For the past 7 years, I have had an undiagnosed digestion problem. Its
symptoms are nausea and vomiting.  I have seen countless doctors -
several gastroenterologists, infectious disease, neurologist,
allergist, nutritionists, hypotherapist, holistic doctors,
immunologist, cardiologist, ear/nose/throat, and chiropractors.  Each
doctor ran me through a full work-up of tests.  All tests came back
negative.  On one hand that is good, because they found nothing wrong.
On the other hand it is frustrating, because they did not find the
cause.  Bottom line is that each time I lose 15+ pounds and the
majority of my strength.  It is especially hard because I have a very
active lifestyle.  I play hockey, take karate, coach hockey, go to the
gym, and maintain a healthy family/social life.

My symptoms:  at first I belch a lot, get full only eating a little
amount of food, feel
nausea, get the watery mouth/throw up feeling.  Could be on/off for a
week or so, then
have 2/3 days of vomiting about 5-10 times a day, then about 2 weeks
of nausea.  During those 2 weeks, I randomly throw up about once every
other day.  I have no appetite and lose a lot of weight quickly.  Then
randomly, I begin to feel better.  My appetite slowly comes back and I
slowly start to gain my energy, strength, and weight.  At first they
thought it was SMA syndrome (eventually ruled out), then they thought
it was cycle vomiting (ruled out), then they thought it was the
gallbladder (removed, then got sick  again), then they thought it was
gastroparesis (ruled out due to gastric emptying test), ???.now they
do not know.  I need Dr. House (from the FOX TV series, or someone
similar who can help)!  Who can help????

I never have pain in my stomach, just nausea & vomiting.  
Meds tried: anti-emetics zofran, compazeine, phenergan and reglan.
Also, tried imitrex, motilium, propulsid and zelnorm.

I had my first episode in 3/1999 while in Cancun, Mexico for spring
break.  I got sick the 2nd day there, and didn?t leave the room from
the 3rd day to the last day of the trip.  I had other episodes in
11/99, 5/2000, 7/2003, 9/2003, 9/2004, 3/2005, and 3/2006.

I have also tried the holistic approach by taking whole food
supplements, different body system cleanses, etc.  I eat well.  I do
not eat fried foods; never eat fast foods, etc.  I do not eat cheese
nor drink milk (at advice of one of my holistic providers).

Each time the amylase & lipase tests are always normal.  
Stool tests are always normal.  Parasites are always negative.

I have had a gambit of tests:  3/1999 ? 1-week hospital stay due to
nausea/vomiting.
11/1999 ? 1-week hospital stay due to nausea/vomiting.  Small bowel
test showed only slight dilation in small intestine, very little
reflux.  The obstruction series was normal.  CT scan ? slight
narrowing of duodenum, but doctor convinced that the symptoms aren?t
due to this.

5/2000 ? Two ER visits for IV fluids due to nausea/vomiting.
12/2000 ? gastric emptying test shows normal after 2 hours, but some
delay after 4 hours.
Small bowel transit was normal.  The actual gastrogram was normal. 
The small bowel motility showed retrograde MMC's with some
simultaneous MMC's overall felt to be consistent with a neuropathic
disorder of the GI tract.  I reviewed upper GI series, thought that
the site of narrowing was too proximal to be caused by SMA. * Possible
cyclic vomiting.

7/2003 ? ER visit due to nausea/vomiting.  Obstruction series - no
evidence of abnormal bowel distention. Nonspecific bowel gas pattern.

9/2003 ? 4-day hospital stay due to nausea/vomiting. Obstruction
series - no evidence of abnormal bowel distention. Nonspecific bowel
gas pattern.  * No change since 7/3/03 series.

10/2003 ? Neurology à MRI of brain - no evidence of acute intracranial
abnormality. EMG of arms & legs - all muscles studied were normal. No
electrophysiologic evidence of polyneuropathy or another neuromuscular
disorder at this time.

10/2003 ? Infectious/Tropical Disease ? blood tests normal. Referred
to neurologist.

