Help figure out what this disease is!
September 28, 2007 6:09 AM   Subscribe

My lady friend has been sick for a year, and nobody can figure out what's wrong. Has anyone had any experience with this kind of sickness?

My lady friend of 8 months has been stricken with a mysterious illness for over 1 year. It started when she went to Canada last year for a summer semester where there was a lot of stress, emotional turmoil and horribly bad food. The way she describes the food is pretty bad; greasy, old, undercooked, etc. She got really sick after eating rice and salmon (a result of which she now hates seafood), and thinks that's what started everything, along with all of the stress and other bad food.

The illness is multifacted, but I've noticed a pattern that's been going on for a while. Every two weeks she gets sick for a almost a full week, where lots of bad stuff happens. She gets symptoms that she describes as being identical to having the flu. Her stomach and abdominal region are in intense pain. Sometimes her abdomin has a dull pain, while sometimes it feels like a knife stabbing into it. For a few months it was on the upper right side, not close to her stomach, but lately it seems to be coming from (approximately) where her stomach is.

She also gets intense headaches during the cycles, along with nausea, gastrointestinal problems (diarehea, constipation, etc) and just about any and everything that goes along with having an intense cold or a flu.

She's also extremely weak and tired, even when the cycle isn't going on. When she's well for a couple of weeks, she can go out on walks and drives, run errands, etc, but gets tired and worn out pretty easily. When she's sick, though, it's nearly impossible for her to do anything but sit or lay down (just like a flu).

She's had tests upon tests upon tests from every kind of doctor imaginable. From MDs to natural doctors, she's been to every kind, and none of them can tell her what's wrong. She received a general diagnosis of "IBS" which is BS; even the doctor who told her that admitted that it was a general diagnosis and he didn't know what was wrong. She's had tests where some doctors have thought it's parasites (which goes along with the cyclical sickness), but she's tried numerous things to get rid of those, too. From strong medications (which almost killed her, but did nothing for the sickness) to natural herbal stuff, nothing's worked.

She eats extremely healthy food, and has for her whole life, so diet shouldn't be a problem. She's currently not eating gluten and cutting back severly on dairy in an effort to narrow down the possibilities, but that's been going on for months and there have been no improvements.

The doctors have done every conceivable test for mono, cancer, STDs, etc, etc, etc...everything that can be tested for has been, and nothing has turned up. She's been to more doctors than should be legal. We're really at our wit's end, here. She's been sick for over a year, and it's driving her crazy. Has anyone ever experienced anything like this, or have any idea what this could be? I'll be around most of today to answer any additional questions that I can. Any and all help is greatly appreciated.
posted by omnipotentq to Health & Fitness (46 answers total) 6 users marked this as a favorite
IANAD, and anything I offer will be a long shot, but has she been tested for giardiasis? More here and here. I grew up in an area of the US during an outbreak, and it sounds similar.
posted by cocoagirl at 6:32 AM on September 28, 2007

I'm glad to see she's cutting out gluten, as those symptoms sound a lot like what my Grandma went through with Celiac.
posted by sanka at 6:34 AM on September 28, 2007 [1 favorite]

Echoing cocoagirl, I had giardiasis and I had very similar symptoms for about 8 months before I got tested and cured with no recurring problems.
posted by piers at 6:38 AM on September 28, 2007

Response by poster: Thanks, cocoagirl. I've forwarded the information on to her and will update once I hear back.

(On update, thanks for the concurrence, piers)
posted by omnipotentq at 6:41 AM on September 28, 2007

Response by poster: *Preview*, not *update*, sorry.
posted by omnipotentq at 6:42 AM on September 28, 2007

This baffling illness could really be anything. Depending on how old she is, you might be able to narrow the search down. Also, if you're under the age of 85, you probably should stop referring to her as your "lady friend".
posted by Caper's Ghost at 6:43 AM on September 28, 2007

Are there any ongoing associated psychological symptoms? My gut reaction to this history, no pun intended, is to wonder if there is any possible underlying physical cause that would not have been picked up already by appropriate investigations.
posted by roofus at 6:43 AM on September 28, 2007

Response by poster: roofus: No real associated psychological symptoms, other than being disheartened because it's been a year and there's been no improvement. Can you be more specific with what you mean?

caper's ghost: We're in our early 20's, but we're old school. :)
posted by omnipotentq at 6:55 AM on September 28, 2007

This sounds horrible, and I'm very sorry your girlfriend has to suffer through it.

