tricia386
Frequent Contributor (1K+ posts)
Member # 29623
posted
Hello All-
Been dealing with IC like symptoms as well as red irritated vagina from urine.
I was doing very well in Aug and then BOOM out of nowhere this IC thing happened actually on my way to vacation.
All culture are negatibe. Expcept I did have broth from United Medical Labs and it said I was postive for Group Strep D. MY LLMD placed me on AMOX bc thats what the test said it was sensitive too.
Anyways after 10 days no change he said if it was grooup D strep I would have noticed a difference by now.
We are trying other ABX but the way this came on we do not feel it is lyme or coinfections at this point could be wrong.
He said we might have to do a cystoscope and do a biopsy to see whats in there....
Any thought??? would greatly be apperciated...
-------------------- 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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susank
Frequent Contributor (1K+ posts)
Member # 22150
posted
I am having trouble too - am thinking the toilet paper is causing some of it. Something to consider.
-------------------- Pos.Bb culture 2012 Labcorp - no bands ever Igenex - Neg. 4 times With overall bands: IGM 18,28,41,66 IND: 23-25,34,39 IGG 41,58 IND: 39 Bart H IGG 40 Posts: 1613 | From Texas | Registered: Aug 2009
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tricia386
Frequent Contributor (1K+ posts)
Member # 29623
posted
I have tried changing everything! Nothing works.
-------------------- 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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annxyzz
Frequent Contributor (1K+ posts)
Member # 20404
posted
This is helping me personally : aloe vera gel capsules ( now brand ) soothes mucous membranes glucosamine chondroitin- chewables from wal mart
Taking prelief tablets to neutralize acid foods ( ordered from amazon )
I read extensively at IC message boards and these things were advised by women who said they found IMPROVEMENT with them.
I have been using these for two months and starting to see results - far less discomfort . It is not instant , but I feel my bladder is starting to heal .
The glucosamine/ chondroitin helps rebuild mucous membranes all over the body , plus rebuilds cartilege in joints . It is a win win for the whole body . I felt better quickly with aloe vera gel capsules- noticed they were soothing pretty fast .
I take the Prelief tabs with acid foods like a cup of coffee .
I am also drinking much less diet soda and coffee, which are big irritants for me.
Just on a hunch , I am lowering my intake of oxalate foods . These are not all acidic , but I think the oxalates were contributing to my needlelike pain sensations in bladder and sometimes down my thighs and in pelvic region. I am a big believer in a high antioxidant diet, but I really think in my case the oxalates were too much . I am eating a bit less spinach, nuts , sweet potatoes and tomatoes .
You might look up Oxalates / vulvadynia / pain
Interstitial cystitis pain relief
Interstitial cystitis glucosamine
I hope these help you . I am starting to feel better after a few months of misery .
-------------------- annxyzz Posts: 1178 | From East Texas | Registered: May 2009
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Ellen101
Frequent Contributor (1K+ posts)
Member # 35432
posted
Have you tried an antifungal? I know on one of your other posts I replied to that I said I had similar symptoms several'yrs ago. My doc prescribed daily fluconazole for a month. How are your hormones? I was extremely low in estrogen which he prescribed for me as well.
Posts: 1748 | From United States | Registered: Dec 2011
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
Have you heard about D-Mannose? This seems to help many people with cystitis and interstitial cystitis.
posted
Everone I know who had a cystoscopy regrets it. Please research it thoroughly before you have that procedure.
I refused cystoscopy based on info I got from the ICA's web page. I read interviews of docs who specialize in IC.
What helped me get rid of approx. 90% of my IC symptoms was aggressive oral antibiotics with a Lyme specialist. Several different kinds at a time.
I hope this helps and that you are feeling better soon!
