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Treatments survey results |
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 LOW-FAT
HIGH-CARBOHYDRATE DIET
Of the 28 patients who
participated in the treatments survey, 21 are on a low-fat,
high-carbohydrate diet--the standard treatment recommended
for CPT II deficiency.
18 of those 21 patients say
they have clearly benefited from the diet. |
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About half of the 21 patients
have been on the diet for 2 years or less, but 6 patients
have been on the diet for 5 years or longer and 4 patients
have been on the diet for 15 years or longer. One
patient said, "The diet has become my way of
life."
One patient reported an
adverse reaction to the diet: increased weight, lack of
energy, lethargy and muscle aches.
14 of the 21 patients
have consulted a dietician or nutritionist for help with the
diet. |
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Comments: "If I'm vigilant
about maintaining this diet, it greatly reduces the frequency,
duration and severity of attacks."
"Major reduction of
symptoms, more energy."
"On the diet
I have no muscle pain."
"Sometimes
it is hard to maintain, especially when I am ill. But when I can
stay on the diet, it works for me."
"Feel
healthier, lots of energy, great for muscles!"
"Feel better, less aches and pains, but I miss some
foods." "I have always eaten
low-fat, high carbs because I am a vegetarian. I do drink non-fat
milk and occasionally eat fish. I eat a lot of tofu and tempeh for
protein and lots of grains."
"Have not
seen much difference."
"Notice
definite increase in energy. Muscles take longer to become fatigued
and I can participate in activities longer before symptoms are
brought on. When eating a meal high in fat and low in carbohydrates,
it takes less time for muscles to become fatigued and there is
noticeably less energy in general. Also good for controlling weight
and health in general. No adverse reactions. I feel my health has
definitely improved since following this diet."
"More energy, less muscle pain."
"Improved energy and less GI distress."
"Not as much weight gain."
"For some
reason, my cravings are for mostly carbohydrates. I used to be a
vegetarian until I was diagnosed with CPT II and was advised that
some protein was probably a good idea. I eat fish, chicken and
turkey, but I do not eat red meat. Both me and my brother love bread
and would rather eat pasta and bread than most things. It seems as
though we crave what our body needs."
" I
am very loose on this diet. I know what triggers attacks and what
helps me through attacks and I use it that way. I eat what I want,
but avoid fats and increase carbs when I have other triggers
occurring. In other words, I understand the benefits of the diet and
use it, but am not on the strict diet." |
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FREQUENT FEEDINGS
15 of the 29 patients say
they eat small
frequent meals to prevent symptoms.
Most of these patients felt they
benefited from eating frequently. Three of the 15 patients
mentioned weight gain as an undesirable side effect. |
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| Comments:
"It is a must! I eat between 6 to 8 times a day, small snacks
and small main meals. I cannot fast. It will bring on an
attack."
"If I make sure to eat
carbs at least 3 times a day I don't experience any CPT
symptoms."
"More energy, less low
energy plateaus. Feel better. Six meals a day, but 10 pounds
overweight."
"I eat around the clock
because if I don't I have muscle pain."
"Frequent eating is essential, otherwise attacks of muscle pain
and weakness occur."
"Definite
benefits in preventing muscle symptoms such as muscle soreness and
fatigue. Helps give more balanced energy levels throughout the day.
Without frequent feedings, muscle pain begins to develop after
extended period of fasting. Especially key to make sure I have eaten
before any form of exertion, otherwise muscles begin to fatigue very
quickly. No adverse reactions. Very beneficial."
"More energy and less symptoms."
"Ever
since college and especially during pregnancy I've tried to snack
all day. Those are my most comfortable days and I like that. I am
very careful not to overeat. The smallest morsel sometimes will get
me over the hump to avoid an attack." |
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MEDIUM-CHAIN TRIGLYCERIDE OIL
6 of the 28 patients say
they have tried MCT
oil, but no one reported any benefit. Only 1 patient is
currently taking MCT oil.
The length of time MCT
oil was used varied from 1 year to a few weeks. |
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| Comments:
"I really couldn't handle the taste so I needed to quit, and I
saw no difference in symptoms when I quit."
"Didn't seem to work."
