Now something new...ugh
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nsewell
- Long Time Contributor
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- Joined: Wed Feb 15, 2006 12:14 pm
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klt03301
- Long Time Contributor
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- Joined: Fri Feb 29, 2008 9:41 pm
Bobbie, Roy and Nsewell...thanks so much for your replies. I was able to walk twice last week, 2 miles each time. It did make me feel better. I can't go back to my Mom's right now...she has company for a week, and she hasn't been feeling up to par, herself. My nausea has gotten much better w/o the zofran and the valium. I took both for a couple of days and got plugged up, so I will only take them if I feel I need them. Glad to have them though!
I'm still having these symptoms and I've been off Vanco for 50 days now:
Pain in lower abdomen, especially after BM...soreness
Mild nausea
Bloating...I stay bloated
BAD hot flashes and sweating all over my body after eating and upon waking in the morning. Really don't believe these are associated with periomenopause. It feels kind of like a tiny electric shock/stinging.
Chills...I go between hot and cold throughout the day; no fever
Severe dizziness
Low blood pressure
No D in a very long time...stools are well formed and look normal, but they still have that C Diff smell
Severe fatigue
Brain fog
Severe constipation...have only had D the first few days prior to my diagnosis, and one day upon relapsing after 10 days off the first script...
have been constipated most of the time since being diagnosed
I'm starting to feel some cramping now...similar to my pre C Diff IBS
I continue to lose weight although I'm eating well
I got my stool sample results back from my naturopath...he is an MD (not one single conventional med doc I've seen for C Diff has been so thorough in this type of testing and I've never been told if they've checked for these...that's freakin' sad). If I hadn't gone to him, I wouldn't even know these things. I met with him for 2 hours to go over these results. 2 HOURS. OK...I get at the most 10 minutes with my other docs. When I first saw him, he spent from 10:a.m. until 4:30 p.m. with me going over all of my medical history and examining me. He spends one day a week seeing new patients and this is the usual amount of time he spends with each. How many doctors are going to do that? Yeah, it was expensive because Medicare doesn't cover it, but it was worth it! My Mom helped me pay for it; otherwise, I couldn't have done it. GOD BLESS YOU, MOM!
Just so you know, I had these diagnoses prior to C Diff:
Fibromyalgia..had been under good control
Irritable Bowel Syndrome...had been under good control
Post Traumatic Stress Disorder (this one was the worst for me and I do see someone for it)
Back to the stool tests:
I have roundworms...ewwww, ewwww.....that's just gross. Don't know how I got those. I've been a chronic hand washer all my life. Maybe in something that wasn't cooked properly.
I have a moderate amount of candida in my intestines. I took Diflucan a couple of weeks prior to this testing, but still have it.
I have a gluten sensitivity; I've had to buy gluten free foods...they taste like cardboard :( and it's very complicated, expensive and inconvenient. I guess it will get easier as I go. Never had this before, but was told that many people can't tolerate some things after C Diff that they did before, as everyone here knows. No milk, soy or egg sensitivity.
My Total Intestinal SIgA count is 144...normal is 400-800. (Google it). I have 4 bacterial pathogens in my stool that should not be detected: Bacillus species, Enterococcus species, Alpha Hemolytic Streptococcus, and Cornyebacterium. Attached to this is a note that reads: In general, early distrubances in microfloral balance may be reflected in the non expected and selective overgrowth of microbial species that are usually non dominant.
What's scaring me the most is the Enterococcus...I know many of you are aware of Vanocmycin Resistant Enterococcus (VRE). I took two rounds of Vanco and shouldn't that have wiped it out? Do I now have VRE? I'm seeing the GI doc tomorrow and the ID doc on Friday. I'm not feeling too happy about that one. I'm taking my test results with me and if they don't like the fact that I went elsewhere to get them performed, too damn bad...they never offered!!! It may be nothing to be concerned about, but it is a question I have.
C Diff is negative, no ameba, no giardia, no h pylori, no cryptosporidium antigen, no tapeworm, toxoplasma or trichinella spiralis.
My Adrenal Stress Index:
Cortisol and DHEA are elevated...Cortisol Burden is 71, normal 23-42. In other words, I'm STRESSED TO THE MAX! Chronic stress with cortisol elevation may cause functional insulin resistance, hyperinsulin responses to carboydrate intake, and pancreatic exhaustion. Perhaps this is why I'm sweating within 10 minutes of eating? My Chymotrypsin (a marker enzyme for pancreatic exocrine output) is abnormally low and not putting out any of the enzymes it should.
I know this is a lot of technical stuff, but you can google any of those things if you're interested in finding out more about them.
