Hi,
I was curious if any of you got pretty bad fatigue about the time you got IBS?
Hi Cathy, Good question. At the time I got IBS, I was fatigued but not sure if it was because I was up all night on the toilet every night. I don't think it would be fair for me to answer this one since now I have a couple of autoimmune problems thrown in the mix but I am very curious as to what others say. :)
Hugs, Des
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Hmm, I don't know if I technically have IBS or not, but when my stomach starts acting up, yes, I get fatigued. I just don't want to do anything but sit and read or lay in bed. Even after I get it settled down I'm not much use for the rest of the day.
Fatigue is one of those vague, subjective symptoms that's really hard to define, and in this day in age, most people could easily call themselves fatigued on occasion. Pain or constant diarrhea can leave people feeling wiped out; so in that way, I suppose it can be a nuisance side effect.
Way back when(2001) I was diagnosed with IBS. I started developing fatigue at the same time. Then I started getting a UTI every few months. I also started getting aches in my muscles and joints. They would come and go--not a constant thing, so I thought it was from working out too hard or from being out of shape or something. Then I started getting migraine headaches every few months and I developed a constant "brain fog". Finally just this year I was diagnosed with Lyme Disease.
I'm not saying that your fatigue is from Lyme Disease, since it could be a number of other things. It's just interesting that I was diagnosed with IBS, and now I realize that it was just a symptom of the larger disease of Lyme. I hope you tell your doctor of the fatigue. There is a difference between feeling tired and fatigue. Fatigue is having to drink a pot of coffee after work so that you will have the energy to make dinner, eat dinner, and possibly stay awake until 8pm or 9pm max.. There is something wrong with fatigue and it isn't difficult to define, at least not in my case.
Thanks everyone,
I've been tested alot for Lyme, and it's all been negative. I know that some people believe in having Lyme with negative tests, but I've decided to believe that I don't have it.
I have fibromyalgia.......whatever that is. All this started up after I had a horrible bout of influenza and pneumonia and ear infections in l995. I was on antibiotics for 2 months, and that's when alot of this stuff started up. Unfortunately, I was also going through perimenopause too. There are times when I wonder about yeast-overgrowth.....but probiotics don't seem to help.
Since I've had IBS though, I'm so aware of how our GI tracts are connected to our brains. I know they secrete neurochemicals too, and are referred to as our "second brains". I just have been wondering how much this fatigue is connected to my GI problems........but like several of you have said, there are a bunch of reasons I might have it.
It's sure no fun. Last year I finally had consistent energy, and I was sure it was because my periods were finally over, and maybe I wasn't getting those hormone fluctuations..........but it came back last fall. Darn. What's curious though is that I had to take Cleocin for Hairy Tongue last fall. It seems like every time I take an antibiotic, I lose more and more GI function. That sure sounds like something like yeast, doesn't it? But very few docs believe in yeast overload.
Thanks for your replies.
I've been tested alot for Lyme, and it's all been negative. I know that some people believe in having Lyme with negative tests, but I've decided to believe that I don't have it.
I have fibromyalgia.......whatever that is. All this started up after I had a horrible bout of influenza and pneumonia and ear infections in l995. I was on antibiotics for 2 months, and that's when alot of this stuff started up. Unfortunately, I was also going through perimenopause too. There are times when I wonder about yeast-overgrowth.....but probiotics don't seem to help.
Since I've had IBS though, I'm so aware of how our GI tracts are connected to our brains. I know they secrete neurochemicals too, and are referred to as our "second brains". I just have been wondering how much this fatigue is connected to my GI problems........but like several of you have said, there are a bunch of reasons I might have it.
It's sure no fun. Last year I finally had consistent energy, and I was sure it was because my periods were finally over, and maybe I wasn't getting those hormone fluctuations..........but it came back last fall. Darn. What's curious though is that I had to take Cleocin for Hairy Tongue last fall. It seems like every time I take an antibiotic, I lose more and more GI function. That sure sounds like something like yeast, doesn't it? But very few docs believe in yeast overload.
