First of all, I am devastated to hear this about Lou. My thoughts and prayers go out to him at this difficult time.
I am wondering if anyone here has been stricken with severe abdominal and pelvic pain, and hips. I have been going from doctor to doctor, and just a few days ago had scoping down to my stomach and up the other end.
They found that I have pretty bad inflammation. They took some biopsies to check for C. Difficle for example (hope I spelled that right). There are no plaques, holes, blockages, so forth. I have had a CT with imaging, and a female ultrasound to check for fibroids and such. All normal.
So far, what has been confirmed is inflammation of the digestive track. Autoimmune tests have been done and are normal.
I'm afriad being on Cleocin oral for 11 months straight did this to me.
Has anyone else had this happen, and how long did it take to heal, and how did you treat it.
Merry Christmas you lovely people. I am not at church while my parents and my family are, because I am drugged up on pain killers.
Love to all, lymewreck
Posted by bettyg (Member # 6147) on :
lymewreck, my heart goes out to you. been there, done that.
sure sounds like you could be GLUTEN INTOLERANT too! allergic to wheat/rye/barley/oats!
read my last paragraph; i'm allergic to wheat & dairy profucts plus garlic!
i'm just going to copy/paste from my newbie links/advise here....
Colon problems; see www.celiac.com I discovered thru food allergy testing, I'm ALLERGIC TO: WHEAT/RYE as well as casein...cow's milk, egg whites, garlic, etc.
please be sure to put your comments on one of my posts advising about lou b; i'm sure angela is reading/printing out our good wishes for him too.
merry christmas to you/yours; take care of yourself; next year WE WILL BE HEALTHIER! Posted by lymie tony z (Member # 5130) on :
Hey Wreck,
I just had the same tests and results this past summer. I was'nt on cleomycin and they did'nt find any C.difficile either.
But lots of inflamation. The gastro duck gave me reglan and prevacid.
A lot of we lymies get gastro issues and the gastro ducks never heard of palsey of the gut so they think we're nuts...forget about how they feel when we mention lyme disease.
I'm sure that oral abx are at least part of the problems...that's why I prefer IV or IM...however I believe even those are metabolized in the gut somewhere...
I have had some relief with the reglan and prevacid...however at times I wonder if these medications are retarding my abx and supps.
Just another one of the wonderful symptoms of lyme disease. zman
Posted by lymewreck36 (Member # 4395) on :
Hi folks. It has been a few weeks since I first posted about my struggle, and thank you to you kind folks for the informative links. I have read through them and put them in my "file" of terrific information.
Now to an update with more questions. WE have discovered that I have pelvic floor prolapse of two kinds, bowel and bladder, and I am sceduled for surgery on the 16th of this month.
I am also taking 60 mg of morphine twice a day for pain relief, and wearing lidocain patches on my low back in an effort to function, and still am in tears with the pain.
My GYN tells me that this kind of pain cannot come from pelvic floor prolapse.
As I said, I have been tested for all autoimmune illness and they are negative. I had scoping and a CT scan with imaging. Normal, except the sigmoid scoping revealed bowel inflammation and stamach inflammation as well.
I have searched "hernia" on the internet and found a set of symptoms that are an exact match for what I am going through, along with "reactive arthritis" that is part of the hernia package.
I have been told that female prolapse does not include these "hernia" symptoms, but I have them and that is not arguable.
I have to believe that I have a hernia not detected, internally, because my symptoms cry out this truth.
The medical community is not treating me as a surgical emergency.
What kind of doctor would I need to see about internal hernia, and when my GYN does the prolapse surgery vaginally, will she be able to see if there is a internal rectal hernia? I have to ask her this question.
Is there someone out there with a similar experience and wisdom to share?
S.O.S.
mary
Posted by D Bergy (Member # 9984) on :
I had much abdominal pain due to H pylori and a stricture in my small intestine. Both have since been resolved.
What helped me the most with the pain was Ginger. I used the raw root you can find in the grocery store and later I used capsules due to the nasty taste. Ginger is antibacterial as far as bad bacteria is concerned and actually promotes good bacteria growth in your stomach. Numerous other benefits also, too many to list here.
As a precaution, I would not take Ginger at the same time as your antibiotics, or other medications as it does help absorbtion of vitamins and minerals. It could theoretically magnify the absorbtion of prescriptions also. I have never heard of this happening but better to be on the safe side.
I hope this helps.
D Bergy
Posted by Moosie (Member # 10033) on :
Very familiar with intestinal problems. I'm short about 15 inches of my colon as a result.
I have no allergies, no Chrons', no Hpylori, no anything. Just inflammation, resolving inflammation and in June of 2005, a 6 inch diameter blow out in my sigmoid colon. It was labeled diverticulitis/perforrated.
I was on antibiotics from June 2005 through September of 2005 to get me ready for surgery. I remained on antibiotics for several months after the surgery.
When I was first put on IV Flagyl and Cipro in the hospital during the initial hospitalization, I had what I'm certain was a serious herx reaction. No one at the hospital could understand why I was so ill. I should have been getting better. After 8 days I did, and remained feeling well until about a month or so after I stopped the oral antibiotics about three months after my surgery.
Diverticulitis, my eye.
I have a very close friend who just went through the very same scenario - months and months of going down hill, being tested for everything on earth, being told she had CFS (I got Fibromyalgia and "it's just IBS" as my catchall. . .), put on pain pills, put on antidepressants, blah, blah, blah - she just gave up 18 inches of her colon. Poor baby also went into anaphylaxis on the operating table. . .
I'm not trying to be scary here. I just know that I kept saying there was something wrong with my insides. Nothing happened in the way of effective help until I went into the ER that day with a temperature of 105.2 and a perforrated bowel. Same thing for my friend.
I know you had that done and I'm very happy to hear they didn't find any holes - yet. But if your symptoms don't resolve, insist on repeats of a colonoscopy. Insist on a CT scan with contrast.
What had been called IBS for about 15 months was diagnosed in about 35 minutes by a CT scan.
Take care and I hope you figure it out. I hope we all figure it out. Moosie
Posted by Anneke (Member # 7939) on :
There is a great medication called Ketotifen that effectively reduces inflammation in the gut. It needs to be compounded. It is an old medication that traditionally was used in eye drop form for those with eye irritation from allergies. It is an anti-histamine. Those with celiac and other irritable bowel issues are getting relief from the medication.
It can be ordered from a compounding pharmacy in Washington state called Clark's Pharmacy with a prescription. The dosing is usually 6 mg. a day.
I have gluten intolerance and other food allergies, and this medication has really really helped me! No more bloating and pain.
Good luck Anneke
Posted by Aniek (Member # 5374) on :
Mary,
It's very possible that the reason the pain is so intense is because of the Lyme. Lyme can create a heightened sense of pain as part of the fibromyalgia type symptoms.
People with fibromyalgia in some ways have a higher pain tolerance, because they are so used to pain. But they also have more severe pain from triggers that cause pain.
I have something going on with my gallbladder and pancrease. The pain refers to many more places than is typical. Instead of stopping at the shoulder, my gums and hands hurt. I'm sure it's because of the Lyme.
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