tricia386
Frequent Contributor (1K+ posts)
Member # 29623
posted
Its been a year...no help from LLMD no help so depressed at the end of my rope already have been working with NP RK and just so depressed dont know where to turn...no relief.....at my witsend. Vaginal tissue so inflammed burning urgency itiching awful awful awful
-------------------- 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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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Hi Tricia, Sorry to hear the IC has you in it's burning, irritating grip.
Honestly, d'mannose was the only thing that helped my IC. It took about 2 weeks for me to say, Lahhh, that's better, but it is worth the cost of the d'mannose.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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tricia386
Frequent Contributor (1K+ posts)
Member # 29623
posted
I already tried that Greta I will try it again. How much did u take?
-------------------- 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, have you been tested for urine ph? It makes a difference if you are too acid or too
basic. I haven't done this myself, but you can by test strips at medical supply stores to test your
urine. Once again, the only antibiotic that helped was CIPRO. Have they checked the ammonia
levels in your urine? I would go to a urologist lyme/bart be damned. Mine wasn't a rocket
scientist, but they could tell I was in pain. You may need a catheter urine sample and they are the
experts. Someone here on the boards recommended an herbal for too much ammonia, but I can't
remember what it was. I believe if you have to much ammonia you are too acid.
Posts: 482 | From Oregon | Registered: Feb 2011
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tricia386
Frequent Contributor (1K+ posts)
Member # 29623
posted
My urine feels like acid. I have been to 2 urologists and had a cystoscope and they saw nothing and they said it doesn't look like ic.
-------------------- 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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Ellen101
Frequent Contributor (1K+ posts)
Member # 35432
Have you had any food allergy testing done? If not it may be worth a shot.
I know you said you have tried LDN, but if I recall it was a very low dose and for a short period. LDN can have amazing results, but you do need to give it time to work and to build up to a higher dose. I have stopped and restarted it several times due to an increase in my pain. Now on ,my third time I have seen a big reduction in my symptoms.
In the past I responded to one of your posts as your symptoms seem very close to what I experienced several years ago, only mine was several months after a hysterectomy. I was so uncomfortable and in so much pain. I went to ER's, doctors, nobody could figure out what was wrong. I finally tried one more gyn on a recommendation. I cried my eyes out during the exam as it was so painful. In the end he ran a ton of cultures and the results were surprising as it was mega amounts of yeast. Not sure why it did not show up on any other testing.
He prescribed vaginal yeast meds along with a months worth of diflucan. On top of that he felt my estrogen being low was contributing to things. It took several weeks but I healed fully.
I know your situation is different as you have not had a hysterectomy, but has anyone checked your hormone levels?? I'm assuming they have prescribed vaginal yeast meds?? Not the OTC ones as they will not work.
Posts: 1748 | From United States | Registered: Dec 2011
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tricia386
Frequent Contributor (1K+ posts)
Member # 29623
posted
Only thing that every helped was rocphein. So confused . Don't know how much longer I can go on suppose to get married in may too.
-------------------- 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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Didn't you say you were taking Samento and it got worse? You need to really analyze what you are ingesting... food and meds.
I'm so sorry it is so painful!!!! Been there!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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tricia386
Frequent Contributor (1K+ posts)
Member # 29623
posted
I was grasping at straws i was on samento and banderol for awhile but thought maybe that was it.
I had no new change in meds abx or anything else. Rk thinks I opened up a biofilm and have a new infection
-------------------- 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
I am Im in so much pain. I went to a dermatologist she said that it looks like dermatitis on my vagina bc urine is irritating it so much does this make sense ??
-------------------- 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
Hmmm... Does she have any ideas to "fix" that?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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tricia386
Frequent Contributor (1K+ posts)
Member # 29623
posted
She said use Vaseline or Crisco
-------------------- 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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have had this problem on occasion.... thanks to the lyme. I had success with baths, essential oils, vinegar.... don't know why occasionally... it comes back though!ugh! I feel for you !!
-------------------- Ronnie. Posts: 4 | From Los Angeles | Registered: Jul 2013
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posted
Vinegar won't help if your urine is acid. If this is the case, don't ingest anything you wouldn't put on a paper cut!!!!!! I had to urinate and jump in the shower to wash off(no soap) to prevent the burn from my urine. Also, stay away from cranberries as well if you are too acid. Ask your treating doc what your ph level is in your urine. If they can't tell you, get it done.
Posts: 482 | From Oregon | Registered: Feb 2011
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