Thanks for your replies.
alliebridge said...
Way back when(2001) I was diagnosed with IBS. I started developing fatigue at the same time. Then I started getting a UTI every few months. I also started getting aches in my muscles and joints. They would come and go--not a constant thing, so I thought it was from working out too hard or from being out of shape or something. Then I started getting migraine headaches every few months and I developed a constant "brain fog". Finally just this year I was diagnosed with Lyme Disease.
I'm not saying that your fatigue is from Lyme Disease, since it could be a number of other things. It's just interesting that I was diagnosed with IBS, and now I realize that it was just a symptom of the larger disease of Lyme. I hope you tell your doctor of the fatigue. There is a difference between feeling tired and fatigue. Fatigue is having to drink a pot of coffee after work so that you will have the energy to make dinner, eat dinner, and possibly stay awake until 8pm or 9pm max.. There is something wrong with fatigue and it isn't difficult to define, at least not in my case.
My4,
My positive result came from IGeneX, Inc. in Palo Alto, CA. My doctor was certain I had lyme disease even before the positive test result came back, just from all of my symptoms.
Cathy A,
Being on antibiotics definitely throws off the flora in the intestines. Since I am on longterm antibiotic therapy to treat the lyme disease, I take a probiotic called PB8. I buy it from vitamin shoppe online. It works great. As long as I stick to a sugar-free and wheat-free diet, I don't get any yeast problems.
Also, I read on the lyme board that a prominent U.S. Lyme Disease doctor believes that the majority of patients with a fibromyalgia diagnosis actually have lyme disease. If I were you I wouldn't rule it out. I am not an outdoorsy person, have lived in cities my whole life and have never even been camping and I have it.
No offense alliebridge, but I think anybody who sends a sample to IGeneX, gets a positive result.
There are only a few labs that Lyme docs use, and I'd really like to see the percentage of positives that they have. I just wish they would develop more reliable testing for it, so that everyone, no matter what lab they used, could feel that they could trust the results.
I spent several years sorting this out, and am pretty certain I don't have Lyme. I think many of us have very similar symptoms, but it's not all from the same illness. Good luck to you.
There are only a few labs that Lyme docs use, and I'd really like to see the percentage of positives that they have. I just wish they would develop more reliable testing for it, so that everyone, no matter what lab they used, could feel that they could trust the results.
I spent several years sorting this out, and am pretty certain I don't have Lyme. I think many of us have very similar symptoms, but it's not all from the same illness. Good luck to you.
My doctor must be wrong then. I guess I must have fibromyalgia. I'll stop my meds right away doctor.
Please lets not make this topic personal. The problem with most illnesses is that they do overlap symptoms, I have that problem with my IBS/UC, or that symptoms from different disorders and diseases mimic each other. I understand the frustration when you are dealing with a chronic illness however please remember that we are all suffering. Please do not attack other members.
-Thank you
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Hugs, Des
Co-Moderator ~ IBS Forum
~My reality check bounced
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Dx: IBS 1989, Diverticulosis 2004, UC 2005, Sjogren's 2006
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CathyA said...
No offense alliebridge, but I think anybody who sends a sample to IGeneX, gets a positive result.
There are only a few labs that Lyme docs use, and I'd really like to see the percentage of positives that they have. I just wish they would develop more reliable testing for it, so that everyone, no matter what lab they used, could feel that they could trust the results.
I spent several years sorting this out, and am pretty certain I don't have Lyme. I think many of us have very similar symptoms, but it's not all from the same illness. Good luck to you.
No offense alliebridge, but I think anybody who sends a sample to IGeneX, gets a positive result.
There are only a few labs that Lyme docs use, and I'd really like to see the percentage of positives that they have. I just wish they would develop more reliable testing for it, so that everyone, no matter what lab they used, could feel that they could trust the results.
I spent several years sorting this out, and am pretty certain I don't have Lyme. I think many of us have very similar symptoms, but it's not all from the same illness. Good luck to you.