To make a long story short: STRESS AND ANXIETY ARE CAUSING THE MAJORITY OF THESE PROBLEMS. My immune system has been suppressed, playing a major role in my intestinal health. It wasn't good to begin with, the antibiotic triggered C Diff, and the anxiety throughout this ordeal has worsened it. Your mind has to be well in order for your body to feel well and vice versa. HUGE CONNECTION BETWEEN THE TWO.
I'm taking something to kill the roundworm...has to be done over a period of 180 days and the naturopath gave me the prescription for it. I'm also going to take the botanicals the naturopath has given me to take care of the bacterial pathogens, the enzymes he's prescribed to help with my digestion, begin an exercise program, stick with the gluten free diet, and take the probiotics he's recommended. I'm already taking some, but will switch to his. He wants me on three different kinds, several times a day. Just hope my body can handle it.
Going to ask my GI and ID about the Enterococcus and find out if
t's VRE. I'm going to have to be half dead before I ever take another antibiotic.
I know this was a long post and a lot of info, but it's no wonder I feel so sick. Just thought some of this might be helpful to others out there. I know this is the type of information I wanted and it helps explain why I feel so terrible. It has made me more positive that I will get through this and has given me steps that I can take towords getting well. Without it, I was always questioning what was going on with me.
I hope everyone is having a good day...Karen
I'm still having these symptoms and I've been off Vanco for 50 days now:
Pain in lower abdomen, especially after BM...soreness
Mild nausea
Bloating...I stay bloated
BAD hot flashes and sweating all over my body after eating and upon waking in the morning. Really don't believe these are associated with periomenopause. It feels kind of like a tiny electric shock/stinging.
Chills...I go between hot and cold throughout the day; no fever
Severe dizziness
Low blood pressure
No D in a very long time...stools are well formed and look normal, but they still have that C Diff smell
Severe fatigue
Brain fog
Severe constipation...have only had D the first few days prior to my diagnosis, and one day upon relapsing after 10 days off the first script...
have been constipated most of the time since being diagnosed
I'm starting to feel some cramping now...similar to my pre C Diff IBS
I continue to lose weight although I'm eating well
I got my stool sample results back from my naturopath...he is an MD (not one single conventional med doc I've seen for C Diff has been so thorough in this type of testing and I've never been told if they've checked for these...that's freakin' sad). If I hadn't gone to him, I wouldn't even know these things. I met with him for 2 hours to go over these results. 2 HOURS. OK...I get at the most 10 minutes with my other docs. When I first saw him, he spent from 10:a.m. until 4:30 p.m. with me going over all of my medical history and examining me. He spends one day a week seeing new patients and this is the usual amount of time he spends with each. How many doctors are going to do that? Yeah, it was expensive because Medicare doesn't cover it, but it was worth it! My Mom helped me pay for it; otherwise, I couldn't have done it. GOD BLESS YOU, MOM!
Just so you know, I had these diagnoses prior to C Diff:
Fibromyalgia..had been under good control
Irritable Bowel Syndrome...had been under good control
Post Traumatic Stress Disorder (this one was the worst for me and I do see someone for it)
Back to the stool tests:
I have roundworms...ewwww, ewwww.....that's just gross. Don't know how I got those. I've been a chronic hand washer all my life. Maybe in something that wasn't cooked properly.
I have a moderate amount of candida in my intestines. I took Diflucan a couple of weeks prior to this testing, but still have it.
I have a gluten sensitivity; I've had to buy gluten free foods...they taste like cardboard :( and it's very complicated, expensive and inconvenient. I guess it will get easier as I go. Never had this before, but was told that many people can't tolerate some things after C Diff that they did before, as everyone here knows. No milk, soy or egg sensitivity.
My Total Intestinal SIgA count is 144...normal is 400-800. (Google it). I have 4 bacterial pathogens in my stool that should not be detected: Bacillus species, Enterococcus species, Alpha Hemolytic Streptococcus, and Cornyebacterium. Attached to this is a note that reads: In general, early distrubances in microfloral balance may be reflected in the non expected and selective overgrowth of microbial species that are usually non dominant.
What's scaring me the most is the Enterococcus...I know many of you are aware of Vanocmycin Resistant Enterococcus (VRE). I took two rounds of Vanco and shouldn't that have wiped it out? Do I now have VRE? I'm seeing the GI doc tomorrow and the ID doc on Friday. I'm not feeling too happy about that one. I'm taking my test results with me and if they don't like the fact that I went elsewhere to get them performed, too damn bad...they never offered!!! It may be nothing to be concerned about, but it is a question I have.
C Diff is negative, no ameba, no giardia, no h pylori, no cryptosporidium antigen, no tapeworm, toxoplasma or trichinella spiralis.
