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Weird Symptoms
I don't know if this is the right forum for this, but I know, from reading and posting, that there are others of you that have weird stuff that's gone on with their health now and then. Mickey, I think you mentioned it, Cindi, and a few others, including me. I shared that I'd been struggling for a long time, given the bum's rush, thrown in the fibromyalgia wastebasket, and then had my sigmoid colon blow out. Anyway, that part of my body was removed, along with about 6-8 inches of the descending colon. Now I'm just deathly afraid that what is left of my colon is getting sick now too and it opens so many questions for me - is it recurring events concerning my ovaries and uterus causing the problems, or vice versa? I think I may be getting the answer here.
I'm really getting scared again ladies. I've been running a temperature on and off for a week now. My skin is so broken out on my face, very blotchy, bumpy and peeling. Lupus has been ruled out. I'm just so not wanting to get back on the roller coaster of test after test, negative after negative, rolled eyes and raised eyebrows, some of you I'm sure understand. I know something is wrong, going seriously wrong again, and I'm simply put scared to death, and I'm sure that's not going to help matters. Over the last two days, I was so constipated I needed dynomite. Today, I have such severe diarrhea I'm worried about dehydrating, and I'm running a temperature. I have fever blisters under and lining the outside edge of my tongue, I'm bloated, nauseated, all the things that happened before.
I think there's a link
I'm really getting scared again ladies. I've been running a temperature on and off for a week now. My skin is so broken out on my face, very blotchy, bumpy and peeling. Lupus has been ruled out. I'm just so not wanting to get back on the roller coaster of test after test, negative after negative, rolled eyes and raised eyebrows, some of you I'm sure understand. I know something is wrong, going seriously wrong again, and I'm simply put scared to death, and I'm sure that's not going to help matters. Over the last two days, I was so constipated I needed dynomite. Today, I have such severe diarrhea I'm worried about dehydrating, and I'm running a temperature. I have fever blisters under and lining the outside edge of my tongue, I'm bloated, nauseated, all the things that happened before.
I think there's a link
Give up onions? Garlic? Oy vay!!!
I don't know, could be, but I eat one or the other of those almost every day. I cook dinner most days and I use TONS of fresh pressed garlic and onions. Always have. Thanks for the advice though. You never know. Anything is possible with my body these days. . .
Barb
I don't know, could be, but I eat one or the other of those almost every day. I cook dinner most days and I use TONS of fresh pressed garlic and onions. Always have. Thanks for the advice though. You never know. Anything is possible with my body these days. . .
Barb
No, I was thinking of onions. I remembered it during lunch today.
I had a classmate in high school who suffered from chronic digestive tract problems like indigestion and diarrhea, usually then followed by constipation. She had stomach pains as well, but doctors decided that she had a nervous problem due to stress (she was in my advanced placement classes), or perhaps she had an early stage of Crohn's disease. She also had mouth sores that her doctor or dentist believed to just be associated with some virus (way back in the day, it was more difficult to test for some viruses.)
Anyway, one day she came into the first period class and was in so much pain that she had to lie down in the floor. That day, her parents picked her up and took her straight to the hospital. After some testing there, it was determined that she had an "allergy" to some compound found in onions, I think in garlic too. That has been a long time ago, but I do remember that the doctor at the hospital told her that essentially the onions were eating holes in her stomach and intestines. Obviously, she stopped eating foods containing onions. Afterwards, she and her doctors realized the connection to the mouth sores as those went away completely as well.
I had a classmate in high school who suffered from chronic digestive tract problems like indigestion and diarrhea, usually then followed by constipation. She had stomach pains as well, but doctors decided that she had a nervous problem due to stress (she was in my advanced placement classes), or perhaps she had an early stage of Crohn's disease. She also had mouth sores that her doctor or dentist believed to just be associated with some virus (way back in the day, it was more difficult to test for some viruses.)
Anyway, one day she came into the first period class and was in so much pain that she had to lie down in the floor. That day, her parents picked her up and took her straight to the hospital. After some testing there, it was determined that she had an "allergy" to some compound found in onions, I think in garlic too. That has been a long time ago, but I do remember that the doctor at the hospital told her that essentially the onions were eating holes in her stomach and intestines. Obviously, she stopped eating foods containing onions. Afterwards, she and her doctors realized the connection to the mouth sores as those went away completely as well.
Hi Mickey.
