Topic: For those of you who have/had IC....need some help
tricia386
Frequent Contributor (1K+ posts)
Member # 29623
posted
My LLMD said I could possibly have IC. I am wondering what your symptoms were and how were you DX'ed.
And if it went away what treatment got it there?
-------------------- Lyme activated in April 2010 by gardasil vaccine. DX: Lyme,Babs,Myco,Bart 11/10 Treatment Started: 3/28/11 Posts: 1752 | From Albany, NY | Registered: Dec 2010
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
Mine was related to lyme and with lyme treatment it gets better.
Posts: 2888 | From USA | Registered: Mar 2004
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tricia386
Frequent Contributor (1K+ posts)
Member # 29623
posted
Hey poppy-
What were your symptoms
-------------------- Lyme activated in April 2010 by gardasil vaccine. DX: Lyme,Babs,Myco,Bart 11/10 Treatment Started: 3/28/11 Posts: 1752 | From Albany, NY | Registered: Dec 2010
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
Urinary frequency, indequate emptying.
And this can sometimes lead to urinary tract infections, apart from lyme, because the bladder stays partly full.
IC is just another one of those situations where symptoms are grouped and given a name, but no cause is determined. And it is bladder wall inflammation related. As you know, infection causes inflammation. Also, lyme is well known to affect the bladder. Neurolyme affects the nerves that control the bladder.
Posts: 2888 | From USA | Registered: Mar 2004
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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tricia386
Frequent Contributor (1K+ posts)
Member # 29623
posted
Thanks everyone. I still only pee like 7 times and it doesnt hurt when I pee. But I have lots of bladder pressure and pain and feel very very bloated
-------------------- Lyme activated in April 2010 by gardasil vaccine. DX: Lyme,Babs,Myco,Bart 11/10 Treatment Started: 3/28/11 Posts: 1752 | From Albany, NY | Registered: Dec 2010
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posted
Tricia, Those were my symptoms as well. I had a very severe case--on a scale of 9 to 10, the doc said I was a 9. He wanted to put me on DMSO and I ran out of that office and went back only once when I was better. He was amazed but didn't endorse my treatment of Chinese herbs, acupuncture and an alkaline diet. I don't know what the herbs were as they were mixed by a chinese herbologist and I cooked them and drank the juice everyday. In order to get well, you need to drink water that has a somewhat high PH. I found that the Sam's Club water at Walmart is inexpensive and alkaline. Ten years later this is all I drink. Hope you feel better soon.
Posts: 123 | From Montana | Registered: May 2009
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
What symptoms do parasites cause in the urinary bladder?
Itching, burning or pain during urination; bedwetting and/or incontinency; blood or mucous in the urine; vaginal burning or itching; and urinary urgency.
What symptoms do parasites cause in the ovaries and/or uterus?
PMS, menstrual cramps or clots, other menstrual problems; irregular periods, skipped periods or no periods; hormone imbalance; headaches, grouchiness, irritability, mood swings; loss of sex drive; heavy bleeding; infertility and/or miscarriages; premature delivery, retarded babies or other special needs babies; endometriosis, blocked fallopian tubes; insomnia; smelly and/or discolored vaginal discharges; and vaginal itching.
Above all, schistosomiasis is a chronic disease. Many infections are subclinically symptomatic, with mild anemia and malnutrition being common in endemic areas. Acute schistosomiasis (Katayama's fever) may occur weeks after the initial infection, especially by S. mansoni and S. japonicum. Manifestations include:
Abdominal pain Cough Diarrhea Eosinophilia � extremely high eosinophil granulocyte (white blood cell) count. Fever Fatigue Hepatosplenomegaly � the enlargement of both the liver and the spleen. Hepatic schistosomiasis is the second most common cause of esophageal varices[3] worldwide. Genital sores � lesions that increase vulnerability to HIV infection. Lesions caused by schistosomiasis may continue to be a problem after control of the schistosomiasis infection itself. Early treatment, especially of children, which is relatively inexpensive, prevents formation of the sores.[4][5] Skin symptoms: At the start of infection, mild itching and a papular dermatitis of the feet and other parts after swimming in polluted streams containing cercariae.[6]:432 Occasionally central nervous system lesions occur: cerebral granulomatous disease may be caused by ectopic S. japonicum eggs in the brain, and granulomatous lesions around ectopic eggs in the spinal cord from S. mansoni and S. haematobium infections may result in a transverse myelitis with flaccid paraplegia.
