tricia386
Frequent Contributor (1K+ posts)
Member # 29623
posted
I AM AT MY WITSEND with this IC. I have an LLMD and an NP working on it. Been dealing for almost a year. The only thing that helps is a cold which makes it go away.
-------------------- 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 |
GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Hi Tricia, I sympathize with you.
In a nutshell, my bladder was so irritated I could feel when the urine left my ureters and entered into my bladder.
My urine cultures were negative, but the white cell count in my urine was high enough the emergency docs showed the numbers around to each other.
I was basically peeing blood and *gross* pus for 4 months.
I saw a uro, had every test and exam possible. He noted that my urethra was narrow, so perhaps urethral dilation would improve my IC symptoms.
The day of the procedure, I had one of my usual lyme fevers (hadn't been dx'd with lyme yet) and the anesthesiologist refused to put me under because of my fever.
I was sobbing and telling them the fever was from my bladder, and please help me. They sent me home. I went down to the ER, and they started me on Gentamycin IV.
On my way home, in desperation, I stopped in a health food store on my way to a bakery, (emotional eating-time for a cream puff), and I cried and told the herbalist my problem.
She recommended D-Mannose and Uva Ursi, taken on a schedule similar to abx.
Also recommended avoiding diet pop, cranberry juice and other acidic beverages.
Within 2 weeks my IC was history.
I think it was a combination of the gentamycin and the d'mannose.
I continued with a lower dose of d-mannose for a year afterwards.
So something to bring forward to your doc and ask if it is safe for you to take those herbs. From what I read online, d-mannose is fairly benign, but uva ursi is a diuretic, so it is best to take it under the supervision of your doctor, as other conditions can be aggravated by it.
And a big one for me is to continue staying away from diet pop and diet drinks. The aspartame irritates the lining of my bladder still.
I really, really hope that you find some relief soon for the IC irritation. It really is one of the worst feelings, and all my sympathies are with you.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
| IP: Logged |
Stay away from cranberry juice and anything acidic.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Otter- Battery acid! Great analogy! So true!
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
| IP: Logged |
tricia386
Frequent Contributor (1K+ posts)
Member # 29623
posted
That how my pee is. I am on so many abx, and others. I tried Dmannose awhile ago but I am going to try it again. Greta how much and how often did you take it.
All I know is it goes away with a cold. so it has to be something infectious.
-------------------- 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 |
tricia386
Frequent Contributor (1K+ posts)
Member # 29623
posted
Cipro is one drug I havent tried yet
-------------------- 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 |
GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
I was on cipro for IC as well. I can't recall exactly, but I believe it was 10 day scrips each time.
Just a head's up... it can cause tendon and ligament issues.
Either it, or the lyme or a combo of both did for me.
It didn't help for my IC, but it is a very good antibiotic for bladder infections. I'm surprised your docs haven't prescribed it for you yet.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
| IP: Logged |
I take two a day .. one in morning, one in evening.
Be careful of quinolones like cipro.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
RZR
Frequent Contributor (1K+ posts)
Member # 20953
posted
D-Mannose worked for me also! I use the powder made my Now. After feeling better, I took one scoop a day for a month or so.
Now, I only take one scoopful every other day for maintenance. My bladder was so bad before, I am afraid to stop the D-mannose.
-------------------- Tick bite May 2009 Diagnosed June 2009 Posts: 2329 | From SouthEast | Registered: Jun 2009
| IP: Logged |
tricia386
Frequent Contributor (1K+ posts)
Member # 29623
posted
how long till you noticed symptom relief from Dmannose?
I had issues with Levaquin my tendons got all tight we didnt know if it was a herx or a reaction so we stopped!
-------------------- 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 |
GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
My d-mannose dose was different.
For 4 days,
3-500mg capsules d-mannose 3 times/day.
Then for 10 days, 2-500mg capsules 3 times/day.
(Basically, like an abx scrip)
Then afterwards, 1-500mg capsule twice per day.
I made a mistake once of buying d-mannose with cranberry added... big mistake. Battery acid. I had to start the whole thing over again.
And I took the Uva Ursi as well for the first 14 days along with the d-mannose. (Some walk-in clinic doc along the way told me to 'drink a lot of liquids'. Well, I normally drink around 10 glasses of water per day... so I increased my water intake (following the docs instructions) and it slowed down my kidneys considerably). I was retaining water everywhere and the kidney pain was unbearable.) I believe this is why the herbalist subscribed the Uva.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
| IP: Logged |
posted
if you get worse from cranberry, try half a level teaspoon of bicarbonate in a glass of water, or half of that glass. That is what Larrian Gillespie wrote in her book about interstitial Cystitis there is a diet too, a short list
Posts: 366 | From Europe | Registered: Nov 2008
| IP: Logged |
posted
My mom had the same, the LEF folks put her on goldenseal caps, worked well for her.
