Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
Interstitial cystitis, AGAIN !
Crying. Wearing 3 lidocaine patches, prescribed meds, and OTC. Nothing will touch this pain.
Radiating down leg, sciatica nerve, lower back, lower front pelvis, up through spinal cord, intestines swelling.
Happened so fast this time. Was having good day.
But notice frequent urination, but I drink massive amounts of H2O.
Then I got chills that made the hairs of my legs stand.
Then the PAIN !!!!!!!!!
Up all night. In agony. Called doctor #5 on my speed dial, urologist, please get me in for treatment today.
Why won't office call me back.
This is wide spread sepsis through entire body.
Enough with bringing hand guns to the battle, I need bombs !
Posts: 2977 | From Florida | Registered: Nov 2016
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Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
Sorry to know that.
I had a last episode during Xmas too. Very painful.
It was Xmas, I was not at home, but far away. I didn't want to spoil the holidays.
I was in low caloric diet, only fruits, salads, then went out for more than 3 hours in the cold, no pause, and then, bladder infection!
I'm EXTREMELY skinny, and felt too cold.
Not eating, too cold too long, and my candida was on (= low immunity), so result was cystitis.
It had been some time I didn't get cystitis... but well....
My urine got cloudy in few hours (literally whitish). The pain to urinate, unbearable.
I was already on the WC, just to pee drops of wee, no way to hold it any longer than those few drops.
If you had suffered from cystitis as much as I had, you know in which infectious stage I was: the worst!
So I did a nosode from my urine, I guess it was dilution 3X to 6X. I took it many times, about 20 times in a day. Then symptoms slowly went down.
I continued diluting that same first sample, to about 12X in the next days, and well, no need to go to ER nor to take any antibiotic.
Usually, when the infection is very strong, nosodes works better than when infection is weak (because the urine is LOADED with pathogens)!!
It means, the remedy will be stronger, than when urine has less pathogens.
Weak infection nosodes work less well, in my experience, but that whitish urine worked perfectly!
If I were home, I wouldn't have ingested the drops, but photooned them instead. I was on vacations, no infrared device, so I had to drink the drops, which were ok (no taste, no color).
What was great was that pain reduced quite fast (not as fast as antibiotics though). In 24 hours, I could eat again (hungry again), and that 2nd night, I could sleep (1st night I had too much pain, that is when I decided to do the nosode).
If you want to try that, it is better than antibiotics one after another (for the gut, I mean).
And I was always afraid one day, my pathogens would get resistant to antibiotics, and I didn't want cystitis to set in (I hate cystitis).
There is no way for pathogens to get resistant to nosodes, as there is no 'killer' in it.
Posts: 6199 | From Brussels | Registered: Oct 2007
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
I hope your doctor called you back.
If you are ever concerned about sepsis, call 911 because you need taken to the hospital ASAP.
Sepsis is a severe life threatening infection of the blood.
Symptoms are rapidly rising high fever with sweats and chills.
Doctors will draw lots of blood cultures to find the exact cause of the sepsis infection and start you immediately on multiple very powerful IV broad spectrum antibiotics. You would be admitted to the ICU.
Bartenderbonnie, I hope that you can get started on an effective treatment for your Interstitial Cystitis flare soon. That way you will feel better in general and have relief of your pain.
Posts: 5237 | From here | Registered: Nov 2007
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posted
Wikipedia has a big article on it. If you haven't already done so, I suggest studying it. One of the things I do when confronted with a symptom is study the literature to see if some aspect of it is connected with Lyme disease symptoms.
And if so, I start experimenting with tweaking in that area, like trying supplements that might help that area.
Like I noticed in the article it mentioned mast cells. Just look for the clues that you think you might match, because something is triggering it.
Posts: 13116 | From San Francisco | Registered: May 2006
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
Sorry you are in pain. One simple remedy is baking soda in water. It changes the pH of your urine.