Calcification of the bladder wall on a plain x-ray image of the pelvis, in a sub-Saharan man of 44 years old. This is due to urinary schistosomiasis.
Continuing infection may cause granulomatous reactions and fibrosis in the affected organs, which may result in manifestations that include:
Colonic polyposis with bloody diarrhea (Schistosoma mansoni mostly); Portal hypertension with hematemesis and splenomegaly (S. mansoni, S. japonicum); Cystitis and ureteritis (S. haematobium) with hematuria, which can progress to bladder cancer; Pulmonary hypertension (S. mansoni, S. japonicum, more rarely S. haematobium); Glomerulonephritis; and central nervous system lesions. Bladder cancer diagnosis and mortality are generally elevated in affected areas.
You or your child with a pinworm infection develops other symptoms.
Fever or abdominal pain may be a sign of complications of pinworm infection.
Redness, tenderness, or swelling in the genital area may be a sign of skin infection.
Itching in the genital area or vagina may be a sign of vaginal pinworm infection.
Pain when urinating, frequent or urgent urination, or lack of control of urination may be a sign of pinworm infection of the urinary tract.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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posted
The test for IC involves a bladder distension under anesthesia. Until you have that, you really DON'T KNOW.
Go to the sites above and read about the diet. It will help if that is what you have.
IC usually involves tons of pain 24/7 and no relief unless/until you pee. After you pee, the pain returns.
I hope you find out what is causing your pain.
PS ..my IC is 90% better following treatment for Lyme and babesia.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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tricia386
Frequent Contributor (1K+ posts)
Member # 29623
posted
I wish I knew what was going on I hate this
-------------------- Lyme activated in April 2010 by gardasil vaccine. DX: Lyme,Babs,Myco,Bart 11/10 Treatment Started: 3/28/11 Posts: 1752 | From Albany, NY | Registered: Dec 2010
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tricia386
Frequent Contributor (1K+ posts)
Member # 29623
posted
Would I be peeing out WBC with IC. I tested my urine today with an AZO strip and it came back postive for WBC very high.
-------------------- Lyme activated in April 2010 by gardasil vaccine. DX: Lyme,Babs,Myco,Bart 11/10 Treatment Started: 3/28/11 Posts: 1752 | From Albany, NY | Registered: Dec 2010
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tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
If there's WBC present I believe that means you have an infection. You better go to the doc for a pee test/culture. You don't want it to get to your kidneys. Are you running fever?
BTW, I had IC very bad in the beginning but it has improved with treatment.
Posts: 2541 | From Northeast | Registered: Jan 2008
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tricia386
Frequent Contributor (1K+ posts)
Member # 29623
posted
I know its just so strange. I was doing so well in treatment for about the last months. Beenin treatment about 15 months and boom...out of nowhere
-------------------- Lyme activated in April 2010 by gardasil vaccine. DX: Lyme,Babs,Myco,Bart 11/10 Treatment Started: 3/28/11 Posts: 1752 | From Albany, NY | Registered: Dec 2010
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posted
I was diagnosed with IC, cystitis, and "That's a garbage can diagnosis". I do know I had something terrible going on with my bladder. I was SICK with pain, nausea, brain fog and other symptoms. It came in waves. I found out what I ate or ingested had a lot to do with it. Also the environmental chemicals I was around. Once, I went to the public swimming pool and was so ill the next day. I am now sensitive to chlorine. Things that helped me were a totally alkaline diet, no liquid except water that was a low Ph and tons of it, enemas to keep my bowels empty helped a lot (tons of pain between bowels and bladder, somehow connected), better after I went on Nystatin and traded off to Diflucan. I gave up sugar, gluten, salt, and junk food. I did this for over 18 months. I am better, not well. I can now do blueberries, lemons, and green apples. Also, watch the minerals. I could not these earlier, but now can do real salt with minerals.