Posts: 532 | From Texas | Registered: Oct 2004
| IP: Logged |
posted
I'm dealing with this too - 3rd UTI in several months, and I'm in my second trimester of pregnancy. I can't take the D-Mannose right now, and OBgyn wants to put me on Macrobid abx for the rest of the pregnancy (have taken it twice and it didn't work). I'm going to suggest a combo of other abx that can be taken during pregnancy - maybe Amoxi and Ceftin? Any other suggestions?
Posts: 29 | From Austin, TX | Registered: Apr 2009
| IP: Logged |
tricia386
Frequent Contributor (1K+ posts)
Member # 29623
posted
I had a broth culture done wish showed strep d. We tried the abx sensitive to it and nothing. I'm on. Septra zith amox and augmentin. Banderol and samento. Ivermectin and bouloke and serrapeptase. Biosil for cysts and ldn. Vitc and glucosmine and chondrotin and of course tons of probiotics and kefir. What am I missing?? Ugh
-------------------- 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 |
tricia386
Frequent Contributor (1K+ posts)
Member # 29623
posted
THIS ALL SUCKS, I would much rather deal with Lyme symptoms then IC. This is the worst my head goes in circles.
Parasites Protozan Myco Bart Lyme...
What is it!!?
-------------------- 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 |
Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Cipro helped, but the symptoms kept coming back. Parasite treatment got rid of it for me.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
| IP: Logged |
Ellen101
Frequent Contributor (1K+ posts)
Member # 35432
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I started LDN 3 weeks ago and (after an initial worsening of some symptoms - IC included - I see signs of improvement already.
Berberine also really helped me with IC but I had stopped that for a while and it got worse again. I may need both. Tricia, I know you have used Berberine but you might see about the brand from Tahoma clinic. I find that a better result.
tricia386
Frequent Contributor (1K+ posts)
Member # 29623
posted
I just started LDN again 1.5 I did try berberine for 1.5..
I mean it has to be an infection of some sort right??? I keep researching and researching and there are so many opinions and suggestions its hard to keep my head straight
-------------------- 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 |
posted
Remember, not all infections are cultured out when you go to the lab. It is important to get
the broth culture done. I used to get hideous pain due to lyme, bart, or protomyxoa, not sure
which, but because the doctor I was seeing was not culturing out these weird bugs, he couldn't
see anything in the urine. So, I would have bladder infection pain, excrutiating pain, but he
refused to provide any treatment. I'd have blood,pus, and casts from my kidneys, but the ass
said he wouldn't provide any drugs for an infection that wasn't there. I have the name of
a nurse practitioner who consults and specifically treats this type of problem. Send me
a pm and I will send you her name. Her initials are R.K. and a woman I know here in Oregon has
treated with her for this problem.
Posts: 482 | From Oregon | Registered: Feb 2011
| IP: Logged |
tricia386
Frequent Contributor (1K+ posts)
Member # 29623
posted
I am working with RK
-------------------- 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 |
Dogsandcats
Frequent Contributor (1K+ posts)
Member # 28544
posted
Has your doc suggested taking an antihistamine? I am also on atarax which is helpful to the bladder.
My doc has a procedures called "rescues", which are performed in his office. It kind of is like a bladder wash. Sad to say, I tried it twice with no response. But others consider it a lifesaver.
I have used the word battery acid to describe urinating. My bladder pain or pelvic pain is like being at 10 hours of labor with no meds- all day and all night. No letting up.
I am sorry you are experiencing this.
-------------------- 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 Posts: 1967 | From California | Registered: Oct 2010
| IP: Logged |
tricia386
Frequent Contributor (1K+ posts)
Member # 29623
posted
I got a broth culture and it said postive for strep D we did the ABX and nothing...what could this be??
-------------------- 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 |
Ellen101
Frequent Contributor (1K+ posts)
Member # 35432
posted
[QUOTE]Originally posted by tricia386: I just started LDN again 1.5 I did try berberine for 1.5..
I mean it has to be an infection of some sort right??? I keep researching and researching and there are so many opinions and suggestions its hard to keep my head straight [/Q
How long were you on the LDN before? Did it seem to help at all?
Posts: 1748 | From United States | Registered: Dec 2011
| IP: Logged |
tricia386
Frequent Contributor (1K+ posts)
Member # 29623
posted
I was only on 1 mg for like 2 weeks didn't notice anything
-------------------- 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 |
Ellen101
Frequent Contributor (1K+ posts)
Member # 35432
posted
1mg is a very low dose and that is why you probably didn't notice any changes.
Posts: 1748 | From United States | Registered: Dec 2011
| IP: Logged |
tricia386
Frequent Contributor (1K+ posts)
Member # 29623
posted
Im just so confused how this could literally happen over night
-------------------- 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 |
posted
This is my opinion, whatever infection from the tick has started inflammation, it sets us up for
random infections that we would normally shake off. I get e coli infections and weird staph. I
think its the inflammation, myself. I have read that lyme can cause blood blister type
irritations within the bladder. I have had a cystoscope and according to my doc, the bladder
looked normal. I have also seen a kidney specialist and urologist. To no avail. I have not
had this type of pain for a while, knock on wood, but when it happens, I hope there is a treatment
that will help. Like I said, I tried mannose powder, but it did not help.
