tricia386
Frequent Contributor (1K+ posts)
Member # 29623
posted
Last AUG..I was well on my way to well or so I thought, I had improved greatly in Lyme treatment. Then I got struck with what is IC like symptoms.
My LLMD said usually ppl come in with those symptoms but dont develop them 1.5 years into treatment.
Anyways I haev seen 4 urogyncologist had a cystoscopy that came back negative.
I have cut out acidic food made no difference. I have been taking Chondrtion and Glucosmine for about a month now and no real improvent.
Had a broth Culture down and it came back with Strep D. I did about 2 months of AMOX and nothing
We have tried but only short courses 10 days DOXY ARGENTYN MAcrobid Septra Adernal Supplements.
Nothing seems to help.
It goes away when i have a cold, I mean completely away..
I have another appt on friday with a urogynocologist specialist that my LLMD recomended....
this is awful...I am wondering if i just hit another layer of lyme..
I have pain and prssure in bladder and pelvis back pain. Red irritated vagina from the urine.
-------------------- 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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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Have you tried antiparasitics?
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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posted
Absolutely false that symptoms cannot begin later in treatment. I had very minor symptoms (frequency) that started 7 months into treatment.
Full blown symptoms that started 2 years into treatment. I never had it daily though. It was a monthly flare up.
It was from Lyme and is now completely resolved.
I am shocked your llmd has told you that. I am really becoming disillusioned by llmd's. They need to admit they are pretty clueless.
-------------------- unsure445 Posts: 824 | From northeast | Registered: Jun 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- tricia,
were you able to get Berberine? That completely helped IC for me -- as long as I stay on it. I had tried everything else for years.
Just in case other women are dealing with irritation & pain in that whole region, I had no idea Berberine would help IC but was taking it for other reasons and after a few weeks noticed not just IC was gone but vulvodynia was much better - and nothing else was helping that, either.
Of course, what works for one person may not work for everyone and IC can have many causes. It's just that Berberine was such a surprise success for me but that it seems a likely helper for others to try. There is no down side to it for me but you can first read more if this seems a possibility for you.
[section] Carbohydrates Consumed by Lyme Spirochete
An effort to determine which carbohydrates Bb consumes revealed that the organism utilizes the monosaccharides glucose, mannose and N-acetylglucosamine, as well as the disaccharides maltose and chitobiose.
A popular treatment for arthritis includes the administration of chondroitin sulfate and N-acetylglucosamine.
If the arthritis is Lyme-induced, N-acetylglucosamine is contraindicated. 22 (See Chart 14.)
- Full article at link above. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I assume you drink no soda, carbonated beverages or, especially no drink or food with any artificial dyes or artificial sweeteners. Any of those can make IC much worse.
GREEN TEA can help in so many ways (although it still can call for frequent trips to the rest room, just like other teas). -
Posts: 48021 | From Tree House | Registered: Jul 2007
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tricia386
Frequent Contributor (1K+ posts)
Member # 29623
posted
I did try Berberine the brand you recomended too for about 2 months and I didnt have any inprovement...I guess I would be willing to try it again.
UNSURE what ABX did you use and how long did it take to resolve
-------------------- 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
If you are not noticing foods making it worse you do not need to avoid them.
Is there licorice in your adrenal supplement? Licorice is highly irritating to the bladder wall.
Vitamin C is very healing to the bladder wall. take at least 2000mg per day.
-------------------- unsure445 Posts: 824 | From northeast | Registered: Jun 2008
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tricia386
Frequent Contributor (1K+ posts)
Member # 29623
posted
Yes there is Licorice in it.
Any kind of Vit C?
What abx helped you?
-------------------- 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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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- tricia,
I did not use any antibiotics when the IC got better when taking Berberine. (No access to LL doctor - just trying to make my own way).
If you took the full amount for 2 months, that seems like a good amount of time. In my case, it was definitely better by the 2 month mark.
That's not to say another run at it might not do the trick but I'd be more comfortable if there were to be finally be a doctor who could actually solve this for you.
Sorry it's so rough. Wish I knew what else to suggest. Others' replies should bring to light other options.
If there are IC support groups and Vulvodynia support groups (even if you don't have that, what would that might help IC), you might check them out.
Parasites are very likely possibility, too. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Vitamin C?? I can't tolerate that AT ALL with my IC. I just pray I get enough of it in my diet!
Have you treated babesia?? My IC got WAY better following treatment for Lyme and babesia. Maybe it's the babesia you need to address??
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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tricia386
Frequent Contributor (1K+ posts)
Member # 29623
posted
yup did that treatment I have no babs symptoms left...I Have done it all babs bart myco lyme something isnt adding up...
any suggestions would greatly 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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-------------------- unsure445 Posts: 824 | From northeast | Registered: Jun 2008
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Ellen101
Frequent Contributor (1K+ posts)
Member # 35432
posted
Have you tried digestive enzymes? They need to be taken on an empty stomach to decrease inflammation. My oral surgeon recently recommended them t be used after I had a tooth pulled and I was amazed how all my joint pain was gone within days.
