Topic: Here we go again-Interstitial Cystitis Part 2. Need Input
Bartenderbonnie
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Member # 49177
posted
Had to start new thread on I.C. journey.
Umm, well, scheduled to go to hospital on Thursday for outpatient procedure under general anesthesia.
I went for numbing treatment this morning. Instant relief.
But. . . Pain came roaring back 4 hours later.
Doctor decided I needed a cystoscope bladder distention.
Has anyone with Neuro Lyme ever had this done ? Will it make the ketes burrow deeper in bladder tissue ?
Should I have a PCR biopsy for Lyme done ? I am already clinically diagnosised and in treatment. But you all know how I am about documentation.
I m scared to get it done. Absolutely hate anesthesia !
Told loved ones, if I don't wake up, find comfort in knowing I am pain free.
Posts: 2977 | From Florida | Registered: Nov 2016
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TF
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Member # 14183
posted
Did you ever have this procedure before?
I had it when I was in my 20s for a bladder infection.
Believe me, I could hardly wait for them to give me the anesthesia. First, they filled up my bladder. Then, they told me to urinate on the x-ray table.
I couldn't and most people can't.
The pain with the full bladder was bad. They didn't stop putting fluid in my bladder when I told them I was full. I guess they really need to distend the bladder.
So, if they do that to you also, just hang on knowing that they will shortly anesthetize you and you won't feel pain anymore.
I really don't think it will cause lyme to go further into the bladder. It is just like having a very full bladder which can happen in life.
They can see everything in bladder and urinary tube with this test. So, it can tell them an awful lot.
I hope it helps them figure out how to treat you!
Posts: 9931 | From Maryland | Registered: Dec 2007
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Bartenderbonnie
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You gotta be kidding me.
Someone, please make this madness stop, damn.
Posts: 2977 | From Florida | Registered: Nov 2016
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posted
I'm not sure which procedure you are referring to. I had one that is therapeutic AND diagnostic for IC.
It HAD to be done under anesthesia. HAD to be.
The first time I had it done, it was therapeutic and I was better for about a year. The next time I had it done, it made me worse and I had to retire from teaching.
Neither time did I KNOW I had Lyme .. but I did.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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TF
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Member # 14183
posted
Perhaps you will be anesthetized right from the start. What they are doing to you is likely different from what they did to me. They were NOT looking for IC for me.
Here is what I found on the procedure you are going to have:
posted
Yep. That's the one. Since it's not even the gold standard for diagnosis anymore, I would not be willing to do that. And if you are already diagnosed .. then .. why?
Risk versus benefit ...
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Bartenderbonnie
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Member # 49177
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Thanks for the link TF.
I have already been diagnosed with IC. Doc is doing procedure to alleviate pain, and inspect.
Sorry Lymetutu.
I guess I m retired too, I just didn't know it.
Posts: 2977 | From Florida | Registered: Nov 2016
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Slight glitch. Blood pressure was 95 over 58. Waited 1/2 hour and it came up.
Anesthesiologist asked me if I was allergic to anything and I said yeah, pain.
She knocked me out before the doctor entered the operating room ! Thank you.
Doctor saw me in recovery. Said no cancer. Took pictures. Will explain everything at follow up office visit.
No pain. Haven't taken 1 pain med, no more lidocaine patches. No more crying. Best I ve felt in months ! Even vertigo and tinnitis is at minimum. Astonishing !
In pre-op, anesthesiologist was going over my medical history. Asked if I had heart problems, as my chart showed I had heart monitor in the summer.
It was that dreaded moment. . . Do I mention Lyme ?
Hey Tincup, I would have made you proud. Of coarse I mentioned Lyme !
As their time is valuable, I kept to the facts. Short sentences.
BB: It took me over 3 years and 19 docs to get diagnosised and treated. My story is the norm, not the exception.
Drug doc: That's because Lyme symptoms are vague, flu-like, chills, malaise.
BB: No, it's because Lyme western block testing is flawed. I had 5 tests all negative.
Drug doc: We have to go by tests because we are an evidence based society.
BB: But Lyme disease is a clinical based disease according to the C.D.C.
Drug doc: How did you know you had Lyme disease ?
BB: Unrelenting pain and fatigue, face numb, vertigo, couldn't talk, walk, no memory, spinal cord vibrations, paralysis.
Drug doc: well if you lived in Boston, or Connecticut, you would have been treated much faster.