Is she under quite a bit of stress now (I mean, aside from the stress of having to deal with this?). I ask because during my junior year of college, I was under quite a bit of stress because of a chronic illness I was dealing with (turned out to be just asthma, but too months to diagnose). I was also under a lot of stress because of school and personal issues. I also had chronic "potty issues" where I was taking almost a pack of Immodium a day, and still running to the bathroom several times and hour to crap my brains out. A lot of blood always accompanied this. My stomach always hurt. Sometimes it was dull, sometimes it was stabby.

But, even with all that, I never brought it up to the doctor. Because I'm stupid.

Eventually--when my stress levels were down--the bloody poo and stomach pain went away.

So, maybe it's stress related?
posted by misanthropicsarah at 7:17 AM on September 28, 2007

Response by poster: update: I just talked to her, and she said that she's been tested for giardiasis, and the tests showed no conclusive evidence of the parasites.
posted by omnipotentq at 7:33 AM on September 28, 2007

When they tested for mono did they test for cytomegalovirus as well as Epstein-Barr? My boyfriend had cytomegalovirus which gave him both the flu-like symptoms of mononucleosis and an enlarged liver -- i.e. mild hepatitis. The enlarged liver caused bloating and abdominal pain in his case. I believe symptoms of hepatitis can also include headaches and bloating.

See here : "CMV should be suspected if a patient has symptoms of infectious mononucleosis but has negative test results for mononucleosis and Epstein-Barr virus, or if they show signs of hepatitis, but has negative test results for hepatitis A, B, and C."
posted by puffin at 7:37 AM on September 28, 2007

I'm sure it's come up, but are the cycles of pain related to her menstrual cycle? I had similar issues a few years ago and it was directly related to endometriosis and an ovarian cyst. The pain doesn't actually have to be during her period or right before to count, mine actually was always worse during ovulation.

Good luck and I hope she finds a solution soon. Chronic pain is very difficult to deal with, both physically and emotionally.
posted by teleri025 at 7:37 AM on September 28, 2007

Oops, that last sentence of the first paragraph should read "I believe symptons of hepatitis can also include headaches and diarrhea"
posted by puffin at 7:38 AM on September 28, 2007

Has your girlfriend had an ultrasound and/or colonoscopy? These are necessary to diagnose many gastro-intestinal problems, many of which are notoriously difficult to diagnose. Your girlfriend's symptoms sound very similar to the symptoms I had before I was diagnosed with Crohn's disease. Many xrays, examinations, etc came back all clear until a gastroenterologist finally diagnosed through ultrasound (about the third one I had had). I wasn't diagnosed for 6 months after I started having symptoms: apparently the average time between symptoms appearing and a correct diagnosis is 3 years!
posted by Ladysin at 7:42 AM on September 28, 2007

Really, really, really - have her get tested for Celiac Disease.
posted by tristeza at 7:43 AM on September 28, 2007

Response by poster: misanthropicsarah: Thank you for your sympathies. No, no other stresses are going on right now. She's out of school and living at home with her parents still, and she's not working because, well, it's hard to work with this kind of condition where you can barely move around every two weeks. We definitely do think this is stress-related, but pretty much every external source of stress has been removed, so that part is a waiting game for now, I suppose.
posted by omnipotentq at 7:49 AM on September 28, 2007

Has she had a colonoscopy? THat would be need to rule out Ulcerative Colitis or Crohn's disease to which her systems seem significantly similar.
posted by Neiltupper at 7:52 AM on September 28, 2007

What Ladysin says.
posted by Neiltupper at 7:53 AM on September 28, 2007

Response by poster: Thank you all very much. I've passed all of these questions on to her and will update ASAP.
posted by omnipotentq at 7:54 AM on September 28, 2007

that, needed, symptoms. Sorry, still half asleep.
posted by Neiltupper at 7:55 AM on September 28, 2007

What happens if she fasts? If she doesn't eat for a whole day does she feel any better?

Can she go on a short fast with a doctor's supervision to rule out food sensitivities?

What happens when she eats yogurt or acidophilus supplements? Does she feel better?

Has she had her gallbladder tested?
posted by cda at 8:06 AM on September 28, 2007

My first thought was giardia, as well. Anecdotally, I've been told that it can be tricky to get a solid laboratory diagnosis, because the cysts are not shed continuously, so not all fecal samples will test positive. The treatment for giardia is not awful (depending on what country you are in, either a single course of pills, or pills taken over several days; neither with really miserable side effects) so if there is reason to suspect giardia, treating it rather than waiting for positive test results might be a good idea. (IANAD, but I I have had giardia.)
posted by Forktine at 8:11 AM on September 28, 2007

I'm with teleri025. All the symptoms you mentioned can be related to menstrual cycles, which was the first thing that came to mind when you mentioned the two weeks. My timing changed, my symptoms changed, and they got very bad for about a year when I was in my early 20's. I've heard that it's normal to go through hormonal adjustments in that age range.