Some people do well with D-Mannose. Just some simple suggestions... Interstitial cystitis is a bit more advanced than a basic UTI.
posted
Did you take a look at the home remedies link Sparkle posted? Sometimes when we're waiting for the doctor to respond, it can be helpful to see whether any simple treatments can help alleviate symptoms.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
Be sure to go online to the IC sites and yes, check into the connection with MCAS.
My teaching career ended with IC .. then found out that Lyme caused it... then found out that MCAS was likely the REAL beginning.
So... check things out.
Also look into the connection with oxalates. Big issue there for IC.
If you really think you are septic, then you need to go to the ER. (Don't let them give you a fluoroquinolone)
I take D-Mannose twice a day and have not had an infection in 9 years. I have had one or two flares of IC since then.
I have low-level constant IC problems.. but nothing so bad that I can't stand it. Since going on cromolyn sodium for MCAS, the bladder pain is under control.
Keep searching for answers. It isn't always what you think it is.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
Brussels, I can't, in good conscience, drink urine nosode with my immune system non-existent. I don't know exactly what is invading my bladder but have a good idea.
I picked up d mannose but have only been on it 2 days, haven't had any change.
I called doctors office 4 times over 4 days. He faxed script for urine cultures, had it done. Test is back but his office closed on fridays so answering service said I had to wait till Monday..
Go to emergency if pain is bad. Yeah, like I m gonna do that.
I have been his patient for 5 years. He has always done treatments on me in his office. I thought we had a good patient-doctor relationship.
The only thing that has changed, is that I told him 2 months ago that I was getting treated for Lyme.
Main stream doctors seem to think the Lyme doctors are treating for all infections. Such as sinus infections, bronchitis, heart infections, stomach infections, ect,ect.
LLMD s treat only TBI's. They don't take insurance or fill out paperwork. That's why we have so many different doctors. There s no communication, no ones on the same page. No ones in unison in working to get us well.
My last urine culture had red blood cells, immflammatory cells, mast cells, and squamous cells. Don't know why.
My urologist actually took a few minutes to teach me breathing exercises to "get rid of my Lyme".
Poor misinformed smuck. But I thought it was nice anyway. Like putting a bandaid on a gunshot wound.
On day 6 on the most horrific pain.
Trying everything including the kitchen sink.
Posts: 2977 | From Florida | Registered: Nov 2016
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posted
I'm so sorry. I do not know the answers to your questions. But I feel for you! Emergency rooms are a hit and miss in my experience. Bad and good.
If you are in more pain than you can handle,I would call your on-call dr. And gof from there...so so sorry.
Posts: 798 | From Cincinnati, OH | Registered: Jul 2016
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
Thanks HW.
I don't want to go to ER and they have to call in the on call urologist on super bowl Sunday.
I don't know what to do
Posts: 2977 | From Florida | Registered: Nov 2016
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posted
The ER will be fairly empty right now ... just thinking ahead for you.
You can't let an infection go on and on.....
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
I've got an idea for you.
I had bladder pain for months and months taking endless abx.
Doc took me off abx and put me on diflucan; blessed peace within 48 hours, but it calmed down a lot in six.
Before you're absolutely sure it's a bladder infection and not a raging yeast infection go get some yogurt and see if that helps. It won't help much but at least you'll know. They won't be able to tell the difference in an ER.
Posts: 2057 | From Florida | Registered: Feb 2015
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
The ER would be able to access my recent urine cultures. Had them done 4 days ago.
Trying to wait out 12 hours till doctors office opens.
There s only so much my body can take.
Posts: 2977 | From Florida | Registered: Nov 2016
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
Answering service got in touch with on call doc.
He told me to go to ER.
I asked if ER would would give me cathedeter treatment. He said they would not.
Told me to wait till tomorrow and go to office for treatment.
Only good thing that came out of that, is that it's documented.
Posts: 2977 | From Florida | Registered: Nov 2016
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
Finally got treatment.
Pain is gone.
Savor the moment. Posts: 2977 | From Florida | Registered: Nov 2016
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
Update :
Treatment was temporary, pain came roaring back 4 hours later. Are you kidding me ?