My Adrenal Stress Index:
Cortisol and DHEA are elevated...Cortisol Burden is 71, normal 23-42. In other words, I'm STRESSED TO THE MAX! Chronic stress with cortisol elevation may cause functional insulin resistance, hyperinsulin responses to carboydrate intake, and pancreatic exhaustion. Perhaps this is why I'm sweating within 10 minutes of eating? My Chymotrypsin (a marker enzyme for pancreatic exocrine output) is abnormally low and not putting out any of the enzymes it should.
I know this is a lot of technical stuff, but you can google any of those things if you're interested in finding out more about them.
To make a long story short: STRESS AND ANXIETY ARE CAUSING THE MAJORITY OF THESE PROBLEMS. My immune system has been suppressed, playing a major role in my intestinal health. It wasn't good to begin with, the antibiotic triggered C Diff, and the anxiety throughout this ordeal has worsened it. Your mind has to be well in order for your body to feel well and vice versa. HUGE CONNECTION BETWEEN THE TWO.
I'm taking something to kill the roundworm...has to be done over a period of 180 days and the naturopath gave me the prescription for it. I'm also going to take the botanicals the naturopath has given me to take care of the bacterial pathogens, the enzymes he's prescribed to help with my digestion, begin an exercise program, stick with the gluten free diet, and take the probiotics he's recommended. I'm already taking some, but will switch to his. He wants me on three different kinds, several times a day. Just hope my body can handle it.
Going to ask my GI and ID about the Enterococcus and find out if
t's VRE. I'm going to have to be half dead before I ever take another antibiotic.
I know this was a long post and a lot of info, but it's no wonder I feel so sick. Just thought some of this might be helpful to others out there. I know this is the type of information I wanted and it helps explain why I feel so terrible. It has made me more positive that I will get through this and has given me steps that I can take towords getting well. Without it, I was always questioning what was going on with me.
I hope everyone is having a good day...Karen
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klt03301
- Long Time Contributor
- Posts: 642
- Joined: Fri Feb 29, 2008 9:41 pm
Oops, forgot to mention that some of these results (cortisol and perhaps some others) came from saliva I collected 4xday over a 12 hour period.
Also, anyone who is gluten sensitive...my Mom is preparing some food for me today (SHE IS INCREDIBLE!!) and I give her so much credit for getting me this far), called an 800 number at Food Lion to see if the margarine she wanted to use had any gluten in it. The representative she spoke with told her that she was glad my Mom called, because Food Lion is going to start to include gluten in the labels on their food because so many people have a problem with it. The representative said she felt that most other stores would probably start doing the same...I hope so!
Also, anyone who is gluten sensitive...my Mom is preparing some food for me today (SHE IS INCREDIBLE!!) and I give her so much credit for getting me this far), called an 800 number at Food Lion to see if the margarine she wanted to use had any gluten in it. The representative she spoke with told her that she was glad my Mom called, because Food Lion is going to start to include gluten in the labels on their food because so many people have a problem with it. The representative said she felt that most other stores would probably start doing the same...I hope so!
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nsewell
- Long Time Contributor
- Posts: 822
- Joined: Wed Feb 15, 2006 12:14 pm
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klt03301
- Long Time Contributor
- Posts: 642
- Joined: Fri Feb 29, 2008 9:41 pm
LMAO Roy...yes, I'm a worrier and have been all my life :(
Hey, maybe now I can turn the worrier into a WARRIOR! Yep, I knew my gut flora was out of whack, but that enteroccous WORIED ME. I think I'm going to take a valium now :-) Thanks for being you, Roy. You always make me smile, along with many others here!
Hey, maybe now I can turn the worrier into a WARRIOR! Yep, I knew my gut flora was out of whack, but that enteroccous WORIED ME. I think I'm going to take a valium now :-) Thanks for being you, Roy. You always make me smile, along with many others here!
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Bobbie
- Administrator
- Posts: 12688
- Joined: Sat Aug 06, 2005 8:00 pm
klt03301,
I'm a worrier, too -- hard to break the habit. Do keep as busy as possible. Glad you are walking again. Exercise helps stress tremendously. Sounds as though you have a terrific mother. Hooray for Mom! Most of us mothers would do anything for our "kids" re. of their age.
C. diff. is stressful for even the "non-worriers" plus you have other problems. I'd leave the medical "stuff" for the docs. to answer, including VRE. We can't give medical advice on this site.
I know a little about celiac disease -- mostly that it is difficult to diagnose. One of our frequent posters was diagnosed with it after C. diff. & was on a gluten-free diet for several years. I believe now doc. thinks he was wrong. Imagine that! Re. your "worms," could you have "picked them up" from pets? If your have pets, consult your vet.
If you have to avoid gluten, there are dieticians attached to some grocery stores (Hy-Vee is one) that will help you (for free) find gluten-free foods. Google & see if you can find some.