Has she checked with a gynecologist?
posted by zebra3 at 8:55 AM on September 28, 2007

Response by poster: I've just passed these questions along and should hear back from her soon. Thanks for all the suggestions!
posted by omnipotentq at 9:21 AM on September 28, 2007

Has she been on a course of serious antibiotics since the inception of her symptoms? Which kind? If she's taken a high dose antibiotics that didn't help, then it might rule out those things not immune to that antibiotic...
posted by ewkpates at 9:26 AM on September 28, 2007

Vitamin D for bacteria, Vitamin C for viruses. Assuming she's already taking plenty of both, allergies often develop from travel to far off places. Food alergies are super frustrating. If going off gluten / dairy hasn't helped I'd say put those things back in and start cutting out various fruits & veggies. My cousin is now allergic to apples from traveling in Europe.
posted by TeatimeGrommit at 9:34 AM on September 28, 2007

Response by poster: All: here are her responses to the questions so far:

When they tested you for mono, did they test you for cytomegalovirus as well as epstein-barr?

I have epstein-barr, diagnosed when I was 15. I'm pretty sure, from all that I've read, that EB (which is essentially Chronic Fatigue Syndrome) has a great deal to do with it. But CFS is vague and doesn't have any "cure" according to doctors. I'm pretty sure what I have is a combination of CFS affecting me again (it went away for several years because I was eating so healthy and exercising so much)... thats why I can't get rid of this cold, for example... and some form of parasites inhabiting me (I know I have SOME kind, because they showed up in my blood test)... and all of that contributing to intestinal trouble and giving me IBS. That's my diagnosis. How to fix it, I don't know.

How about crohn's disease? (Did you get a ultrasound and/or colonoscopy?)

All of the doctors have ruled out crohn's disease, based on my symptoms, and that my intestines aren't gushing blood :-p

What happens if she fasts? If she doesn't eat for a whole day does she feel any better?

Generally I faint :-p I don't think eating or not eating seems to make much difference, and I've never really been able to fast a whole day... my blood sugar drops too much.

Can she go on a short fast with a doctor's supervision to rule out food sensitivities?

I've been tested for all food allergies, so I already know which ones affect me a bit and which ones don't. I'm not super allergic to anything.

What happens when she eats yogurt or acidophilus supplements? Does she feel better?

Dairy always makes me feel worse.

Has she had her gallbladder tested?

We ruled that out because the symptoms didn't line up very well.

I'm sure it's come up, but are the cycles of pain related to her menstrual cycle? I had similar issues a few years ago and it was directly related to endometriosis and an ovarian cyst. The pain doesn't actually have to be during her period or right before to count, mine actually was always worse during ovulation.

All of that has been tested and everything is fine there, from what doctors could tell. I don't have pain down there. It's in my intestines, not my ovaries.
posted by omnipotentq at 9:44 AM on September 28, 2007

I could have written the original post, describing my own health. I've been through the wringer with every diagnosis and test possible and we're currently focusing on simply treating the symptoms so I can get out of bed every once in a while.

My email is in my profile if you want to talk more about it offline, now or any time in the future.
posted by foobario at 10:05 AM on September 28, 2007

Sounds awful. I'm so sorry for you.

I also wonder if she shouldn't seen by a real, experienced parasite specialist. If it were me, I'd find the nearest major university medical schools infectious disease clinic and have another go tt this, looking for elevated eosinophils, etc.

This also well be some sort of vague autoimmune syndrome, initiated by god-knows-what in the salmon/rice delicacy of doom. I hope she's had a standard autoimmune panel for lupus, etc. As House says "It's never lupus", but you still may find something.
posted by OlderThanTOS at 10:18 AM on September 28, 2007

Response by poster: foobario: I'm so sorry that you're in the same boat she is, but thank you so much for offering to talk. I've passed your contact info along to her.

OlderThanTOS: It does really stink, especially when we want to get out and do things. Things as simple as just walking outside in the yard aren't possible when she's feeling like this, and it's really frustrating. I've passed along your suggestion to her. I know she went to take a nap just now, so I'll probably hear back from her in a few hours.

