102-30
h)** Hysterectomy (Grade F). Several
female M.E. patients have been told that if
they have a hysterectomy their problems
will "disappear". It appears that this
procedure does nothing to eliminate the
symptoms, in fact some patients have
deteriorated once this has been done. If
anyone suggests that you require a
hysterectomy to treat your M.E. symptoms,
get a second opinion from an M.E.
specialist.
i)** Positive thinking (Grade C). It is
important that you keep a positive attitude
with this illness as stress and other life
situations have an effect on how your body
heals itself.
j)** Dental - removing your fillings.
(Grade F) Some people have tried
removing their mercury fillings on their
teeth. Cost is approximately $13,000.
Some sufferers have received relief from
some of their symptoms; there is a blood
test that doctors can do to see whether you
have higher than normal levels of mercury
in your system. #941005-42; #93032-3 I
saw a 1 hour special on Channel 9 (95/08)
regarding mercury in dental fillings.
Several countries have made the use of
mercury fillings illegal (Sweden & 5 other
countries; California was in the process of
making this practice illegal). The main
suggestion in the show was to leave your
existing fillings in, and any new ones use
alternative products. With children, use
only the alternative products.
k)** REST (Grade A). This is the best
known treatment available for M.E.,
preferably with no mental activity (eg no
TV, reading, or talking).
l)** Stretching.
(1)** Qi gong (Grade D)
#94009-4. A form of meditation,
light exercise and positive thinking.
(2)** Reiki (Grade D) - a deep
breathing program that is taught.
Some patients have received good
results.
(3)** Tai chi (Grade C) - an
oriental style of movement and
stretching.
(4)** Yoga (Grade C).
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End of Chapter
M.E. & FM Manual --Main
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Updated 97/02