Hi my4bostons,
Did they treat you for the rash? I think I would freak out if I had that bullseye rash. From what I've seen, you need to receive the antibiotic ASAP after the beginning of that rash, or it's really hard to control.
I think some doctors don't respond enough to Lyme, and others ("LLMDs") over-respond to it.....making up the treatment as they go. I think conventional docs should be more open to more possibilities, and alternative docs should be more aware of the scientific studies and results that are out there.
With all the advances in medicine today, you would think that they could develop a reliable test for it.
Des is right.......there are a bunch of illnesses that have overlapping symptoms. But my4bostons......I surely hope they treated your bullseye rash with at least a month of Doxycycline.
Sorting through the various doctors and their various treatments can be very difficult. I had a friend who had similar symptoms as mine, and she travelled great distances to go to a "Lyme specialist", and was on heavy duty antibiotics for several years, and unbelieveable amounts of vitamins, supplements, etc., and just when he was getting ready to treat her "low thyroid" (which was normal on the lab test), she decided to stop going to him. I think some doctors can become very unethical when it comes to treating some of these "difficult-to-test-for" conditions.
I hope you can find something to help you feel better.
Did they treat you for the rash? I think I would freak out if I had that bullseye rash. From what I've seen, you need to receive the antibiotic ASAP after the beginning of that rash, or it's really hard to control.
I think some doctors don't respond enough to Lyme, and others ("LLMDs") over-respond to it.....making up the treatment as they go. I think conventional docs should be more open to more possibilities, and alternative docs should be more aware of the scientific studies and results that are out there.
With all the advances in medicine today, you would think that they could develop a reliable test for it.
Des is right.......there are a bunch of illnesses that have overlapping symptoms. But my4bostons......I surely hope they treated your bullseye rash with at least a month of Doxycycline.
Sorting through the various doctors and their various treatments can be very difficult. I had a friend who had similar symptoms as mine, and she travelled great distances to go to a "Lyme specialist", and was on heavy duty antibiotics for several years, and unbelieveable amounts of vitamins, supplements, etc., and just when he was getting ready to treat her "low thyroid" (which was normal on the lab test), she decided to stop going to him. I think some doctors can become very unethical when it comes to treating some of these "difficult-to-test-for" conditions.
I hope you can find something to help you feel better.
Hi CathyA, Well the rash happened about 12 years ago when I had no clue what it was. I had a dark spot with a circle rash on my foot. I did not seek treatment for it as it went away. about a month later I had extreme fatique,fever,aches etc. My mom took me to an ER were I recieved antibiotics for mono. I only recieved a weeks worth and being a 20 yrs old I never finished meds. Well proceed a few years and I was getting sever headaches after moving south. I went to a Dr and told them I feel as though I may have Lyme(I saw a girl on Real World that had lyme and it made me wonder) He proceeded to laugh and say as long as I had atleast a weeks worth of antibiotics I am fine. Needless to say I feel worse and worse every week. I have not gone to get a test yet. My MD gave me the paperwork to get it done but after reading everything on Lyme testing at lab corp I dont feel like I should waste my money. Im being told that it is just IBS. I dont have insurance and am very unsure as what to do. Im sorry this is so long but I figure the more I tell my story maybe the more info and Insite I can get from others.
I agree with Cathy about getting it checked out anyway... also there is a Lyme forum on this site which I'm sure if you asked about the testing process, you will get lots of information. Everything that I have heard about bullseye rashes points to Lyme. I hope its not however the sooner you get treatment (goes for anything), the quicker you will feel better if that in fact is what is causing you to suffer.
Hugs, Des
Co-Moderator ~ IBS Forum
~My reality check bounced
Please help Healing Well continue to help others by donating http://www.healingwell.com/donate
Dx: IBS 1989, Diverticulosis 2004, UC 2005, Sjogren's 2006
Meds: Sulfazine EC, Mesalamine, Chlorzoxazone, Oxaprozin, Symax SL, Protonix, Xanax XR, Supplements
yes I have def checked out all the lyme boards but Ive heard so many bad things about labcorp with false neg and I dont have the money for ingenex labs. Ive spent all my money on drs. that tell me I just have IBS. So Im trying to figure out if maybe thats all it is.