11/2003 ? GI (second opinion) - symptoms are not classic cyclic
vomiting.  Thinks it is a motility disorder of the small bowel, but
without any specific precipitating factors that he may be able to
avoid.  Suggests to repeat upper GI and small bowel follow through if
symptoms occur again.  Also, suggests possible clinical trial, if
available.

9/2004 ? 3-day hospital stay due to nausea/vomiting.  Small bowel
follow through - small amount of gastro esophageal reflux.  Otherwise,
unremarkable upper GI and small bowel examination.  Began to get
better, then severe pains in stomach.  First time I ever had pain with
the nausea/vomiting.  Tests showed gallbladder had become diseased. In
10/2004 - Laparoscopic gallbladder surgery

10/2004 ? Allergist - complete food allergy skin prick test - no
allergies/all negative.

10/2004 ? Immunology - No Hep b, No hep c, no autoimmune disorders.
Immune system is actually very strong, good antibody levels.

12/2004 ? Cardiology - Tilt Table Test was negative.  > test was to
check for pots syndrome - orthostatic insuff., autonomic cause for
nausea/vomiting.

3/2005 - Diarrhea for 4 days then nausea/vomiting for 5 days -
possible bad stomach flu, recd IV, good for 4 days then sick again for
a day, lost about 13 pounds.
> Endoscopy - normal except for very small (1 cm hiatal hernia) - not
cause of nausea/vomiting.  > Obstruction series - normal.      > EKG -
normal.

3/2006 ? I was ill n/v for 3- 4 days. Another 3 weeks of nausea and
wt. loss, suddenly better.  Gastric Emptying Test - normal - "you
probably don't have gastroparesis"

* currently taking kefir as recommended by holistic doctor, to restore
flora and good bacteria in stomach.

Dear Sir:   I recently was diagnosed with IBS, well, in my research I
came across two things that you might discuss with your doctor.  I
didn't see any mention of being tested for celiac disease.  My neice
has this and it took them 2 years to find it.  Also.... I came across
an article, and I do not know it its true, but there is a problem with
some parasite or bacteria in the small colon that can only be detected
by a breath test.   It sounds funny, but I did come across it.  My
prayers are with you.

dianasue,

I'm sorry that you are having such a difficult time with your medical
problem.  Sadly, the medical profession has become such a complex
business that illnesses outside the "usual suspects" require a patient
to be a detective in order to get a proper diagnosis and treatment.

I don't have a magic answer for you, but I do have some suggestions to
help you be proactive in your care.

First, in every medical specialty there is a doctor or two that LOVES

con't...

a challenge.  They practice medicine as an artform and the more
difficult the situation, the happier they are.  These guys are miracle
workers... okay, not really... they just do their homework and they
don't give up till they solve the problem.  Luckily for you,
gastroenterology seems to attract more of these guys than most of the
other specialties.  (Pulmonology and Interventional Radiology do too).
 I hear you... how do you find one of these guys??  Start asking
people who might know.  Understand, nurses that work in hospitals
aren't supposed to make referrals, but they are likely your best
source of information (so don't bother calling the GI lab at the
hospital.)  Ask everyone you know if they know a nurse that works in
GI, Surgery, Critical Care, ER... and ask them, Who is the best GI guy
and why?

Contact the Crone's/Colitis organization in your city.  Go to a
meeting or a fund raiser and ask everyone there.

The same 1 or 2 names should start coming up regularly, people will
LOVE this doctor.  They will talk about how kind he is, how he does
the impossible, how he listens and doesn't give up, heck, he might
give his long term patients their flu shots.  This is your guy, he's
better than a TV doc cause he's in your town.  He may not be taking
new patients, or the wait to see him may be months.  Don't take no for
an answer and don't give up.  His staff protects him because he would
take every patient in the world because he believes in his heart that
he can help them.

Take him all your records.  Make a list of notes so you will be
organized and thorough when you see him.

I know that seems like a lot of trouble, but it will be worth it.

