|
Subject:
Adult
Primary diagnoses: D.fragilis infection — primary care
physicians were not familiar with D.fragilis and questioned it's
ability to cause symptoms.
Length of illness: 1 year
Treatment: Flagyl x 2 — some reduction in symptoms. Tetracyline
x 1
Severity of symptoms: moderate to severe
Outcome: most symptoms greatly reduced as at September 2000.
Hi,
I began having diarrhea after Christmas '99, first waving it off
as a reaction to some of the more elaborate foods I had had during
Christmas dinner, or perhaps a slight case of food poisoning from
a little diner I had eaten at a couple days before. Yet as the very
loose stool continued for over a couple weeks, I went to my doctor
(at the time I was still seeing my pediatrician, yes, I was a bit
old for that!) and they took 3 stool samples.
They found D. Fragilis right away; however, they had not heard
of it before and had to do some research to come up with a suitable
solution. I was put on Flagyl which i took while away
at school, but it had no effect on me.
Let me tell you, experiencing the explosive diarrhea in
the university floor bathrooms was not a great experience. I was
given a book on IBS by a friends mother who has many gastrointestinal
problems as well (although she is gluten intolerant) and I began
on several limiting diets to see whether this problem could be related
to a food intolerance or allergy. I cut wheat, sugar, and dairy
from my daily diet. Whether it was from the lack of sugar
or from the ameoba itself, i became very depressed, and still am,
as well as extremely cranky and irritable. I truly feel
awful for all those who had to be around me constantly for my mood
would swing in an instant. Not only did I become obsessed with food
(since i couldn't eat a lot of it), I also began craving sugar.
On spring break they put me on the flagyl again, yet it wasn't doing
anything but rip up my stomach more so I stopped in the middle of
the treatment, opting not to finish the pills. Another
stool test showed D. Fragilis but in a much smaller count, which
seemed to satisfy the doctors for the time being (by this time i
had switched to another doctor who really didn't do much for me).
I began taking acidophilous, Lactopherin, and pancreatin to rebuild
my intestinal flora. After a couple months my symptoms began to
fade around the end of May, and I thought I had conquered this beast.
Coming home for the summer, I was still very cautious about the
foods I would eat, staying away from really fatty, greasy, and sugary
foods, however upon weighing myself I noticed I had lost over
17 pounds. In July the symptoms started again, worrying
everyone, especially me.
I was switched to my mothers doctor, who speculated that the ameoba
had ripped through my stomach and intestines, causing it to become
very sensitive to foods, and that it'll simply take time to heal.
After a couple weeks of the worsening symptoms, I was given another
stool test, and during the week we waited for the results, we were
recommended to a GI specialist, who i went to see immediately. Of
course by this time I had lost more weight, concerning him
greatly, and he wanted to schedule me for a barium swallow and possibly
a colinoscospy. My results came back from the stool test,
showing the D. Fragilis back in full swing. During my down
time the little buggars must have multiplied and gotten ready for
another attack on my system.
Even being a GI specialist, he had never heard of DF, and had to
look it up. He, as well as the last doctor, was confused
about its nature and how it is not considered a pathogen by most.
The pediatrician i had seen most likely thought that the DF
was accompanied by Giardia which was causing my symptoms, and therefore
gave me the ineffective flagyl. Upon looking it up,
the specialist put me on a tetracycline, of which i am on the last
day of dosage, and have not seen any results.
...... coming across this web site we discovered the positive
affects of Iodoquin (sp?). We are now waiting for the doctor to
return our call about administering this drug. During the
last couple weeks I have become extremely fatigued and intermittently
depressed. Every morning my stomach wakes me up at am telling
me its time to flush out my system and some days I have diarrhea
up to 8 times, while others I may have just 3 very bad bouts.
....Hoping for the best, i'll take this new drug, even though the
side effects do not look pleasant, ...... I can't wait to gain back
the weight, I really hate the way i look right now and the thought
of people thinking I'm anorexic is horrible. Its amazing I haven't
gained it back, considering I eat like there's no tomorrow- big
meals and lost of snacking between. I really feel for those who
have had this for as much as 5 years. We all get through it though,
day by day.
R
Hi Jackie,
Well, the day I wrote to you was the tenth and last day of
taking the tetracycline, and it was also the day that I completely
stopped having diarrhea. At first the shock of not going
to the bath room seven times made me a bit uneasy, however I took
it as a turn for the better. The hard stool lasted three days, but
it wasn't a lot and it made me wonder where all my food was going!