It's groundhog week, same as last week. Stuck with killer pain over the weekend again.
Urologist said to check with pharmacy 1 hour after my office visit on Monday. He said he call in lidocaine suppositories.
I believe I learned in 5th grade science class that a woman pees through urethra, not vagina, but who cares, right?
So I go to pharmacy and of coarse, doctor didn't call in anything yet. Went home and waited till next day.
Still waiting 6 days later. Pharmacy says nothing was sent. Doctors office says they did. Don't know who s telling the truth.
Just called pharmacy again this morning. They finally recieved script but it needs insurance approval.
If I pay cash - 125.00. Don't have the money.
At least I was smart enough to set up weekly treatment appointment. Somehow manage till Monday.
I have read a lot of Lyme patients suffer from IC. But the research doesn't suggest borreilia is prevelant in bladder.
Maybe this is because standard urine cultures don't test for it?
It is my opinion that it is absolutely Lyme related. My cultures showed immflammatory cells, red blood cells, and mast cells. All are markers of Lyme infection.
I went through my box of tricks and found 100 mg of gabapentin. Started taking 1 every 4 hours and it is helping.
I also bought menthol patches because they were cheaper than lidocaine patches. They also work but I walk around smelling like a stick of gum.
I wish I could turn the clock ahead so that it is Monday morning.
Or turn the clock back to before Lyme. . .
Posts: 2977 | From Florida | Registered: Nov 2016
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posted
Interesting that the Gaba helps. I take 100 mg morning and night but mine is for diabetic neuropathic pain.
We talked with Silver's PCP about Gaba and he wasn't too much in favor of it.
With all the menthol smell, just tell people you love to use Vicks!
-------------------- I still have a good time wherever I go! Posts: 138 | From Lost Wages | Registered: Oct 2016
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
Hey TrekCoord, I think Silver would do well on gabapentin.
I am so impressed with it that I m gonna mention it to my urologist. He told me that nothing really works for bladder pain. That's when I asked him for prescription lidocaine patches.
My neurologist gave me gabapentin 100 mg last summer. But he also gave me a starter package, which was a cardboard folder with each day's dose encased in plastic.
1st day dose started at 300 mg. 2nd day dose was 600 mg. 3 rd day dose 900 mg.
He said not too worry about high dosage, as its unheard of over dosing on gabapentin. He wanted me on 1200mg a day.
I only lasted till day 3 and never took them again. Too strong, made me a zombie, tired, dizzy.
But the 100 mg is perfect. Takes the edge off of pain. You can control dosage. Relaxes muscles, spasms,pain, and even anxiety.
Less pain, less worries.
Who knew I had them this whole time ?
Posts: 2977 | From Florida | Registered: Nov 2016
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Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
Hi <<<<< BartenderB' >>>>>,
Hope you are starting to feel better!
TrekC',and I both have wondered if Gabapentin would help me. I think my PCP is worried about allergies, and sensitivity to it. I have allergies. in-tolerances, sensitivities, to a lot of meds,and some foods.
I'd still like a chance to try it tho', hopefully it will continue to help you. I was surprised Doc' didn't want me to try it.
I've wondered if it wouldn't ease some of my headache issues and pain. And if it helped w/ IC that'd be fantastic.
I can identify w/ your struggles w/ Tinnitus as well. Mine doesn't go away, I listen to a variety of music and such, but with MES...
sometimes the Tinnitus noise, hyperacusis, and off balance feelings are overwhelming. I'll be trying to concentrate on a song, and the MES wont clear,
so two or three songs,or phrases of songs will repeat, while I am trying to listen to the music I like. it is very frustrating. I am hearing impaired now,
and I wonder if sometimes I have a glazed over far away stare. I'm sorta floating along, but it isn't comfortable. It is discordant, and annoying. I believe it sets up fight or flight feelings.
The Lord, and my TrekCoord-Hubby keep me on balance. We've been remembering you with in our LymeNet family and many others here,in prayer. This mess is no picnic,But we still fight on!!!
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
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