Posts: 74 | From Maryland | Registered: Dec 2008
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tricia386
Frequent Contributor (1K+ posts)
Member # 29623
posted
anxyzz-How did you symptoms come about? I have tried prelief and cystoprotek which has both the supplements you have mentioned neither of them have had any affect on me. I dont seem to have food senstivites. I am not really sure. This was never part of my symptomolgy in the begining infact in came on after 1.5 years of treatment and a light at the end of a the tunned very discouraged.
Ellen- I am on Nystatin and I did 3 weeks of Diflucan and nothing. I have not had my hormones checked I am only 26 and I hope my hormones are not low but I will ask my LLMD to do this.
Carol in PA- I have tried Dmannose as well as berberine infact the same brand Keebler and that had no inpact as well.
As you can see I am stumped as is my LLMD who is a very famous one.
All I know is that the bladder sympoms SI pain as well as vaginal irritation goes away with a cold. I have had 3 colds this year. MY LLMD cannot believe it! Its such a relief when I get one.
What is happening is for some reason my urine is acidic which irritating and drying out my vagina. This my be TMI but when I am ovulating the mucos acts a protectant and its actually verk alkaline that it sooths the irritated tissues.
Not really sure where to go with this..I just need relief....
I am engaged and to get married in 2014 and i dont want to live like this I will do ANYTHING!
I am so desperate
-------------------- 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 have found the following to help when nothing else will:
4 drops of tea tree oil in approx 1 oz of olive oil or jojoba oil applied to entire lower abdomen and pubic bone region EXTERNALLY am/pm daily.
I also will make a very small paste out of bentonite clay, maybe 1/8 of a teaspoon orally and chase it with water as well.
Femdopholis by Jarrow 3 caps 2x or more daily has also really helped me.
I know longer have this issue, thankfully and attribute these things to having helped along with treating for parasites as I believe wholeheartedly they play a central role in IC.
Good Luck & hope this helps.
Posts: 192 | From New England | Registered: May 2011
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Wow that is so strange about you feeling better with a cold! So with a cold comes mucus, ovulating-mucus.
Lyme hits the endocrine system hard. Even though you are 26, hormones could still be an issue for you. If your hormones are out of whack, it definitely can affect the mucus lining in your body.
I have the same doc and he's never tested my hormones, even though I've had issues. If you can't wait to see your LLMD, your PCP or a good OBGYN who does saliva testing can measure them for you (preferably the latter).
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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tricia386
Frequent Contributor (1K+ posts)
Member # 29623
posted
Ya I will have him run my hormones at the next appt.
I am just so confused...I feel like when I have a cold that my body goes and attacks the cold and stops fighting the infection in the bladder.
-------------------- 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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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
That's probably what it does (focus on the new invader--cold).
Have you tried taking some evening primrose oil? It won't 100% solve it, but could help.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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tricia386
Frequent Contributor (1K+ posts)
Member # 29623
posted
Yes I have tried it...I am about to try some Colostrum Bovine...kefir and Xylitol bc the Xylitol helps not allow bacteria to stick to the bladder....
So sad
-------------------- 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
PMs sent to tricia386 & susank with names of LL Nurse Practitioners who specialize in IC and tick-borne diseases.
If anyone else needs this information, I will gladly send it to you if you pm me.
Posts: 8981 | From Illinois | Registered: May 2006
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tricia386
Frequent Contributor (1K+ posts)
Member # 29623
posted
I will do anything to get well...just get rid of ic symptoms so sad and ruining my life.
-------------------- 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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annxyzz
Frequent Contributor (1K+ posts)
Member # 20404
posted
I never had urinary probs til menopause . Then I began having UTIs . They became less frequent when I decided to take hormones - lack of vaginal secretions make us very vulnerable. The infections would make me so ill. The pain was not so bad , but my immune system would go crazy fighting the bacteria and my fluish feeling was amplified exponentially .
This past winter I had a yeast , then UTI infection, then developed IC . I do think my high oxalate super nutrient style diet was a factor , plus I made a LONG 13 hr drive and swigged coffee and diet soda like an imbecile . After the trip was over, the bladder infection started , then it cleared up and VOILA , I was still hurting . It is IC - a new issue .