Then I finally 'had the urge' to go (first time since the end of
the diarrhea) and it started as hard, yet my stomach started to
really hurt and it turned soft, very soft. I believe its due to
being stopped up in me for so long instead of the return of the
ameoba, although i could be wrong because the morning after I had
diarrhea as well. I've gained back a couple pounds, yay! The thing
is, after reading all the emails on your web site, I'm so sure this
'normality' will last. It seems that tetracycline didn't work for
many people and if it did, they relapsed after a short while...
so I'm a bit skeptical at the moment. Also, I forgot to mention
that all during my DF infection (assuming its over!) I had very
bad anal itching and horrible flatulence. The flatulence
has remained, and that's another reason i think I might relapse
back into the DF. The itching is another thing- I've heard
that pin worm can carry DF into the body, and pin worm causes anal
itching... have you heard this as well? (the pin worm being a carrier
part). So as of now, I'm not sure where my treatments are
going - for the moment we're just waiting to see how it goes. Its
almost strange to be normal again... I've become accustomed to how
I look, and although I hate it, its also going to be hard to gain
back the weight. Very psychological, but i know it'll be easier
than I think, since i've already begun! Of course you can post the
email on the net; I'm happy to release any information that will
help others get through the struggle- I know its a difficult one!
R
Jackie,
I finished the tetracycline about a week and a half ago, and
had another stool test to establish whether or not it had worked.
During the medication I felt great, although I still wasn't gaining
back the wieght. Not only was I eating twice as much as
I did before I was sick, I was (and still am) on powdered shake
mixes to gain weight! Well, the tests came back a couple days
ago, and the DF is back in full force- they also found white blood
cells, leading them to think I may have some kind of infection,
maybe Colitis or something.
We set up an appointment with the DF specialist at Yale-New
Haven Hospital for October 6th, and they may want to give me a colonoscopy
(They didn't last time) just to be sure its only DF they are dealing
with, and not a mystery bug as well.
I'm hoping I dont begin loosing weight again, because from my current
weight (104 lbs) that would not be very healthy. I had the feeling
that the tetracycline wouldn't work simply from reading the emails
on your web page, and whatever Dr. Bia (the specialist) perscribes
will be the next step; whether its Iodiquinol or another approach.
I've heard that the side effects (other than the possibility of
going blind) on Iodiquinol are quite harsh - do you know anything
about it? I'll keep you posted as to what happens. Thank you so
much for writing!
R
Hi Jackie!
...... Well, I went to see a specialist at Yale New Haven Hospital
about a month ago. He didn't believe us when I said I've have
DF for a year now, so he took stool sample (my fifth test...) and
tested it at his own labratory. When indeed it came back positive,
he put me on Paramomysin (also called Humatin), which I took for
2 weeks 3 times a day.
The same weekend I went to see my regular GI doctor for a Colonoscopy.
Everything went well (except they had problems with the IV - which
I didn't like since I hate needles as it is!) The results
showed that I had an inflamed and swollen colin, but nothing
too bad, thankfully. He gave me Asacol to reduce the swelling.
I've
been off of the Paramomysin for a little over a week and things
are about the same. I have a heavy stool movement in the
morning which is very soft and flakes in the water, but is not complete
diarrhea, which is good. We decided to wait a couple weeks until
I'm tested again so that if I'm going to relapse with DF then it
has time to do it. Next week is the due date for my stool samples,
and then I"ll find out whether I still have it around the second
week of December.
I dont know how to feel anymore. Its been such a long process (I
can only imagine how it's been for you!). I've been eating everything
in sight just about, and haven't gained an ounce! Its frustrating
sometimes, truely. I eat more than anyone I know. ...... I really
want to gain weight, its so hard though. I know it'll happen; I
just need to be patient. ..........I"ll keep you updated on the
next stool test and weight gain process..........
R
Jackie,
After the tetracycline, it turns out that I had relapsed. I went
to see a specialist at Yale New Haven Hospital; Dr. Frank Bia, and
he put me on Paramomycin (humatin) 3 times a day for 2 weeks. I
was still
skeptical that it would not work, having been through several other
drugs, however - it seems that it has! I've been off the drug for
about
2 months, and have been tested twice since then and both have come
back negative. Its such a relief. DF lasted in my system for just
over a
year, I almost miss the little guys! I can eat whatever I want now,
although my intestines are still recovering and can be set off quit
easily if I eat the wrong thing. Greasy and fatty are still a problem,
but not as much as they were with DF.
R.
|
