LymeNet Home LymeNet Home Page LymeNet Flash Discussion LymeNet Support Group Database LymeNet Literature Library LymeNet Legal Resources LymeNet Medical & Scientific Abstract Database LymeNet Newsletter Home Page LymeNet Recommended Books LymeNet Tick Pictures Search The LymeNet Site LymeNet Links LymeNet Frequently Asked Questions About The Lyme Disease Network LymeNet Menu

LymeNet on Facebook

LymeNet on Twitter



Tax deductible

The Lyme Disease Network receives a commission from Amazon.com for each purchase originating from this site.

When purchasing from Amazon.com, please
click here first.

Thank you.

LymeNet Flash Discussion
Dedicated to the Bachmann Family

2016 LymeNet fund drive


The Lyme Disease Network is a non-profit organization funded by individual donations.
In the United States, your donations are tax deductible.

LymeNet Flash Post New Topic  New Poll  Post A Reply
my profile | directory login | register | search | faq | forum home

  next oldest topic   next newest topic
» LymeNet Flash » Questions and Discussion » Medical Questions » Here we go again-Interstitial Cystitis Part 2. Need Input

 - UBBFriend: Email this page to someone!    
Author Topic: Here we go again-Interstitial Cystitis Part 2. Need Input
Bartenderbonnie
LymeNet Contributor
Member # 49177

Icon 1 posted      Profile for Bartenderbonnie     Send New Private Message       Edit/Delete Post   Reply With Quote 
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: 409 | From Florida | Registered: Nov 2016  |  IP: Logged | Report this post to a Moderator
TF
Frequent Contributor (5K+ posts)
Member # 14183

Icon 1 posted      Profile for TF     Send New Private Message       Edit/Delete Post   Reply With Quote 
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: 9628 | From Maryland | Registered: Dec 2007  |  IP: Logged | Report this post to a Moderator
Bartenderbonnie
LymeNet Contributor
Member # 49177

Icon 1 posted      Profile for Bartenderbonnie     Send New Private Message       Edit/Delete Post   Reply With Quote 
You gotta be kidding me.

Someone, please make this madness stop, damn.

Posts: 409 | From Florida | Registered: Nov 2016  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
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.

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

Posts: 91012 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
TF
Frequent Contributor (5K+ posts)
Member # 14183

Icon 1 posted      Profile for TF     Send New Private Message       Edit/Delete Post   Reply With Quote 
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:

http://www.ichelp.org/diagnosis-treatment/diagnosis-of-ic/cystoscopy-with-hydrodistention/

Notice that it says: "You will not feel any pain during the procedure."

Posts: 9628 | From Maryland | Registered: Dec 2007  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
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 ...

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

Posts: 91012 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
Bartenderbonnie
LymeNet Contributor
Member # 49177

Icon 1 posted      Profile for Bartenderbonnie     Send New Private Message       Edit/Delete Post   Reply With Quote 
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: 409 | From Florida | Registered: Nov 2016  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
Good luck. I'm glad I'm not you.

[group hug]

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

Posts: 91012 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
Bartenderbonnie
LymeNet Contributor
Member # 49177

Icon 1 posted      Profile for Bartenderbonnie     Send New Private Message       Edit/Delete Post   Reply With Quote 
Whoa, yowlzii, riding the pain train.

Mamma Mia, Holely tomolely.

Called LLMD. Took me off all Lyme meds.

I m way to stubborn to let this beat me.

Anesthesiologist better not pull an all-nighter.

This too shall pass. . .

Posts: 409 | From Florida | Registered: Nov 2016  |  IP: Logged | Report this post to a Moderator
Bartenderbonnie
LymeNet Contributor
Member # 49177

Icon 1 posted      Profile for Bartenderbonnie     Send New Private Message       Edit/Delete Post   Reply With Quote 
Finally pain free ! Bladder distention successfull !

Checked in hospital 7am, home at 12pm.

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: 409 | From Florida | Registered: Nov 2016  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
*western blot*

I can't believe you didn't have any pain from that. I was in excruciating pain for probably a week.

Hats off to you, Lyme Warrior!

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

Posts: 91012 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
lookup
LymeNet Contributor
Member # 44574

Icon 1 posted      Profile for lookup     Send New Private Message       Edit/Delete Post   Reply With Quote 
That's fantastic Bartenderbonnie! (pain free and educating everyone in site!) [woohoo]
Posts: 660 | From Northwest | Registered: Sep 2014  |  IP: Logged | Report this post to a Moderator
lookup
LymeNet Contributor
Member # 44574

Icon 1 posted      Profile for lookup     Send New Private Message       Edit/Delete Post   Reply With Quote 
quote:
Originally posted by lookup:
That's fantastic Bartenderbonnie! (pain free and educating everyone in sight!) [woohoo]


Posts: 660 | From Northwest | Registered: Sep 2014  |  IP: Logged | Report this post to a Moderator
Bartenderbonnie
LymeNet Contributor
Member # 49177

Icon 1 posted      Profile for Bartenderbonnie     Send New Private Message       Edit/Delete Post   Reply With Quote 
Thanks lookup.

You would have done the same.