I stopped them 2 days ago for some stool testing and my pain has returned.
Posts: 1748 | From United States | Registered: Dec 2011
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
Tricia, have you tried d-mannose? A number of people here said that it helped Interstitial Cystitis.
posted
I second the D-Mannose!!! NOW brand from Swanson's Vitamins is very cheap!
and.. how about cortef?? Someone posted a study on the link with IC .. I've taken cortef for more than 10 yrs.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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tricia386
Frequent Contributor (1K+ posts)
Member # 29623
posted
Hey I did try d-mannose... For about a month
-------------------- 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
What about Lyme-literate nurse K in DC - anyone use her?
-------------------- 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 been dealing with this for months now. 3 different abx didn't touch it. D-mannose at the recommended dose of 1 tsp a day wasn't doing anything.
So I started using 4-6 teaspoons a day, mixed in throughout the day and finally I got relief. I added in a Vaginal probiotic that was recommened for vaginal and urinary tract for women. Tripled that recommended dosage too.
My kidneys are still not happy, so something is still lingering. I'm going to stay with D-monnase daily.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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tricia386
Frequent Contributor (1K+ posts)
Member # 29623
posted
Map how long did it take for you to feel relief?
-------------------- 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
2-3 days of urinating every 15-30 minutes. Finally the burn became less and less. I'm off to the health food store for another jar of D-mannose powder.
Odd thing was I wasn't waking up to urinate at night??? Another odd thing was it made my bowels move like never before. Maybe it was that probiotic?
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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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
It made my bowels move too soo much! I had such bad stomach aches....hmm maybe I should have stayed with it..
So you felt better in 2-3 days?
-------------------- 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
Tricia, I have prayed for you and will continue!
The glucosamine and chondroitin have made a huge difference for me ! It did take a few months though - not fast to rebuild lining of bladder . The other benefit is that I am much more limber and also my dry , brittle hair texture is noticeably improved . Don't stop the glucosamine !
I also take 3 capsules of NOW aloe vera GEL concentrate twice a day and it really soothes my bladder a great deal.
One more idea. When I started having this problem I read that lyme people often are zinc deficient and that zinc is critical for speeding wound healing. I am guessing it helped.
You might investigate the possibility that you are eating too many oxalates and try to go low oxalate for a few months. I did . Now I am much better and just take : zinc, prelief with coffee , avoid acids, take glucosamine/ chondroitin ( Sun valley chews that taste heavenly ) and also take aloe vera CAPSULES two times a day . I am much better .
I will keep you in my prayers and ask you get some divine direction soon and encouragement . It is torture for sure . Blessings to you for HEALING!!
-------------------- annxyzz Posts: 1178 | From East Texas | Registered: May 2009
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annxyzz
Frequent Contributor (1K+ posts)
Member # 20404
posted
I do not think my IC is related to LYME . The message boards I went to advised strongly the glucosamin and aloe vera , and I would encourage anyone else here to try it . It is not a quick fix , but at least I am also more limber and my hair looks better . Also , I am having LESS of a battle with COSTOCHONDRITIS ( HELL ON EARTH ) ! The glucosamine helps rebuild and strengthen ALL mucous membranes , including the chest area ! I think it has helped as I am not constantly feeling soreness and pain in chest are from inflammation .
Tricia, if I were guessing I would doubt that your problem is an infection, esp after ABX and Silver . I think the inflammation is coming from another source . Do read about oxalates in the diet .
Hang in there !
-------------------- annxyzz Posts: 1178 | From East Texas | Registered: May 2009
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posted
I have had IC symptoms all along, on and off over 5 years of treatment, so I understand what you are feeling.
My LLMD, says this can happen as you go through treatment, and the longer you have been infected, the more places in the body it will flare.
Lyme loves the bladder and the brain.
How much Vit C are you taking? Be careful with that. It's a real bladder irritant for people like us.
Vit C is helpful to us in many ways, but if it's causing you IC symptoms, I would back it off.
I just take a regular multivitamin.
-------------------- "Yeah, I miss me too." Posts: 234 | From NY originally registered in 2008 | Registered: Nov 2012
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
tricia, better meant the god awful burning, like I had a match on my urethra, was relieved. I still had pressure and freq problems for 7-10 days.
I've never had such pain experienced in one little area in this 13+ yr experience. I went back and searched myself and sure enough going back to '06, I was on here with UTI stuff.
It's been off and on problem for years. I've always been able to use my rife machine to kill off the UTI stuff. Not this time.
This time I brought this on myself. I did something so STUPID. On our anniversary in Oct we went to a casino and spent the night. I agreed to a jetted tub. I know better too.
Cultures kept coming back e-coli but I know there was some other bacteria involved. When you have a weaken immune system like us it could be any number of them in charge of the urinary region.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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