To all who've responded so far: Thank you so much for your support and suggestions. I don't know if we'll figure out what it is right now or not, but you all have been awesome. I'm very glad I joined AskMe; you all are very classy and wonderful. I'll keep updating for as long as possible. Please, keep suggestions coming if you have any. We could use all the help we can get....
posted by omnipotentq at 10:25 AM on September 28, 2007

I'm going to second an ovarian cyst and PCOS. Your symptoms sound EXACTLY like mine. I was misdiagnosed for a year with IBS and Pelvic Inflammatory Disease. They did ultrasounds up the wazoo..and said there was nothing wrong. The one day... the worst pain of my life, and off to the ER, where my ovary had burst from an ovarian cyst. Even though they said nothing was wrong with my ovaries about 3x on ultrasounds.

Find thee a good gyno and tell them to double check. My ovary had over 30 cysts when they removed it, none were viable on previous ultrasounds.
posted by Nenna at 11:15 AM on September 28, 2007

posted by Nenna at 11:16 AM on September 28, 2007

All of that has been tested and everything is fine there, from what doctors could tell. I don't have pain down there. It's in my intestines, not my ovaries.

I take it they checked for cysts, endometriosis, etc. Did you discuss the possibility that nausea, fatigue, pain, and gastrointestinal difficulties can be related to your hormonal cycle? IANAD or a parasite expert and do not mean to be pushy, but even if your body is physically in good working order, a two week cycle seems awfully coincidental unless that's what we're talking about.

A gynecologist or an endocrinologist might be able to help on that front.

I also wonder if she shouldn't seen by a real, experienced parasite specialist.

That too. The fact that some tests are coming up negative and some positive is messed up. You guys need to find someone more authoritative and get a solid answer on that.

Good luck.
posted by zebra3 at 11:17 AM on September 28, 2007

Has she been checked for gallstones?
posted by RoseovSharon at 11:46 AM on September 28, 2007

She says gallbladder problems were rulled out because the symptoms didn't line up, but let me tell you this: my moher-in-law had chronic back pains that turned out to be caused by gallbladder stones. My husband had an episode that looked like a heart attack and it was from gallbladder stones. And I had, for almost a year, dull, persistent pain on my left side, (I'd describe it to doctors as being intestinal pain, because that's what it felt like) accompanied by weird fatigue episodes. I'd eat, and ten minutes later I'd be plastered on the couch not wanting to move, barely able to talk straight, feeling so so so tired. Guess what? Gallbladder stones. Had it taken care of (simple surgery, one night at the hospital) and all the symptoms disappeared.

My point is, galbladder stones can cause bizarre symptoms, so I'd recommend talking to a doctor about having an ultrasound to really rule this out. Good luck.
posted by AnyGuelmann at 12:08 PM on September 28, 2007

familial mediterranean fever?

seconding checking her out for lupus, ovarian cysts, endometriosis, and other food intolerances.
posted by thinkingwoman at 12:11 PM on September 28, 2007

Nasuea, fatigue, abdominal pain are also symptoms of Addison's Disease. Although I have to say that when the Spousal Unit got AD the course ran (i.e., got worse) much faster than what you are describing. She went from minor symptoms to requiring assistance to walk from the bed to the bathroom within three months. Can't say if that is typical or not.
posted by trinity8-director at 1:29 PM on September 28, 2007

I had the same symptoms as a child, on and off for several years, and it turned out to be giardiasis, as cocoagirl referred to. Interestingly enough, I contracted the parasite through water in a lake in Canada.
posted by messylissa at 1:34 PM on September 28, 2007

My point is, galbladder stones can cause bizarre symptoms, so I'd recommend talking to a doctor about having an ultrasound to really rule this out. Good luck.

Yeah, that's why I suggested it. I was getting sick for a very long time with similar symptoms to what the poster described, and it kept getting diagnosed as the flu or food poisoning or IBS. After years of suffering this way thinking that I was awfully sensitive to food borne illnesses, an astute nurse finally opted to try an ultrasound to check for stones. Sure enough my gallbladder was diseased and literally ready to burst with stones. After I had the surgery all the mysterious symptoms and repeated bouts of food poisoning and off season flu went away, never to return.

Don't let them rule it out before they actually take a look to see for sure. It can't hurt anything to get the ultrasound just to know for certain.
posted by RoseovSharon at 1:36 PM on September 28, 2007

Has she been tested for lyme disease? The abdominal pain symptoms aren't a match, but the rest of it matches up.

You mentioned she has been tested for parasites. How many of them?

Has she tried an infectious disease doctor? They have experience diagnosing unusual conditions.
posted by bh at 4:03 PM on September 28, 2007

You know, I generally am more comfortable than most people when it comes to weighing in and providing medical context and general advice on the internet. I do it here with some regularity.