Posts: 482 | From Oregon | Registered: Feb 2011
| IP: Logged |
tricia386
Frequent Contributor (1K+ posts)
Member # 29623
posted
I had that done too and it looked normal.
I mean I just worry I am not treating the right thing I guess.
Whats bizzare is this wasnt part of my orgincal symptoms it poped up 16 months into treatment
-------------------- 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 |
posted
I believe I developed IC about 8-9 months before my other lyme stuff showed up.. Actually now I think the IC was the start of the lyme.. I understand your anguish.. I wanted to throw myself off a bridge.. I was eating Desert Harvest Aloe pills like candy, using Pyridium taking Prelief tabs, no diet coke, no 5 hour energy and no vitamins.. It finally subsided after a couple months but I still can't take a multi-vitamin and some other supplements.
Posts: 30 | From Virginia | Registered: Jul 2013
| IP: Logged |
tricia386
Frequent Contributor (1K+ posts)
Member # 29623
posted
It's almost been a year . What do u think helped the most?
-------------------- 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 |
posted
I'm sorry you're going through this, it's time for a breakthrough! She claims most see improvement within 3-4 months.
I, too, got slammed with this pain after 2 years of treatment. 1st C-Diff & then IC almost immediately together. The pain of C-Diff was no fun, but this pain is unrelenting.
This past week my pain has doubled, nothing much touches it. Warm baths help while you're in there. Therapists also said squatting takes pressure off bladder (albeit tricky with stiff knees) or laying on your back with knees loosely up to your chest~letting your knees fall out as far as comfortable & breathe to raise lower abdomen.
Sounds weird, but at this point, I'll do it to relieve pain (heated beanie on side helps me but some prefer ice pack).
Feel better soon!
-------------------- Ecclesiastes 4:9-10 Two people are better off than one, for they can help each other succeed. If one person falls, the other can reach out and help. Posts: 338 | From NEPA | Registered: Mar 2011
| IP: Logged |
posted
For me diet was a significant factor.. B6 and Vitamin C from my understanding are big time bladder irritants.. I had to stop the multi-vitamin and B vitamin supplements..Omega's and green powder drinks also would irritate it and still do.. There are alot of supplements that I would love to take but I cannot because it will flare the IC. And no more soda.. I do believe the Desert Harvest Aloe pills really helped. I was taking like 8 a day and I would not hesitate to reorder them..
Posts: 30 | From Virginia | Registered: Jul 2013
| IP: Logged |
posted
I agree Stub, it was my first symptom that something wasn't right. I have gone through my life with no bladder infections, but within the first few months after the bite, I was having bladder pain. When I get this, just about every 30 days, a new pain/infection. The trick is to stay on an extended dose of Cipro, >5 days. The docs now do the zones of inhibition to see what drug attacks the infections they culture out, but initially I did not show infections. I wish I knew what made them (infections) go away because I suspect they may come back again, dammit. So, tricia, every 30 days for about 16-18 months and then it goes away. I don't know if this is helplful, but I got better. Also, try not to use public restrooms. If you have to, take a wipe and use several paper shields on the seat. I hate that the paper is sooo fragile and they buy the cheaper ones for the round toilets while the seat is for the elongated ones and it is a comedy to get your pants down before the paper drops into the toilet! There oughtta be a law!
Posts: 482 | From Oregon | Registered: Feb 2011
| IP: Logged |
tricia386
Frequent Contributor (1K+ posts)
Member # 29623
posted
I didnt culture anything out though. Only with a broth culture...and diet seems to have no affect on my bladder at all...I tried levaquin once and my tendons got so stiff but we didnt know if this was from a herx or side effects this was about 14 months ago so we stopped. I was getting so so so much better last Aug. I saw light at the tunnel after 18 months of treatment.
Then the day I left for my first vacation in 3 days I came down with this. Even though i did get engaged on vacation I wish I could have enjoyed it more.
-------------------- 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 |
Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
My Sister has IC (probably from Lyme), and she finds NingXia Red juice to be very, very helpful for her pain.
I got severe (200 on a scale of 1-10), stabbing bladder pain that radiated down both legs to my toes from an IV infusion of Vancomycin. I believe it was a herx. Benadryl helped enormously, so I second the idea of taking antihistamines...
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
| IP: Logged |
posted
I have been reading about mycoplasmas that culture the urinary tract and the difficulty in culturing them out and treatment. They will not show up in a broth culture and need a special type of agar SP4. Has R.K. considered this possibility?
Posts: 482 | From Oregon | Registered: Feb 2011
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic