Discussions By Condition: I cannot get a diagnosis.

Help! 1 year of fatigue, GI symptoms, low grade fever...

Posted In: I cannot get a diagnosis. 14 Replies
  • Posted By: karibou
  • November 18, 2008
  • 06:29 PM

I am absolutely at my wits' end and could use some advice and support. I am a 34-year old woman who has always been thin and somewhat "frail" of constitution. I've suffered from irritable bowel and endometriosis since puberty, but I've recently had a shift in my symptoms that is both worrisome and affecting my ability to function.

About 3 years ago, my irritable bowel symptoms began shifting to include severe, acute nausea with my lower GI symptoms, especially after eating. At that time, I had a complete GI workup done -- colonoscopy, barium swallow, the works. All normal. I was told to eat more fiber and essentially ignored by my GI doctor from that point on.

Last year, I began suffering from horrible, mind-numbing, chronic fatigue on a regular basis. The fatigue was often accompanied by bouts of lightheadedness upon standing (orthostatic hypotension), and breathlessness. I quickly realized that these symptoms were most acute with the hour or two before I had an attack of irritable bowel, and that eating would trigger the awful GI symptoms. I went to my doctor for a complete workup. My doctor is a very thorough diagnostician and I had a SLEW of tests done. They found no thyroid issues, no anemia, no increased white blood cell count. An echocardiogram showed minor changes to my aortic valve (which has always had a tiny bit of regurgitation), but nothing "clinically significant." The only thing the doctor did note was that I was running a low-grade fever. Since then, I've monitored my temperature daily. It is never below 99.4 and never above 100.1.

I found a new gastroenterologist, thinking it must be tied to my IBS. He tested my stool to make sure I was absorbing fats, which came back normal. He suggested fiber. Go figure.

I saw my OBGYN, after my primary care doctor suggested that inflammation due to endometriosis could be causing all of my issues. I had laproscopic surgery in June, which did ablate a significant amount of endometriosis, but (other than damaging the nerve to my right thigh, which is now excruciatingly painful) did nothing for my symptoms.

I was referred to an infectious disease specialist. The receptionist didn't seem interested when I explained my symptoms, and without the diagnosis of an actual infectious disease, wouldn't even schedule an apointment until I had my records transferred. They said they'd send me the records request form. They didn't. I called back. Twice. And never received the form. I then gave up. If they couldn't be motivated to send me a frigging FORM, they probably weren't going to look very hard for the cause of my symptoms.

I have coped by slowly cutting back on EVERYTHING. I don't eat at work because I'm a teacher and can't take the chance that eating will trigger a GI meltdown while I'm lecturing. I never sleep, because by the time I get home from work, I'm STARVING, which means I eat a LOT -- which, inevitably triggers GI symptoms that keep me up all night. One bout of any common illness (which as a teacher with small children at home is inevitable) sends me into absolute chaos. I've lost weight that I can't afford to lose. I spend my spare time collapsed in a heap on my sofa because I'm too tired to move.

I'm SO tired of doctors looking at my enormous stack of NORMAL test results and deciding that I'm just nuts. I'm not crazy. I'm not imagining the constant nausea and alternating bouts of loose bowels and constipation. I'm not imagining the fact that I get so winded from standing at a chalk board while speaking that I have to stop to catch my breath. I'm certainly not imagining the fever. How on EARTH can an entire group of intelligent professionals look at me and simply shrug their shoulders?

Anyway, whether I get help here or not, I really, really needed to let that all out.

Thanks,
Kari

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14 Replies:

  • you really need to try some probiotics which are good bacteria that can help with digestion (can cure IBS) and help with fatigue and neurological symptoms also (because 70% of the immune system is in the gut and also because they treat intestinal hyperpermeability aka "leaky gut" syndrome)I recommend you try VSL #3 which you can by online direct from the manufacturer. It contains 450 billion CFU of probitocs, far more than any other and has been proven effective in scientific studies.
    stanleybrown 29 Replies
    • November 24, 2008
    • 05:50 PM
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  • Get checked for celiac disease and possibly lactose intolerance.
    aquila 1263 Replies
    • November 24, 2008
    • 06:32 PM
    • 0
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  • Great minds think alike, I guess... I've been on probiotics for years, both supplemental and dietary. It used to help... not so much anymore. Still, I'll check out the brand you recommended.No celiac. They did an endoscopy and biopsy 2 years ago when I had my complete GI workup. I even went gluten-free earlier this year for two months. (My autistic son is on a gluten-free diet, so it wasn't difficult for me to eat what he eats.) Didn't do a darn thing, I'm afraid.No lactose intolerance, either. I've been tested AND tried avoidance (same month I did gluten-free, I did dairy free, too.) No luck there, either. Besides, lactose intolerance doesn't explain the fever.I've been most recently tested for epstein-barr and had my 5-hiaa levels checked, presumably to rule out carcinoids. Waiting on results for both.Thanks for the suggestions!
    karibou 6 Replies
    • November 25, 2008
    • 00:39 AM
    • 0
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  • HHV-6 is a virus being studied for a possible role in chronic fatigue and low grade fever. High HHV-6 IgG titers may indicate an active infection. You might want to look up fructose intolerance although it would only explain symptoms after eating food with sugar in it.
    stanleybrown 29 Replies
    • November 28, 2008
    • 09:00 PM
    • 0
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  • darn i lost my post.. so will redo it. Thou you are still working.. It is possible you have slow onset chronic fatigue immunity dysfunction syndrome developing ..CFIDS developing with the symptoms you have.. esp now you are running low grade fevers and with the orthostatic intollerance. All this makes it seem you could have just the one big complex issue going on so my thought of maybe something like CFIDS http://wwcoco.com/cfids/bernesx.html which affects so many different areas of the body in different ways. but be aware that possibly that any one of the issues i mention here may be a factor in your case even if you dont have CFIDS The fatigue was often accompanied by bouts of lightheadedness upon standing (orthostatic hypotension), and breathlessness." Is your BP generally low?? most with CFIDS have low BP. Orthostatic intollerance and issues are very common in CFIDS too (regardless of the BP). Has postural orthostatic taccycardia (POTS) been ruled out in yoru case???? This can cause your symptoms in the quotes and you could have it as well as the orthostatic hypotension. http://en.wikipedia.org/wiki/Postural_orthostatic_tachycardia_syndrome Ones with POTS often have coexisting conditions eg orthostatic hypotension, IBS, CFIDS etc im going to theorise in this paragraph why your standing issue is worst after eatting...it takes energy to be digesting food .. so if you have something like CFIDS, your symptoms could well be worst after eatting as your body is using more energy to digest. (many with CFIDS feel better some when they dont eat). People with CFIDs often have food intollerances too.. so hence symptoms can become worst after eatting (this isnt a theory). The fact that your son has autism...there may be a connection there with your current illness. Some are having success at treating autism as a problem with the bodies methylation cycle and hence by finding the issue and treating it.. some with autism are improving a LOT. What really interests me about your son having this and your symptoms.. is that one of the CFIDS theories being currently studied is that with it too there are issues in the methylation cycle. Some doctors are helping thier CFIDS patients by indentifying the methylation cycle issue (in my own case it's a MTHFR polymorphism i have, a genetic issue with methylation cycle.. i have CFIDS) and treating this along with the many other issues CFIDS patients have. .......So my suggestions are look into POTS, look into food intollances.. look into CFIDS esp if your symptoms expand further and get even worst... and you may want to also look into methylation issues (the following is an article which talks about this, autism and CFIDS) http://www.nutritional-healing.com.au/content/articles-content.php?heading=Autism%20treatments%20show%20promise%20in%20Chronic%20Fatigue%20Syndrome
    taniaaust1 2267 Replies
    • November 29, 2008
    • 05:02 AM
    • 0
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  • Wow. Thank you for your very thorough reply.Your links were very eye-opening. I seem to have 90% of the symptoms listed there! I think you have the right idea -- in fact, I just received news from my doctor that my EB viral titer was very high. I had a nasty flu-like illness (which eventually morphed into pneumonia) two years ago, just before my symptoms began worsening. He suggested that I may have had full-blown mono back when this all began, and also suggested a diagnosis of EBV. He is having me see an infectious disease specialist. I know that EBV is often linked to chronic fatigue... so you may be onto something.I do have naturally low blood pressure, and have seen a cardiologist for the syncope issues. However, since my cardiologist treated me a few years ago for a congenital defect (Wolf-Parkinson-White syndrome), she wasn't especially interested in my symptoms, except to rule out a recurrence of the WPW. She told me to wear SUPPORT HOSE for the orthostatic issues. I suspect I *do* have some degree of POTS, but nobody seems very concerned about it.I will spend some time reading over the information you provided, and will go to my specialist armed with some knowledge of the condition. I'm especially interested in the links to autism! I didn't notice any change when I was on a gluten-free diet, but if there is some way to quantify the food sensitivities you mentioned, I would be very interested in doing so
    karibou 6 Replies
    • November 29, 2008
    • 03:28 PM
    • 0
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  • Wow. Thank you for your very thorough reply. Your links were very eye-opening. I seem to have 90% of the symptoms listed there! I think you have the right idea -- in fact, I just received news from my doctor that my EB viral titer was very high. I had a nasty flu-like illness (which eventually morphed into pneumonia) two years ago, just before my symptoms began worsening. He suggested that I may have had full-blown mono back when this all began, and also suggested a diagnosis of EBV. He is having me see an infectious disease specialist. I know that EBV is often linked to chronic fatigue... Studies have shown that the worst one had EBV the more likely one is to end up with CFIDS. Also studies show that 10% of those who get full blown EBV (mono) will end up with CFIDS. (This 10% link is also triggered by other illnesses too so it isnt specifically EBV which can trigger off CFIDS). I suspect I *do* have some degree of POTS, but nobody seems very concerned about it. POTS itself can be a quite diabilitating illness. I have POTS and have gone unconscious up to 5 mins from it.... if im forced by a situation to stay upright. Unfortunately 95% of doctors are naive when it comes to POTS as they know very little about it. I suggest if you have to you can even test for it yourself with a BP monitor which takes heart rate too. The best time for it to show up is in the morning. Take your heart rate while in bed before you get up.. then stand up .. take it at one min.. then at five minutes (while still standing there still). If it's gone up over 30 beats on standing and remained there or is up over 100 beats per minute.. it shows POTS. (i suggest to take it on several mornings to rule this out or an added issue). but if there is some way to quantify the food sensitivities you mentioned, I would be very interested in doing so Most doctors unfortunately are not aware that food sensitivties cause a lot of us issues.. as they tend to focus on food allergies which cause a different immune response in the body to which food sensitivites do. Food sensitivities can be tested thou and are by some labs (a certain kind of blood test.. not the common allergy one). But i myself have worked out mine just by trial and error over time. Some remove nearly everything from their diet and then just introduce ONE food back a day.. to guage if they get a reaction. Be aware that food sensitivities may not cause immediate reactions like food allergies do and hence one may even be reacting up to 24 hrs later and in various ways. i get headache from milk, just feel tired from other things.. and some things give me tummy symptoms eg peanuts Food sensitivity may be caused by the amount of a certain food too or certain food combinations.. If you do have CFIDs.. lactose, gluten and fructose.. may esp be issues.
    taniaaust1 2267 Replies
    • November 30, 2008
    • 01:05 AM
    • 0
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  • Food sensitivities are tested by checking IgG antibodies in the blood for each food. For gluten, they check IgG antibodies to wheat although you can also ask for antigliadin antibodies (gluten and gliadin are related) if you just want to be checked for gluten.For food allergies, IgE antibodies can be checked but a skin scratch test is usually used for allergies.The HHV-6 virus I mentioned is similar to EBV and some researchers think it causes CFIDS. Many people with CFIDS have high titers to EBV and HHV-6.
    stanleybrown 29 Replies
    • November 30, 2008
    • 02:05 AM
    • 0
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  • If you want info on HHV-6 connection to CFIDS and autism, here's a good site - http://hhv6.jottit.com/
    stanleybrown 29 Replies
    • November 30, 2008
    • 02:09 AM
    • 0
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  • I was teaching and had almost the same exact symptoms! Except my colon issues were diagnosed as ulcerative colitis. The symptoms got worse the longer i taught and i eventually went out on disability. My issues started with black toxic mold in my building. They found that my Igg blood was very low - i continue to get many bacterial and viral infections. - Have your Igg checked and you B and T cells. I went to a rheumatologist who has treated the low grade fevers with a drug called Plaquenil, it's an antimalaria drug - it has helped to get my temps down to 98.4 most of the time -not if im stressed or my period is coming or if i have an infection. Also get your CRP - creatine reactive protein level checked for inflammation levels. This could be a sign of a developing auto-immune disease. My colitis is treated with Lialda - don't know if that will help you. Also try acidolphilus and active yogurt cultures - they help me. -Acidolphilus is best bought cold in refridgerators found in Health Food Stores. I hope this helps I totally know what you are going through. Feel free to e-mail me at lssaja@aol.com. Put something in subject heading so i don't delete as junk mail. God Bless you - I will pray for your health to improve! -- Sincerely, Laura
    lssaja 1 Replies
    • August 18, 2009
    • 04:31 PM
    • 0
    Flag this Response
  • I am absolutely at my wits' end and could use some advice and support. I am a 34-year old woman who has always been thin and somewhat "frail" of constitution. I've suffered from irritable bowel and endometriosis since puberty, but I've recently had a shift in my symptoms that is both worrisome and affecting my ability to function. About 3 years ago, my irritable bowel symptoms began shifting to include severe, acute nausea with my lower GI symptoms, especially after eating. At that time, I had a complete GI workup done -- colonoscopy, barium swallow, the works. All normal. I was told to eat more fiber and essentially ignored by my GI doctor from that point on. Last year, I began suffering from horrible, mind-numbing, chronic fatigue on a regular basis. The fatigue was often accompanied by bouts of lightheadedness upon standing (orthostatic hypotension), and breathlessness. I quickly realized that these symptoms were most acute with the hour or two before I had an attack of irritable bowel, and that eating would trigger the awful GI symptoms. I went to my doctor for a complete workup. My doctor is a very thorough diagnostician and I had a SLEW of tests done. They found no thyroid issues, no anemia, no increased white blood cell count. An echocardiogram showed minor changes to my aortic valve (which has always had a tiny bit of regurgitation), but nothing "clinically significant." The only thing the doctor did note was that I was running a low-grade fever. Since then, I've monitored my temperature daily. It is never below 99.4 and never above 100.1. I found a new gastroenterologist, thinking it must be tied to my IBS. He tested my stool to make sure I was absorbing fats, which came back normal. He suggested fiber. Go figure. I saw my OBGYN, after my primary care doctor suggested that inflammation due to endometriosis could be causing all of my issues. I had laproscopic surgery in June, which did ablate a significant amount of endometriosis, but (other than damaging the nerve to my right thigh, which is now excruciatingly painful) did nothing for my symptoms. I was referred to an infectious disease specialist. The receptionist didn't seem interested when I explained my symptoms, and without the diagnosis of an actual infectious disease, wouldn't even schedule an apointment until I had my records transferred. They said they'd send me the records request form. They didn't. I called back. Twice. And never received the form. I then gave up. If they couldn't be motivated to send me a frigging FORM, they probably weren't going to look very hard for the cause of my symptoms. I have coped by slowly cutting back on EVERYTHING. I don't eat at work because I'm a teacher and can't take the chance that eating will trigger a GI meltdown while I'm lecturing. I never sleep, because by the time I get home from work, I'm STARVING, which means I eat a LOT -- which, inevitably triggers GI symptoms that keep me up all night. One bout of any common illness (which as a teacher with small children at home is inevitable) sends me into absolute chaos. I've lost weight that I can't afford to lose. I spend my spare time collapsed in a heap on my sofa because I'm too tired to move. I'm SO tired of doctors looking at my enormous stack of NORMAL test results and deciding that I'm just nuts. I'm not crazy. I'm not imagining the constant nausea and alternating bouts of loose bowels and constipation. I'm not imagining the fact that I get so winded from standing at a chalk board while speaking that I have to stop to catch my breath. I'm certainly not imagining the fever. How on EARTH can an entire group of intelligent professionals look at me and simply shrug their shoulders? Anyway, whether I get help here or not, I really, really needed to let that all out. Thanks,KariHi Kari,I just saw this post and I feel for you I have been in the same boat for 21 years...they cant figure out what is wrong ...recently I have i have had a low grade fever and the most severe fatigue you can imagine. I did want to share with you I went to a medical nutritionist and she did a bunch of testing...hormonal, vitamin and food sensitivity...i have about 28 foods i need to steer clear of and although it has not cured me by any stretch my IBS symptoms had greatly improved. I am not afraid to eat anymore during the day for fear of an attach. When I cheat and eat things i should i am right back in the bathroom :(Hope that is helpfulGina
    Anonymous 42789 Replies
    • December 2, 2009
    • 02:26 AM
    • 0
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  • I am absolutely at my wits' end and could use some advice and support. I am a 34-year old woman who has always been thin and somewhat "frail" of constitution. I've suffered from irritable bowel and endometriosis since puberty, but I've recently had a shift in my symptoms that is both worrisome and affecting my ability to function. About 3 years ago, my irritable bowel symptoms began shifting to include severe, acute nausea with my lower GI symptoms, especially after eating. At that time, I had a complete GI workup done -- colonoscopy, barium swallow, the works. All normal. I was told to eat more fiber and essentially ignored by my GI doctor from that point on. Last year, I began suffering from horrible, mind-numbing, chronic fatigue on a regular basis. The fatigue was often accompanied by bouts of lightheadedness upon standing (orthostatic hypotension), and breathlessness. I quickly realized that these symptoms were most acute with the hour or two before I had an attack of irritable bowel, and that eating would trigger the awful GI symptoms. I went to my doctor for a complete workup. My doctor is a very thorough diagnostician and I had a SLEW of tests done. They found no thyroid issues, no anemia, no increased white blood cell count. An echocardiogram showed minor changes to my aortic valve (which has always had a tiny bit of regurgitation), but nothing "clinically significant." The only thing the doctor did note was that I was running a low-grade fever. Since then, I've monitored my temperature daily. It is never below 99.4 and never above 100.1. I found a new gastroenterologist, thinking it must be tied to my IBS. He tested my stool to make sure I was absorbing fats, which came back normal. He suggested fiber. Go figure. I saw my OBGYN, after my primary care doctor suggested that inflammation due to endometriosis could be causing all of my issues. I had laproscopic surgery in June, which did ablate a significant amount of endometriosis, but (other than damaging the nerve to my right thigh, which is now excruciatingly painful) did nothing for my symptoms. I was referred to an infectious disease specialist. The receptionist didn't seem interested when I explained my symptoms, and without the diagnosis of an actual infectious disease, wouldn't even schedule an apointment until I had my records transferred. They said they'd send me the records request form. They didn't. I called back. Twice. And never received the form. I then gave up. If they couldn't be motivated to send me a frigging FORM, they probably weren't going to look very hard for the cause of my symptoms. I have coped by slowly cutting back on EVERYTHING. I don't eat at work because I'm a teacher and can't take the chance that eating will trigger a GI meltdown while I'm lecturing. I never sleep, because by the time I get home from work, I'm STARVING, which means I eat a LOT -- which, inevitably triggers GI symptoms that keep me up all night. One bout of any common illness (which as a teacher with small children at home is inevitable) sends me into absolute chaos. I've lost weight that I can't afford to lose. I spend my spare time collapsed in a heap on my sofa because I'm too tired to move. I'm SO tired of doctors looking at my enormous stack of NORMAL test results and deciding that I'm just nuts. I'm not crazy. I'm not imagining the constant nausea and alternating bouts of loose bowels and constipation. I'm not imagining the fact that I get so winded from standing at a chalk board while speaking that I have to stop to catch my breath. I'm certainly not imagining the fever. How on EARTH can an entire group of intelligent professionals look at me and simply shrug their shoulders? Anyway, whether I get help here or not, I really, really needed to let that all out. Thanks,KariHi I wish that I could somehow get intouch with Kari. I have the same exact symptoms going on. I am wondering how she is today. Her note was dated 2008 and it's 2010my name is Michelle my e-mail is babebeee@aol.com
    Anonymous 42789 Replies Flag this Response
  • Have you ever checked into Sodium Nitrite allergy. With it I was sick, with hot flashes, weakness and low grade fever - Never usually more than 99.6. The doctors said it couldn't be an allergy with a fever but after a while I heard some say, that a fever caused by irritation is possible (look at babies with teething). Anyway, after cutting everything from my diet I had a hot dog and away I was again. As long as I stay clear I'm fine, and when I have a reaction like this I look at my diet (which I keep very far away from Nitrites) and often there has been cross contamination at a restaurant...NITRITES ARE EVERYWHERE. Anyway, sounds like you already had great feedback but on the small chance that you could be the same as me, I thought I'd put in my two cents worth. It took me a couple of years to figure out on my own! Hope youa re well soon! Sorry, just in case you are wondering there is supposedly no test in N. America for Nitrite allergy but trial diet without and reintroduce and you'll see what happens.
    Anonymous 42789 Replies Flag this Response
  • Do you have a root canal? Go to a thermography clinic asap and have a dental scan....then get that root canal removed by an oral surgeon that understands cavitations...
    Anonymous 1 Replies Flag this Response
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