Hi my4bostons,
I understand your reluctance. My reluctance to believe certain things is that some of these "Lyme Literate MDs" are doing some things that haven't been tested by reputable scientific studies. I think lots of people are told they have Lyme, and they don't, but are put on years and years of heavy duty antibiotics. BUT......your case is different. You had the rash, and then proceeded to get the symptoms of Lyme shortly thereafter. It's really a shame that you weren't treated immediately. But I imagine there are alot of people who don't know about the rash, and what it means. Don't punish yourself for not knowing at the time.
I really believe that some of these labs used by "Lyme Docs" produce alot of false positives. I had my Lyme tests run at BBI Clinical Labs in New Britain, CT. Maybe you've heard of them. I think they are very reliable.
It's a shame that your doctor is blowing you off. Less than a week's worth of antibiotic, a month after the rash, probably was too little too late. Can you TELL your doctor that you really want this test done? If he still doesn't help you, I'd find another doctor. If I were you, I'd probably try an infectious disease doctor and really stress the bullseye rash. I think it's real possible you have Lyme, and you need to start treating it soon. I'm sorry for your problems.
I understand your reluctance. My reluctance to believe certain things is that some of these "Lyme Literate MDs" are doing some things that haven't been tested by reputable scientific studies. I think lots of people are told they have Lyme, and they don't, but are put on years and years of heavy duty antibiotics. BUT......your case is different. You had the rash, and then proceeded to get the symptoms of Lyme shortly thereafter. It's really a shame that you weren't treated immediately. But I imagine there are alot of people who don't know about the rash, and what it means. Don't punish yourself for not knowing at the time.
I really believe that some of these labs used by "Lyme Docs" produce alot of false positives. I had my Lyme tests run at BBI Clinical Labs in New Britain, CT. Maybe you've heard of them. I think they are very reliable.
It's a shame that your doctor is blowing you off. Less than a week's worth of antibiotic, a month after the rash, probably was too little too late. Can you TELL your doctor that you really want this test done? If he still doesn't help you, I'd find another doctor. If I were you, I'd probably try an infectious disease doctor and really stress the bullseye rash. I think it's real possible you have Lyme, and you need to start treating it soon. I'm sorry for your problems.
Hi Cathy, You def. have a different outlook on lyme than Im used to reading. I appreciate a diff. point of veiw thank you for taking out your time to chat with me. As far as the Dr. that laughed at me, that was the first and last time I went to him. The Dr. I have now is very compasionate but knows nothing about Lyme. She gave me a lab write up to go get tested at Labcorp but Ive been putting it off due to all the feedback I have read about them. It almost seems like it will be pointless to spent $200 and be back at square one. I spent my money on a gastro so that he could tell me it IBS. What are your thoughts on Lab corp? Shoulld I get my bloodwork done there or would you suggest just making an appt with an ifectious disease Dr?
Hi my4bostons,
I sure don't want to steer you wrong. I can only tell you what I would do. What are you hearing about Labcorp and from whom? If you're hearing it on the Lyme boards, then I would take it with a grain of salt. I think it's a reputable lab. I got my testing done at BBI in Boston....and it was negative. I think alot of people on the Lyme forums have various illnesses......not all Lyme. But they want to put a face on their illness, and they really want to get a positive test result, so they can at least say "I have Lyme and that's why I feel so bad". So I'm wondering if they're badmouthing Labcorp, because they've gotten negative results? Do you understand what I'm saying?
I think it's true that our testing needs to be improved, but at some point, those of us who feel awful have to come to terms that it might NOT be Lyme, but something else with similar symptoms.
But in your case, I think it would be positive. That bullseye rash is pretty indicative. But.....I'm sure there are false negatives out there.
Do you live in a large area, where you could find a really good infectious disease doctor? I wouldn't just pick one out of the phone book.