"Did not
help muscle symptoms and caused diarrhea and nausea."
"I only used a teaspoon in cooking. It made me sleepy. Later I
found out through medical testing that I have a very low tolerance
for medium-chain triglycerides."
"Caused
abdominal pain, wind and bloating." |
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CARNITOR OR L-CARNITINE
18 of the 28 patients
have taken Carnitor or
L-carnitine, and 16 say they are currently taking it.
The length of time
Carnitor was used varied from 2 weeks to 13 years.
The majority of patients felt they had benefited from taking
Carnitor, but 2 patients said they had no noticeable
benefit. Of those 2 patients, one continues to take it but the other has stopped.
Two patients reported G.I. distress as a side effect and one
patient reported fishy body odor as a side effect.
Note: Carnitine supplements may cause a fishy breath
odor. The odor results from excess growth of intestinal flora
in the gut which is promoted by carnitine. The
odor may be reduced by increasing the bedtime dose and by spreading the other carnitine doses more regularly through the day. Diminishing the carnitine dose should also eliminate the
odor, but it may be better to treat with a broad based antibiotic, so that the carnitine level can be maintained.
Source
Carnitine
Therapy for Fatty Acid Oxidation Defects by Susan
Winter, M.D. |
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| Comments:
"I take 3000 mg/day at present. I've taken as much as 6000
mg/day during the last trimester of pregnancy. Without Carnitor, I
become completely disabled by muscle pain and weakness. The adverse
reactions I've found to be the most difficult to deal with is severe
G.I. upset."
"I've taken 990 mg. twice a day for three years and have no
muscle pain."
"Carnitor has greatly
reduced the amount of muscle pain."
"I seem to get over infections quicker. I was taken off of it
for 1 year. Then when they found a respiratory chain defect (in
addition to CPT deficiency) I was put back on it."
"Improves muscle tolerance for activity."
"Tried L-carnitine for about a month but had no noticeable
benefits in terms of preventing symptoms such as muscle fatigue. No
adverse reactions."
"(Since taking
L-carnitine) I have had only one attack and didn't even require
intravenous glucose or hospitalization. Staved it off on my own
by drinking and resting. Did not miss any work."
"Increased energy levels, decreased appetite. Initial bowel
looseness which disappeared." |
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CORNSTARCH
7 of the 28 patients have
used uncooked
cornstarch mixed with water or orange juice as a
treatment, and 6 are currently using it.
The length of time
cornstarch has been used varied from 6 months to 1 year.
6 of the 7 patients felt
they benefited from cornstarch, especially in situations
where they are more active or involved in exercise. |
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| Comments:
"Absolutely amazing! Cornstarch has definitely made the largest
impact on my daily minor pains. I take 4 tablespoons in orange juice
2 times a day. It gives me more energy to get through the day and I
snack less."
"No benefit over
high-carbohydrate meals for exercise or work less than 1-2 hours.
For longer periods of effort, I drink water and cornstarch
continuously, and again 30 to 60 minutes after."
"Only taken before scheduled exercise." |
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INTRAVENOUS GLUCOSE
6 patients have received glucose
IV as treatment during attacks of muscle breakdown.
Some patients felt they
benefited from intravenous glucose. |
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| Comments:
"It helps when I have major episodes."
"Nothing noticeable."
"I've
used it once. Helped lessen muscle pain." |
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OTHER TREATMENTS
3 patients reported using
vitamins and supplements such as CoQ10,
vitamins B, C and E,
lipoic acid and selenium. Comments: "No benefit
perceived, but theoretically they are supposed to help fight
free radicals and promote energy."
"I feel better when I take CoQ10 and B vitamin
complex."
3 patients reported using
creatine monohydrate.
Two of the 3 reported benefit. Comment: "It's helping to some extent."
1 patient reported using bicarbonate
to prevent renal failure. Another patient reported drinking
lots of water every day to keep the kidneys healthy.
1 patient reported muscle
benefit from regular walking. Comment: "Probably
not a treatment as such, but I've found that regular walking
has definitely increased the amount of exertion my muscles
can take." |
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Thanks to all who have participated. To read the original survey
questions, visit the survey
page. |
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NEW TREATMENT RESEARCH PROTOCOL
