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» LymeNet Flash » Questions and Discussion » Medical Questions » Reached the end of my rope dealing with IC

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Author Topic: Reached the end of my rope dealing with IC
tricia386
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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  |  IP: Logged | Report this post to a Moderator
GretaM
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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.

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tricia386
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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  |  IP: Logged | Report this post to a Moderator
OtterJ
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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.

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tricia386
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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  |  IP: Logged | Report this post to a Moderator
Ellen101
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How about your diet..I just read about how high oxalate foods can negatively affect us. http://diet-sage.com/health-news/why-you-should-not-eat-too-much-spinach

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.

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tricia386
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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  |  IP: Logged | Report this post to a Moderator
Lymetoo
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Take the D-Mannose twice a day.

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!

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tricia386
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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

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tricia386
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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

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Lymetoo
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Hmmm... Does she have any ideas to "fix" that?

--------------------
--Lymetutu--
Opinions, not medical advice!

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tricia386
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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

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Crawgir1
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Azo may help you, take a look at the different products they have: http://www.azoproducts.com/products
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Ronnie
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tricia

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.

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Lymetoo
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Vinegar will soothe sunburn.

--------------------
--Lymetutu--
Opinions, not medical advice!

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Dogsandcats
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Do you take an antihistamine or atarax?

--------------------
God will prepare everything for our perfect happiness in heaven, and if it takes my dog being there, I believe he'll be there.

Billy Graham

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OtterJ
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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.
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Lymetoo
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I'm not talking about ingesting vinegar.

Someone on another board said the low oxalate diet helped their V and IC.

--------------------
--Lymetutu--
Opinions, not medical advice!

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OtterJ
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Lyme too, I know what you meant, and agree with low oxalate diet.
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