Could you have been thinking of "CMV Mouth?" Cytomeglovirus can cause a breakout in the mouth, similar to fever blishters or cold sores caused by herpes zoster. They do resolve by themselves, and I am positive for CMV titers. I have an outbreak like this a couple of times a year, for a very long time. It's just that in the last couple of years they've gotten worse and seem to take much longer to resolve as my immune system is getting more and more taxed by trying to keep up with things. I've simply got something that hits up my autoimmune system now and then that is allowing these viruses that are normally suppressed to be activated. We thought it was the chronic diverticulitis. I'm now questioning whether having a hemorraghic cyst or whatever kind of cyst on and off on top of the leaky colon thing going on for God knows how long could be what is finally putting my immune system over the edge of what it can handle. I've been fighting for so long, I'm getting older. Throw menopause in for kicks. . . not a pretty picture.
Anyway, this has gone on for so long, since 1977, alternating with the dysfunctional bleeding now since 2000, and I'm just so burned out. Thanks again, Barb
Could you have been thinking of "CMV Mouth?" Cytomeglovirus can cause a breakout in the mouth, similar to fever blishters or cold sores caused by herpes zoster. They do resolve by themselves, and I am positive for CMV titers. I have an outbreak like this a couple of times a year, for a very long time. It's just that in the last couple of years they've gotten worse and seem to take much longer to resolve as my immune system is getting more and more taxed by trying to keep up with things. I've simply got something that hits up my autoimmune system now and then that is allowing these viruses that are normally suppressed to be activated. We thought it was the chronic diverticulitis. I'm now questioning whether having a hemorraghic cyst or whatever kind of cyst on and off on top of the leaky colon thing going on for God knows how long could be what is finally putting my immune system over the edge of what it can handle. I've been fighting for so long, I'm getting older. Throw menopause in for kicks. . . not a pretty picture.
Anyway, this has gone on for so long, since 1977, alternating with the dysfunctional bleeding now since 2000, and I'm just so burned out. Thanks again, Barb
I can't believe how much you have gone through! It really does sound like you have autoimmune disease and, more than anything, need a good immunologist who will look at your symptoms as a whole and is able to think outside the proverbial box. If you don't mind emailing me privately, I would love to try to help you out. My email address is ***@****. - Maura
i was thinking to myself that it also does sound like lupus...my ex mil,and my sister in law has lupus,so i seen alot of this with them...i can relate on the terms of the diareah...i have it at this point up to 15-20 times a day..on a good day only about 11-12..i know its frustrating,even more so when you dont have any answers or have no clue whats going on...you will be in my prayers tonight and in the cmoing days and weeks ahead...
The blisters under the tongue...that rings a bell but I cannot remember who or what!
Have you ever been tested for specific allergies? I have an odd collection of allergies, including milk (no, not lactose intolerance, but an actual allergic reaction to the proteins in milk! You can imagine the trouble I had getting to the bottom of that issue!) Even food colorings can cause reactions for me. My allergies usually produce a standard list of reactions that often begin with odd taste sensations then watering eyes that in turn give way to skin inflammations and very frequently end in diarrhea. What fun.
Have you ever been tested for specific allergies? I have an odd collection of allergies, including milk (no, not lactose intolerance, but an actual allergic reaction to the proteins in milk! You can imagine the trouble I had getting to the bottom of that issue!) Even food colorings can cause reactions for me. My allergies usually produce a standard list of reactions that often begin with odd taste sensations then watering eyes that in turn give way to skin inflammations and very frequently end in diarrhea. What fun.
Barb, it sounds like your'e going through hell....I am certain Dawn will be able to help as she is able to relate to your situation.
It sounds horrible, and I wouldn't want to go the doctor either.....but, you know you should.....we all play that head game.....still, you know you should go.
Please, don't let things get any worse.....I wish you didn't have to go through this, but, this is where you are right now.
You really don't have any choice....buck up and get it over with, Lady! You are strong, and, you are smart....I know it's not easy having to be strong all the time....that is why we are all here for you...just go and get it over with...get it behind you.
My heart is with you...Peace, Barb.
dian
It sounds horrible, and I wouldn't want to go the doctor either.....but, you know you should.....we all play that head game.....still, you know you should go.
Please, don't let things get any worse.....I wish you didn't have to go through this, but, this is where you are right now.
You really don't have any choice....buck up and get it over with, Lady! You are strong, and, you are smart....I know it's not easy having to be strong all the time....that is why we are all here for you...just go and get it over with...get it behind you.