Posts: 620 | From Ks | Registered: Oct 2011
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posted
I was diagnosed with IC, cystitis, and "That's a garbage can diagnosis". I do know I had something terrible going on with my bladder. I was SICK with pain, nausea, brain fog and other symptoms. It came in waves. I found out what I ate or ingested had a lot to do with it. Also the environmental chemicals I was around. Once, I went to the public swimming pool and was so ill the next day. I am now sensitive to chlorine. Things that helped me were a totally alkaline diet, no liquid except water that was a low Ph and tons of it, enemas to keep my bowels empty helped a lot (tons of pain between bowels and bladder, somehow connected), better after I went on Nystatin and traded off to Diflucan. I gave up sugar, gluten, salt, and junk food. I did this for over 18 months. I am better, not well. I can now do blueberries, lemons, and green apples. Also, watch the minerals. I could not these earlier, but now can do real salt with minerals.
Posts: 620 | From Ks | Registered: Oct 2011
| IP: Logged |
posted
I was diagnosed with IC, cystitis, and "That's a garbage can diagnosis". I do know I had something terrible going on with my bladder. I was SICK with pain, nausea, brain fog and other symptoms. It came in waves. I found out what I ate or ingested had a lot to do with it. Also the environmental chemicals I was around. Once, I went to the public swimming pool and was so ill the next day. I am now sensitive to chlorine. Things that helped me were a totally alkaline diet, no liquid except water that was a low Ph and tons of it, enemas to keep my bowels empty helped a lot (tons of pain between bowels and bladder, somehow connected), better after I went on Nystatin and traded off to Diflucan. I gave up sugar, gluten, salt, and junk food. I did this for over 18 months. I am better, not well. I can now do blueberries, lemons, and green apples. Also, watch the minerals. I could not these earlier, but now can do real salt with minerals.
Posts: 620 | From Ks | Registered: Oct 2011
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
It's good to check into everything. I'm no doctor by far... If you are interested in it possibly being parasites, it's pretty easy to "provoke a response".
You can take a good anti-parasite herbal protocol & see if it does anything. If you have them, it will probably make you feel worse & you may see things in the toilet.
I never in 1 million years thought I had parasites. I found out kind of by accident. It was hard to believe until I actually saw them...
You may want to try it at some point when you are feeling up to it. The tests aren't really accurate - so it's easier to just take the herbs & see what happens - in my opinion.
There are several good combos. Usually ones with green, black walnut hulls, cloves & some form of wormwood (or artemesia) are best. Parastroy is really good but it's strong stuff.
This way you could rule it out or in as per your response. Do it when you are ready for it becaasue the response can be overwhelming if you have them. If you don't - you probably won't get any response. It may take a few weeks to feel anything happen.
Just a suggestion. Lots of things can cause bladder or GYN problems. Hope you find something that helps. It's really awful going through this kind of pain.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
Also cranberry juice without sweetner (or as little as possible). Some people have differing responses to it. It can be too acidic for some.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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tricia386
Frequent Contributor (1K+ posts)
Member # 29623
posted
I have an appointment at my Urogyncologist on Thursday Hope I get some answers
-------------------- Lyme activated in April 2010 by gardasil vaccine. DX: Lyme,Babs,Myco,Bart 11/10 Treatment Started: 3/28/11 Posts: 1752 | From Albany, NY | Registered: Dec 2010
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