Do go to the docs. prepared. I've posted this often on the site & will repeat it one more time. Put all your medical issues, meds., & medical history on the computer & take a copy to each doc. you see. See example in FAQ- Doctors' Visits (Including Med. Forms) If you have to see a variety of docs., this cuts down on you frantically trying to fill out their forms & your stress. I scan their med. forms & answer anything I haven't answered on my computerized version. Otherwise, I write only my name & date on the top of the sheet & "See atttached list." Make a list of your questions on the computer & make 2 copies. Give one to doc. & go down list together & write his/her answers. (Try to make list as concise as possible.)
Good luck with your doc.'s apointments.
I'm a worrier, too -- hard to break the habit. Do keep as busy as possible. Glad you are walking again. Exercise helps stress tremendously. Sounds as though you have a terrific mother. Hooray for Mom! Most of us mothers would do anything for our "kids" re. of their age.
C. diff. is stressful for even the "non-worriers" plus you have other problems. I'd leave the medical "stuff" for the docs. to answer, including VRE. We can't give medical advice on this site.
I know a little about celiac disease -- mostly that it is difficult to diagnose. One of our frequent posters was diagnosed with it after C. diff. & was on a gluten-free diet for several years. I believe now doc. thinks he was wrong. Imagine that! Re. your "worms," could you have "picked them up" from pets? If your have pets, consult your vet.
If you have to avoid gluten, there are dieticians attached to some grocery stores (Hy-Vee is one) that will help you (for free) find gluten-free foods. Google & see if you can find some.
Do go to the docs. prepared. I've posted this often on the site & will repeat it one more time. Put all your medical issues, meds., & medical history on the computer & take a copy to each doc. you see. See example in FAQ- Doctors' Visits (Including Med. Forms) If you have to see a variety of docs., this cuts down on you frantically trying to fill out their forms & your stress. I scan their med. forms & answer anything I haven't answered on my computerized version. Otherwise, I write only my name & date on the top of the sheet & "See atttached list." Make a list of your questions on the computer & make 2 copies. Give one to doc. & go down list together & write his/her answers. (Try to make list as concise as possible.)
Good luck with your doc.'s apointments.
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ClDif
- Regular Contributor
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- Joined: Sun Dec 30, 2007 1:58 pm
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klt03301
- Long Time Contributor
- Posts: 642
- Joined: Fri Feb 29, 2008 9:41 pm
Nsewell...thanks for the congrats...I'm counting my days to 90. I'm over half way there!
Bobbie...you gave some great advice. I've already printed out all of my questions and meds I take because I'd seen this a while ago in one of your previous posts. Fantastic idea! Regarding the celiac...I will ask the GI doc. Maybe the gluten is bothering me because my intestines are still sensitive from the C Dif. I used to work out all the time prior to C Diff, and I've been to the gym several times since I got sick. That's all I could handle, but I'm feeling better and will start slowly. I don't have any pets, but I've fostered many stray/abandoned animals over the past few years until they could get a good home. I'll let you know how my doc appts go.
CIDif...I've wondered whether the probiotic I've been taking has enterococcus in it. I'm calling the manufactuer today to find out. Thanks for letting me know it was in your probiotic.
You've all been so helpful and supportive and I thank you so much for helping me through this. I do feel I'm getting better. So far, most of my docs do feel that anxiety is causing me to feel worse.
Hope you all are having a great day!
Bobbie...you gave some great advice. I've already printed out all of my questions and meds I take because I'd seen this a while ago in one of your previous posts. Fantastic idea! Regarding the celiac...I will ask the GI doc. Maybe the gluten is bothering me because my intestines are still sensitive from the C Dif. I used to work out all the time prior to C Diff, and I've been to the gym several times since I got sick. That's all I could handle, but I'm feeling better and will start slowly. I don't have any pets, but I've fostered many stray/abandoned animals over the past few years until they could get a good home. I'll let you know how my doc appts go.
CIDif...I've wondered whether the probiotic I've been taking has enterococcus in it. I'm calling the manufactuer today to find out. Thanks for letting me know it was in your probiotic.
You've all been so helpful and supportive and I thank you so much for helping me through this. I do feel I'm getting better. So far, most of my docs do feel that anxiety is causing me to feel worse.
Hope you all are having a great day!
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klt03301
- Long Time Contributor
- Posts: 642
- Joined: Fri Feb 29, 2008 9:41 pm
CIDif...just got off the phone with the manufacturer of Enterobiotic Plus. It does have soil based organisms in it, where enterrococcus is found. The name "Enterobiotic" should have given me a clue...DUH. I feel pretty stupid right now :-) Being the worry-wort that I am, I'm still gonna ask the doc...he's the one who recommend this probiotic. Thanks again to all!
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