My heart is with you...Peace, Barb.
dian
I have been tested inside and out. I've been seen by neurologists, rhuematologists, internal medicine docs, infections disease docs, you name it, I've been tested for it, including Lyme disease, RA, MS, etc., etc., etc. Negative. Colonoscopy ruled out Chron's and ulcerative colitis, and got me the diverticulitis diagnosis and ultimate surgery. Whatever it is they look for in the blood for lupus, wasn't there, same for RA and all the other autoimmune stuff that has a definitive blood test. My doctor also said that sometimes they never figure out what it is. We have all assumed that the CMV, EBV and Herpes Zoster are what keep tripping my autoimmune system when they turn on.
Pathology on the part of my colon that was removed found that the diverticulitis was chronic - I'd had many episodes of infection in the sigmoid that I probably toughed my way through thinking I just had the flu or something. This last blow out left a hole in my sigmoid that was 6 inches in diameter and the inflammation and infection in my abdomen was massive. I don't know however where this all initiated from - did I really have diverticulitis, normally an elderly person's disease, or did my left ovary and perhaps endometriosis or something make my colon sick and that's what's going on again. I cannot tell you how many times before that I presented at the hospital with a blazing fever and nothing that could be found but a HUGE white cell count. My record is 24,000. Several days in hospital, IV antibiotics and then I'd be good to go for a couple of years.
This has been on going since about 1977. Massive infection in my body, but not ever being confirmed as to where. In April of 2003, I went into the ER from work with a temperature of 105.2, a white count of 21,000 and NOTHING was ever found in my urine when it was cultured even though they said I had pyleonephritis. Nothing grew in the cultures of my blood or my urine and it was assumed that was because of the nuclear weapons that were used to fight the infection - flagyl, levaquin, by IV that time. Keflex, Amakacin and other heavies. At one point I was taking flagyl and cipro, daily, for three months. That was just to get me well enough to have the bowel surgery. I've had every heavy duty antibiotic you can think of. Allergic reactions to some that made me sicker than I started out. I get well, for awhile, and then off to the races we go again. The diverticulitis was the first time something concrete was found and I'd put all my hope in that being my "cure" my "solution." Thus my disappointment right now. FINALLY, something real.
So, there's all these signs pointing towards yet another crash, yet another round of excruciating pain, prodding, poking, testing, medicines that are really nasty. . . I know I have to do it. I really think I should just stay on antibiotics for the rest of my life. I've thought that since the fourth time I went in the hospital for a "kidney infection" that wasn't.
I'm sorry this is so long. I really need to do this ladies, and I so appreciate that you all are here. It is very positive here, very supportive. Love, hugs and God bless, Barb
Pathology on the part of my colon that was removed found that the diverticulitis was chronic - I'd had many episodes of infection in the sigmoid that I probably toughed my way through thinking I just had the flu or something. This last blow out left a hole in my sigmoid that was 6 inches in diameter and the inflammation and infection in my abdomen was massive. I don't know however where this all initiated from - did I really have diverticulitis, normally an elderly person's disease, or did my left ovary and perhaps endometriosis or something make my colon sick and that's what's going on again. I cannot tell you how many times before that I presented at the hospital with a blazing fever and nothing that could be found but a HUGE white cell count. My record is 24,000. Several days in hospital, IV antibiotics and then I'd be good to go for a couple of years.
This has been on going since about 1977. Massive infection in my body, but not ever being confirmed as to where. In April of 2003, I went into the ER from work with a temperature of 105.2, a white count of 21,000 and NOTHING was ever found in my urine when it was cultured even though they said I had pyleonephritis. Nothing grew in the cultures of my blood or my urine and it was assumed that was because of the nuclear weapons that were used to fight the infection - flagyl, levaquin, by IV that time. Keflex, Amakacin and other heavies. At one point I was taking flagyl and cipro, daily, for three months. That was just to get me well enough to have the bowel surgery. I've had every heavy duty antibiotic you can think of. Allergic reactions to some that made me sicker than I started out. I get well, for awhile, and then off to the races we go again. The diverticulitis was the first time something concrete was found and I'd put all my hope in that being my "cure" my "solution." Thus my disappointment right now. FINALLY, something real.
So, there's all these signs pointing towards yet another crash, yet another round of excruciating pain, prodding, poking, testing, medicines that are really nasty. . . I know I have to do it. I really think I should just stay on antibiotics for the rest of my life. I've thought that since the fourth time I went in the hospital for a "kidney infection" that wasn't.