In the meantime, if you haven't already, try the Blood Type diet. Lots
of people have food "intolerences" that act like allergies, but never
show up on tests because they aren't allergies, they are intolerences.
 Get a book by Dr. Peter D'Adamo.  He developed the BTD as a healthy
way of eating not as a weight loss program.  Some copycats have tried
to make a weight loss diet from his research so don't waste time with
them.  BTD won't hurt you and it just might help.  It's simply a list
of foods you should avoid, a list of foods that are beneficial and a
list of neutral foods.  Either way, you are being proactive and taking
charge of your recovery.  If you don't know your blood type, go donate
a pint.  They'll be happy to tell you because you saved someone's
life.

Best wishes to you.

@richardj34-ga 

My instinct is that you have some lingering bug (amoeba, bacteria) it
just seems odd that you started this in Mexico.

Have you found any way of triggering it ?
- perhaps that would show up what is wrong. 
Do you have any reactions to specific foods ?

My inclination would be to experiment with foodstuffs and rather
disgustingly freeze your vomit for examination.

I would also try highly spiced food, chilli, pepper etc are eaten
because they kill things off, not just for the endomorphine kick.

I would also be inclined to look for a doctor with South American experience.

@dianasue-ga 
Sorry to hear about your IBS - from what I've heard it sounds very unpleasant.

My brother had it, and was being treated with the various drugs in A-Z
order as they came up on the doctor's computer - when he hurt his
back.

He went to a kyropractor, by accident a certain type, who specialized
in moving muscles rather than bones. Miraculously before his second
visit his gut had ceased hurting (and his back).

She explained that the intestines are strung on muscles, and that they
can get twisted (or in some sort of rictus).
Ludicrously, 'stress' can get the muscles working against each other,
the easiest example is on a female's shoulders, where they get 'knots'
of muscles.

In both of your cases, it is worth trying something that is harmless,
but not conventional practice.

What is the color of your urine? If it is dark then your sytem may not
be eliminating toxins properly. I would like to suggest using a
teaspoon of Celtic Sea Salt and a cup of distilled water to cleanse
your livers and kidneys. Sea salt has almost the exact composition of
minerals as blood. Taking sea salt and distilled water three time a
day is like getting a blood transfusion on the cheap.
For pennies a day you will begin to see your urine turn clear. This is
an optimal acid/alka;line balance.

I would also like to suggest taking a tablespoon of apple cider
vinegar with a tablespoon of cinnamon three time a day in a cup of
carrot juice or apple juice.
This will also provide good flora and be like and internal douche. Try
this for two weeks and see if you have any improvement. The best kind
of apple cider vinegar is unfiltered and cloudy with the mother. Look
for it at a health food store. I have been researching A.C.V. for over
a year now and I am convinced that this sour remedy could be the
answer.
http://curezone.com/blogs/f.asp?f=179

thank you all for your comments and thoughts.
I was tested for celiac disease; tests were negative.
I am scheduled for the "lactulose breathe test next week." Maybe that
may find something.

You are absolutely correct in saying that I have to be an organized
detective and can't give up.  I have copies of all of my records,
tests, doctor notes in a few organinzed 3-ring binders.  I am still
trying to find the right doc!!

Great idea about talking to nurses. I will try it.

A friend of mine got me a book on bloodtype diets.  I have been following it.

I certainly appreciate all of your thoughts and feedback.

- Rich

Hello there,

I suggest that you try yoga. Hatha yoga to be precise. I am 99% sure
that it will cure your disease. So find a good yoga
guru/teacher/instructor and tell him that you want to do bowel related
exercises and may be explain him that you are looking for a cure to
your disease. I am sure this will help.

Hope this helps.