BB: No infectious doctor will treat for Lyme unless you show positive western block, period ! I lived in a tick infested area(80% of ticks positive), pulled ticks off my dogs who also slept in my bed, had Neuro Lyme symptoms. But had negative test results. Clearly, the tests are flawed.
I Lyme educated 2 operating nurses, 2 student nursing students, an anesthesiologist,1 pre-op nurse, and 1 post-op nurse.
I talked until she put the mask over my face. I was talking through my mask. My last words were that Lyme destroyed my life as I once knew it, that Lyme is everywhere now, and to please show compassion to other Lyme sufferers.
All in all, it was a very productive day.
Posts: 2977 | From Florida | Registered: Nov 2016
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Catgirl
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posted
quote:Originally posted by Bartenderbonnie:
Drug doc: well if you lived in Boston, or Connecticut, you would have been treated much faster.
Bull. I saw a top ID doc in MA and the doc was completely clueless and denied I had it because the test said no. Bonnie, awesome you explained it so well to her (good job)!
Awesome you're pain free!
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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Bartenderbonnie
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posted
PAIN IS BACK. . . devastated
Posts: 2977 | From Florida | Registered: Nov 2016
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Bartenderbonnie
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Member # 49177
posted
Had another treatment in doc s office yesterday after only 1 week of hospital procedure that had failed.
Can anyone in God s green acres, please explain to me why a urologist would prescribe me an antihistamine for painful chronic IC ?
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Antihistamines work for IC for some people.
"Some patients report a decrease in interstitial cystitis (IC) symptoms using other antihistamines or medicines with antihistamine properties. Though the most widely used antihistamine to treat IC is hydroxyzine, some people with IC find relieve from Claritin, Benadryl, and Singulair."
posted
OH no .. so sorry to hear. Yes, an anti-histamine can help. What did he give you?
Have you tried Elmiron?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Here is another site that says antihistamines are part of IC treatment:
"Standard oral treatment includes Elmiron® which helps rebuild the protective layer of the bladder, an antihistamine and an antidepressant. The antihistamine (such as Zyrtec®) is used because biopsies in patients with IC show an increased number or Mast cells, which are a particular type of white blood cell that are attracted to the site of injury by histamine. The mast cells further increase the local inflammation and pain. The antihistamine blocks histamine release and decreases the attraction of the mast cells."
posted
So sorry to hear. IC ended my teaching career, needless to say.
What infusions are you talking about?
Have you been checked for mast cell disease?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
Shots of plasma are SCIG.
If I want, I can inject myself 4 times a week under skin very slowly.
It's called individualizations of care. Or otherwise, a crash course in nursing 101. Insurance companies cutting cost.
I haven't been tested for mast cell. Don't know the first thing about it.
Sending someone to Walmart for bladder relief.
Posts: 2977 | From Florida | Registered: Nov 2016
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Bartenderbonnie
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Although I am a bartender and have extensive experience in shots ! Posts: 2977 | From Florida | Registered: Nov 2016
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Bartenderbonnie
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O.k., broken record. . .
Lyme and company has invaded my brain...
And eyes
And spinal cord
And skin, collegen, muscles, tendons, joints
And cranial nerves V, VI, VII
And ears
And bladder
How can I describe the insurmountable suffering from IC ?
This is not living, just a slow death march.
Still fighting the invaders with aggressive treatment but with non-existant immune system, it seems futile.
Posts: 2977 | From Florida | Registered: Nov 2016
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posted
Have you tried very high doses of D-Mannose?
You can't overdose on it apparently...
For me, Bartonella treatment and D-Mannose beats back IC symptoms. D-Mannose helps to keep it in check. Are you treating Bartonella with antibiotics aggressively?
You could try applying oregano oil topically over your bladder region just for the heck of it too, you never know.
After a few years with my urologist and an IC specialist, and many many tests, I realized that Bartonella was wreaking havoc in there.
-------------------- unsure445 Posts: 824 | From northeast | Registered: Jun 2008
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Bartenderbonnie
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Sorry, been curled up in a ball all week, no let up of pain.
I tried d-mannose,, mashmellow root, black cohosh root, uristat relief, hydroxyzine, and gabapentin(works to relax muscles).
Had treatment this week called rim-shot or something.
It worked for 3 hours, then pain.
Been on website Animal Adventure Park in N.Y.. They are streaming live giraffe birth of April.
Trying to be thankful for the miraculous gift of life.
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