I'm sorry this is so long. I really need to do this ladies, and I so appreciate that you all are here. It is very positive here, very supportive. Love, hugs and God bless, Barb
Hey girl, you know we love ya and we are here for you every step of the way. I just wish you did not have to go through this again. I think that you are wise enough to know your own body and perhaps it is a good idea to let the dr go in and have a look. Yous symptoms sound so familiar. The acne breakout could be you hormones out of wack and the fever blisters could be brought on by the stress of all of this. You are in my thoughts and prayers. Godspeed
~Tascha
~Tascha
Sorry, I'm back, ran out of space.
I don't want to start discussion again like we had a few weeks ago, mainly REALLY needing some support and a good vent. I tend to crawl into my own little shell, or into my own little den all by myself to be sick and lick my wounds. That's how I got so sick last summer and I so don't want to go there again. Friday I'll have the results of my endo biopsy and I really think I have no alternative but for the doctor to have a look see either by laproscope or colonoscopy again. I'm just feeling so very sick again. And I feel the downhill cascade going and am totally helpless to stop it.
At least I'm not bleeding, yet. . .
Thanks ladies, love, hugs and God bless. Barb
I don't want to start discussion again like we had a few weeks ago, mainly REALLY needing some support and a good vent. I tend to crawl into my own little shell, or into my own little den all by myself to be sick and lick my wounds. That's how I got so sick last summer and I so don't want to go there again. Friday I'll have the results of my endo biopsy and I really think I have no alternative but for the doctor to have a look see either by laproscope or colonoscopy again. I'm just feeling so very sick again. And I feel the downhill cascade going and am totally helpless to stop it.
At least I'm not bleeding, yet. . .
Thanks ladies, love, hugs and God bless. Barb
Hey girl! I am sorry you are having such a rough time. I am hoping that what I am about to tell you can give you a little relief. Biotene is a mouth rinse and they have gum too. It is promoted for people with dry mouth but it soothes mouth sores. It can be found in the toothbrush aisle, no RX needed. Good luck!
You say Lupus had been ruled out...how and by whom? A rhumy? Only ANA's done, any other antibody tests?
So many of the things you mentioned are classic lupus. I know how it is to get appointments with the specialist. Sometimes you are feeling better by the time you see them. Where you feeling bad when you saw them? Lupus "flares" like other autoimmune diseases. I would try to get to someone who could dx that right now while you feel so bad. ANA's can go up and down w/ a flare. Just wondering....there are about 5 antibody tests they could do. It would be good for them to see your face and mouth sores, too. Sometimes the dx of lupus is strictly clinical....no abnormal blood tests. Did you look up the rashes that go with lupus and compare them to yours.
I don't want to be pushy, just have REALLY BEEN THERE! I swore I was going to let all the docs rot...no more dollars for negative results and a big fat, "I just don't know". Didn't see a doc for almost a year. Then I had a TIA and had to start over. COuldn't hide and just live with it.
I hope you feel better but I also don't want you to miss a dx with all these symptoms present because you "pull a Cindi" and hide. After I get the gyn issues taken care of, unless by a miricle that was my problem all along...hope, hope...I am going to have to go 2 hours away to Ohio state's Hospital to a Rhumy who sees the rarer stuff. They just can't figure it out in our limited medical community. There are over 100 of those diseases!
Wow...how preachy can I be!!!??? Sorry, just can really relate!
Get better! Cindi
So many of the things you mentioned are classic lupus. I know how it is to get appointments with the specialist. Sometimes you are feeling better by the time you see them. Where you feeling bad when you saw them? Lupus "flares" like other autoimmune diseases. I would try to get to someone who could dx that right now while you feel so bad. ANA's can go up and down w/ a flare. Just wondering....there are about 5 antibody tests they could do. It would be good for them to see your face and mouth sores, too. Sometimes the dx of lupus is strictly clinical....no abnormal blood tests. Did you look up the rashes that go with lupus and compare them to yours.
I don't want to be pushy, just have REALLY BEEN THERE! I swore I was going to let all the docs rot...no more dollars for negative results and a big fat, "I just don't know". Didn't see a doc for almost a year. Then I had a TIA and had to start over. COuldn't hide and just live with it.
I hope you feel better but I also don't want you to miss a dx with all these symptoms present because you "pull a Cindi" and hide. After I get the gyn issues taken care of, unless by a miricle that was my problem all along...hope, hope...I am going to have to go 2 hours away to Ohio state's Hospital to a Rhumy who sees the rarer stuff. They just can't figure it out in our limited medical community. There are over 100 of those diseases!
Wow...how preachy can I be!!!??? Sorry, just can really relate!
Get better! Cindi
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