What would be ideal is if you could find a good one, and then he could tell you where to get tested.
But that would be more money for you.....
It's a real toss-up my4bostons..........I think if you could get the money, I would go to the ID doc, and go from there. Surely he would know more about Lyme than your present doctor. It's unfortunate that she doesn't know anything about it.
If you do go to an ID doc......be sure to stress your bullseye rash.
I don't want to put anyone down on the Lyme forums. But I was on one for quite a while a few years ago, and it was almost like a cult. Everybody thought they had lyme, and everyone hated anyone who implied that it might be anything else. They were going to doctors who were known to treat Lyme, and those treatments were potentially harmful to people. They had all sorts of unsubstantiated theories about Lyme and the spirochete, and how it would hide in the body, and come back out, and all the crazy symptoms it would cause. People were doing very scary things, like giving themselves IV antibiotics while laying underwater in their bathtubs filled with scalding hot water, etc.
Don't get me wrong.........there is alot of lyme disease out there and very few doctors know much about it, but that's no reason to do foolish things.
So......I would first want to know if you're in a large metropolitan area where you might find a good infectious disease doctor. If not, I guess I would go ahead and get the Lyme test at Labcorp.
I hope I haven't confused you too much. Also, if you do get a negative result back, then I would start looking at some of the other chronic illnesses (like fibromyalgia), and trying to do some of the things for that, that others have found useful in controlling pain, fatigue, etc.
I sure don't want to steer you wrong. I can only tell you what I would do. What are you hearing about Labcorp and from whom? If you're hearing it on the Lyme boards, then I would take it with a grain of salt. I think it's a reputable lab. I got my testing done at BBI in Boston....and it was negative. I think alot of people on the Lyme forums have various illnesses......not all Lyme. But they want to put a face on their illness, and they really want to get a positive test result, so they can at least say "I have Lyme and that's why I feel so bad". So I'm wondering if they're badmouthing Labcorp, because they've gotten negative results? Do you understand what I'm saying?
I think it's true that our testing needs to be improved, but at some point, those of us who feel awful have to come to terms that it might NOT be Lyme, but something else with similar symptoms.
But in your case, I think it would be positive. That bullseye rash is pretty indicative. But.....I'm sure there are false negatives out there.
Do you live in a large area, where you could find a really good infectious disease doctor? I wouldn't just pick one out of the phone book.
What would be ideal is if you could find a good one, and then he could tell you where to get tested.
But that would be more money for you.....
It's a real toss-up my4bostons..........I think if you could get the money, I would go to the ID doc, and go from there. Surely he would know more about Lyme than your present doctor. It's unfortunate that she doesn't know anything about it.
If you do go to an ID doc......be sure to stress your bullseye rash.
I don't want to put anyone down on the Lyme forums. But I was on one for quite a while a few years ago, and it was almost like a cult. Everybody thought they had lyme, and everyone hated anyone who implied that it might be anything else. They were going to doctors who were known to treat Lyme, and those treatments were potentially harmful to people. They had all sorts of unsubstantiated theories about Lyme and the spirochete, and how it would hide in the body, and come back out, and all the crazy symptoms it would cause. People were doing very scary things, like giving themselves IV antibiotics while laying underwater in their bathtubs filled with scalding hot water, etc.
Don't get me wrong.........there is alot of lyme disease out there and very few doctors know much about it, but that's no reason to do foolish things.
So......I would first want to know if you're in a large metropolitan area where you might find a good infectious disease doctor. If not, I guess I would go ahead and get the Lyme test at Labcorp.
I hope I haven't confused you too much. Also, if you do get a negative result back, then I would start looking at some of the other chronic illnesses (like fibromyalgia), and trying to do some of the things for that, that others have found useful in controlling pain, fatigue, etc.
Post Edited (CathyA) : 4/24/2006 2:33:52 PM (GMT-6)
One more question my4bostons.....when you were treated in the ER for mono......did they do a test or was it all based on symptoms?