Ankur

First off, I'm sorry to hear that this has been such a difficult
process.  Unfortunately, gastrointestinal problems are notoriously
difficult to diagnose, and often even more difficult to treat
long-term.  (We didn't even know H.pylori causes ulcers until the
early 90's, people still thought it was stress, coffee, etc)
From your history, and I offer this with caution as I've not reviewed
your labs or examined you and this obviously does not count as a
full-fledged medical opinion, but your symptoms are very consistent
with cyclic vomiting.  Here's why I'd say so:
1. Timing-months to years between episodes makes any sort of chronic
infection unlikely (unless you're constantly rexposing yourself i.e.
the neighbor's well water or something)
2. The consistent lack of diarrhea (especially bloody diarrhea) makes
Crohn's, Ulcerative Colitis, celiac disease, & irritable bowel much
less likely.
3. All your normal studies.  Cyclic vomiting is, by definition, a
diagnosis of exclusion.  This means that you can't make the diagnosis
accurately until you've checked for some basic alternatives. You've
had more than the basics checked, from the sounds of it.  Whoever told
you that it was 'ruled out' should probably explain that a little
better to you.
The other things posted to try (yoga, diets, chiropracters, etc) are
likely harmless, and if they help you (or help you deal) with your
discomfort, all the better.  Best of luck.

All of your feedback is extremely appreciated!!

Update: results of Breath Test showed an overgrowth of bacteria.
(Could this be flawed because i took kefir twice a day to promote good
flora? I do not know.....)

Also, some bloodwork from promethius labs showed that I have a
predisposition to lactose intolerance.

Thanks again.


PS I will speak with the doctor to see why they ruled out cyclic vomiting

My fiancee is going through almost exactly the same thing you are. 
We're banging our heads against the wall trying to figure out.  If we
find anything, we'll post it here.

Dear Sir: By the sounds of your stories, it relates to what my 25 year
old boyfriend has went through and still is going through, hiatel
hernias and all. He went undiagnosed for a couple years until they
diagnosed him with cyclic vomiting syndrome. He is as well very
healthy and is trying to get to the bottom of this condition as are
you. We have found help by going to some of the best doctors for CVS
which I would advise you to do. The unfortuante thing about CVS is
that there is no cure. But doctors can help you to control it. Dr.
Fleisher is a name that is well worth googling for your condition. CVS
strikes my boyfriend for unknown reasons, usually has been 2 times a
month for the past year, hospitalized many times for dehydration. Dr.
Fleisher is a sincere well known doctor and will make your anxiety of
the illness you have diminish, which I assume sounds like CVS to the
pinpoint, relating your stories with my boyfriend's. My guess is the
same as what I assume for my boyfriend. You have a fear of your next
episode and because the episode of nausea and vomiting is so harsh on
you, you constantly stress on when your next episode will be, forcing
your body to go into another episode. Expecially before big events in
a person's life (trips, marrige, etc.) My best advice is to see a
doctor for CVS and possibly try anti-anxiety meds. My boyfriend is
currently trying zanax, remeron and amitriptline (spellings not
correct). when episodes come along, to abort, he does the zofran and
lorazepam to sedate and sleep the episode off. I really hope you can
find a way to control this, as I wish for my boyfriend too, because I
see how disasterous something like this can be to someone's life. All
the best to you, have faith.

A friend of mine vomited several times a day for many years.  He went
to doctors, had dozens of tests--no one could figure it out.  He
finally figured it out himself: it turns out he's severely lactose
intolerant.  He gave up ALL dairy about six years ago and has never
had a relapse.  FWIW.

If I were you, I'd get tested for Ciliac. My sister-in-law went
through something similar in her early to mid twenties, it took them
years to find out it was Ciliac disease. All it takes is a siple blood
test to test for your TTG and IGA levels.

Also consider severe lactose intolerance. This is different from a
food allergy and why it wouldn't show up on a food allergy test.

But, mostly consider...

Also, THIS IS IMPORTANT. Find a doctor in your area that does hydrogen
breath testing. I could almost guarantee that you have a bacterial
infection in yoru stomach. I had the same symptoms and they started
after a trip to Mexico when I was 14. At the age of 20, when I finally
did something about it, I had 120 times the normal bacterial levels a
person should have - and I was sick ALL the time, almost every time
after I ate (this could be throwing up, pooping, etc). I could lose 10
pounds in a day or over a few days, all from being sick. To look for a
doctor that does the hydrogen breath testing, call a GI doctor. My
doctor (I live  in St. Louis) is out of this practice
(www.gidoctor.net) and you can read about the hydrogen breath test
there.

Good luck. 
:)