I started reading on message boards and began to distrust the treatments available thru docs . What seemed to work according to women who posted was glucosamine/ chondroitin / and aloe vera gel caps , along with low acid foods and beverages. If I had coffee or tomatoes ( I am a salsa and diet soda addict ) I would feel BAD .
My bladder was INFLAMED and I really think the lining was irritated or even had canker sores in it . That is what it felt like.
Very slowly , making changes it got better . I do not think this is related to lyme for me- more to age and hormones .
Another thing that has helped has been taking bromelain enzyme 2 times a day , along with quercetin , which quickly helped act against the overall inflammation. I think the inflammation is the source of pain. But the source of the inflammation may be diet / acid foods / too many oxalates / severe UTI infection/ severe FUNGAL infection - I had a YEAST and a BACTERIAL infection BOTH right before the IC started .
I think berberine can help sometimes because it is antibacterial and antifungal .
Probably the best things for me have been the daily glucosamine/ chondroitin , which helps rebuild linings of ALL (!) mucous membranes. I will nEVER stop taking this , because I think it will also help with Costochondritis ( my other HELL!) which is inflamed lining of lungs bronchial tubes and inflamed cartilege around the breast bone ( hurts like HELLLLLL) .
Honestly , I felt like I was constantly having either a bladder problem or a costochondritis bout . Both of these are irritataions of mucousal tissue , which may have thinned with age .
I would strongly advise the glucosamine , chondroitin , and aloe vera gel caps ( 3Xdaily at least)
Also , during my most miserable time I was desperate and bought some colloidal silver which really did seem to help . I took 2 tsp a day for two weeks. It can kill a lot of pathogens and is not goof ball science .
I think my pain is almost all gone because the glucosamine SLOWLY repaired the bladder lining and the silver probably killed any pathogens. The aloe vera capsules seemed soothing right away .
These have helped many other women who posted on message boards , but total relief is not instant because the lining of bladder takes a while to repair.
Another thing to consider is buying alkalyzing drops to add to liqiuds you drink. This alkalyzes your entire system and helps take acid out of urine . I think the PRELIEF does this for me.
Though the lyme is a daily battle, the bladder pain is now almost all gone now and it was getting nasty for a while.
Tricia, I hope this helps you . I am saying a prayer you will be led to the answer that will help YOU and that you will receive divine encouragement . Feeling horrible is a hard way to live and it colors literally everything in our lives - our perceptions of ourselves and our futures . I pray you start feeling better soon!
-------------------- annxyzz Posts: 1178 | From East Texas | Registered: May 2009
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tricia386
Frequent Contributor (1K+ posts)
Member # 29623
posted
Thank You so much. I am going to start using the prelief again and get some Glucosmine as well as Colostrum which is suppose to heal to..
How long did t take for you to noticei improvements,
Funny you mention silver I just started this Monday!
-------------------- 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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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
I too have fought the UTI for years. On abx, off abx, it was something I just couldn't control. With it I also experienced kidney/back pain almost daily.
I've nipped it in the bud quite by accident. I decided to try DE (diatomaceous earth food grade) after reading some of Gigi's threads.
Wanting to do some parasite cleaning? The first day of using DE I noticed my urine had that awful smell that my body was releasing something.
After a couple days the smell was gone. Then within a week I noticed I didn't have kidney/back pain. I was quite happy to finally find something to clean up my bladder and kidneys.
I originally ordered from Amazon a 1 lb. jar. It lasted me about 5 weeks and I decided to order the 5 lb bag to refill the jar. The jar sits on my kitchen counter with all my daily meds & supps. It's easy for me to remember to mix in with my water 2 times daily.
They claim it also lowers cholestrol. I hope so because I need to get my cardio doc off my back about needing statins. Four heart meds is enough.
After doing some reading I decided to go with this DE product.
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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