That said, this AskMe is starting to make me feel queasy with the information that's being provided. This is not an episode of House online. The people here are in no position to throw out random diagnoses, and I do question whether you're doing your lady friend a service in the long run by taking this route. As you have noted, she has already seen more doctors than should be legal and had what sounds like a large battery of tests. This is precisely the circumstance NOT well suited to Joe Bystandard weighing in based on the fact that they too happened to have a set of vague constitutional symptoms that could be due to anything but turned out to be X, Y, or Z.

If you haven't done so, this is the point where you might consider taking her to a dedicated tertiary academic center where she might benefit from seeing a gastroenterologist who specializes in neurovisceral and functional diseases as well as perhaps a rheumatologist with a similar bent.
posted by drpynchon at 6:08 PM on September 28, 2007


You are correct. Most of us do not have the necessary qualifications to even guess at a diagnosis in this case, or in any other case. Without test results, we are shooting blind.

But this posting seems like a last-ditch effort at brainstorming. To find out what could possibly be causing these symptoms, and to not discount anything.

Because sometimes doctors miss things.

Despite all of the good intentions, nobody knows everything. Even doctors. Some small abnormality might turn out to be the key to unlocking this problem, and someone here might recognize that abnormality for what it is.

I threw out something that is very unlikely, but I did so because it might help raise awareness of unlikely conditions, and that it might help someone that runs into this thread in the future.

It is hard to describe the terrible feeling that overwhelms you when you see doctor after doctor, only to be told that nothing is wrong with you. As well intentioned as they may be, most doctors are not expert diagnosticians. Even the best might miss something that would seem obvious to someone that has suffered through the same and managed to put a name to it.

I am still alive today because of the internet. Ten years ago, when there was no ask.mefi, I had to diagnose myself. It took months. During those months, my condition worsened. Once I had the diagnosis, and the tests to back it up, it still took months to get the proper treatment. Again, it was the internet that pointed me in the right direction. One appointment with a knowledgeable doctor was all it took. I was recovering six weeks later.

But I would have never found that doctor, nor would I have ever guessed at the problem, were it not for questions just like this.

So I would like to thank you for pointing omnipotentq in the right direction. Your responses, and those from ikkyu2 and docpops are a great service to this community.

But please realize that although most of the answers provided will prove incorrect, they might help someone.
posted by bh at 2:32 AM on September 29, 2007

My first thought was along the lines of what Roofus mentioned.

The mind is a powerful thing.
posted by mu~ha~ha~ha~har at 5:57 AM on September 29, 2007

bh, you make excellent points, and by no means do I wish to suggest that doctors may not miss things. But besides the training, the other advantage a professional has in this scenario is that they can actually evaluate the results of what may be a large number of diagnostic studies that have already been done. We (you, me, and everyone else here) don't have that luxury. Recommending a possible diagnosis right now has the potential of casting doubt in the posters mind when perhaps a more than adequate evaluation has already been performed.

Moreover, a diagnostic evaluation in and of itself isn't harmless. For example, some have recommended the possibility of endometriosis. There may already be enough reason to think this isn't the problem (again, we can't really say for sure), however if you push the wrong doctor hard enough about such a diagnosis when you don't have it, what you're going to end up with is an exploratory surgery that might well kill you.

Just keep this in mind. I don't want to make it seem like doctors are the keepers of some secret voodoo knowledge. But we do have a lot of exposure to cases like these, and my estimation is that if a friend of mine mentioned something like this to me, personally over dinner or something, I would still not be inclined to start head-scratching too much at what is going on as it may in fact be counterproductive. This is why I would try to point someone towards an expert that they can trust. This becomes even more relevant once IBS is thrown around, and even moreso, when the poster dismisses the possibility of it.
posted by drpynchon at 7:28 AM on September 29, 2007 [2 favorites]

I would look into Giardiasis ("beaver fever") as well. A friend of mine got in a few years ago, and the symptoms sound just like what you described (Of course, check with a doctor). If that is what it is, it is easy enough to treat.

If your friend went camping and drank untreated water (that is what happened to my buddy), that would be a possible source of giardiasis.

Hope she gets better soon.
posted by TheyCallItPeace at 1:09 PM on September 29, 2007

drpynchon - Very good point about introducing bias. You would think I would have figured out by now that people don't always act rationally and make informed decisions. Especially because I see people acting irrationally every damn day.
posted by bh at 4:21 PM on September 29, 2007

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