Strength in numbers baby. [group hug]

Posts: 409 | From Florida | Registered: Nov 2016  |  IP: Logged | Report this post to a Moderator
lookup
LymeNet Contributor
Member # 44574

Icon 1 posted      Profile for lookup     Send New Private Message       Edit/Delete Post   Reply With Quote 
That's right! Strength in numbers! [group hug]
Posts: 660 | From Northwest | Registered: Sep 2014  |  IP: Logged | Report this post to a Moderator
Tincup
Honored Contributor (10K+ posts)
Member # 5829

Icon 1 posted      Profile for Tincup         Edit/Delete Post   Reply With Quote 
Ah ha! Just saw this post.

Yes, I am proud of you. Good girl! And I am so sorry for all you went thru, but glad you feel better now!!!

And you made me laugh. Your descriptions are always such that I can often "see" what you are talking about.

You said... "I talked until she put the mask over my face. I was talking through my mask."

THAT made me laugh. I can picture you doing that. And you did a grand job at educating so many too!

Just a tip for next time... for your own safety...

You might wait till the procedure is over before Lyme blasting them as good as you did!

Lucky you though, you got thru it with flying colors!

Congratulations! Keep up the good work!

[group hug]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.FloridaLyme.org
www.VirginiaLyme.org
www.MarylandLyme.org
www.WashingtonDCLyme.com

Posts: 18928 | From The Moon | Registered: Jun 2004  |  IP: Logged | Report this post to a Moderator
Catgirl
Frequent Contributor (5K+ posts)
Member # 31149

Icon 1 posted      Profile for Catgirl     Send New Private Message       Edit/Delete Post   Reply With Quote 
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! [Smile]

--------------------
--Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together).

Posts: 5392 | From earth | Registered: Mar 2011  |  IP: Logged | Report this post to a Moderator
Bartenderbonnie
LymeNet Contributor
Member # 49177

Icon 1 posted      Profile for Bartenderbonnie     Send New Private Message       Edit/Delete Post   Reply With Quote 
PAIN IS BACK. . . devastated
Posts: 409 | From Florida | Registered: Nov 2016  |  IP: Logged | Report this post to a Moderator
Bartenderbonnie
LymeNet Contributor
Member # 49177

Icon 1 posted      Profile for Bartenderbonnie     Send New Private Message       Edit/Delete Post   Reply With Quote 
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 ?

[ 02-25-2017, 02:13 PM: Message edited by: Bartenderbonnie ]

Posts: 409 | From Florida | Registered: Nov 2016  |  IP: Logged | Report this post to a Moderator
TF
Frequent Contributor (5K+ posts)
Member # 14183

Icon 1 posted      Profile for TF     Send New Private Message       Edit/Delete Post   Reply With Quote 
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."


http://www.ichelp.org/diagnosis-treatment/treatments/antihistamines/

Posts: 9628 | From Maryland | Registered: Dec 2007  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
OH no .. so sorry to hear. Yes, an anti-histamine can help. What did he give you?

Have you tried Elmiron?

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

Posts: 91012 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
TF
Frequent Contributor (5K+ posts)
Member # 14183

Icon 1 posted      Profile for TF     Send New Private Message       Edit/Delete Post   Reply With Quote 
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."

http://www.advancedpelvic.com/condition-interstitial-cystitis.html

Do a search. You will find many others.

Posts: 9628 | From Maryland | Registered: Dec 2007  |  IP: Logged | Report this post to a Moderator
Bartenderbonnie
LymeNet Contributor
Member # 49177

Icon 1 posted      Profile for Bartenderbonnie     Send New Private Message       Edit/Delete Post   Reply With Quote 
Atarax (hydroxyzine).

Not working.

Pain 10. Vertigo 10. Dizziness 10.

I take Claritin everyday for chronic sinusitis. And I still got IC so clearly an antihistamine is not the solution.

Another weekend of indescribable unrelenting suicidal pain.

ER last resort.

This whole saga is do-it-yourself medicine.

EVERYTHING !

Lyme and company, IC, chronic pain, chronic sinusitis, immune, detox, supplements, herbs, insomnia.

The Wild Wild West of medicine.

Immunologist tried talking me into doing my own infusions. Administer my own shots.

Absolutely not ! I have constant tremors and spasms. Neuro cognitive disabilities.


You become patient AND nurse.

But yet they get so infuriated if you google or ask a question.

Really at a loss as to how to proceed. Nothing's working. . .

Posts: 409 | From Florida | Registered: Nov 2016  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
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?

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

Posts: 91012 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
Bartenderbonnie
LymeNet Contributor
Member # 49177

Icon 1 posted      Profile for Bartenderbonnie     Send New Private Message       Edit/Delete Post   Reply With Quote 
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: 409 | From Florida | Registered: Nov 2016  |  IP: Logged | Report this post to a Moderator
Bartenderbonnie
LymeNet Contributor
Member # 49177

Icon 1 posted      Profile for Bartenderbonnie     Send New Private Message       Edit/Delete Post   Reply With Quote 
Although I am a bartender and have extensive experience in shots ! [Cool]
Posts: 409 | From Florida | Registered: Nov 2016  |  IP: Logged | Report this post to a Moderator
Bartenderbonnie
LymeNet Contributor
Member # 49177

Icon 1 posted      Profile for Bartenderbonnie     Send New Private Message       Edit/Delete Post   Reply With Quote 
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: 409 | From Florida | Registered: Nov 2016  |  IP: Logged | Report this post to a Moderator
unsure445
LymeNet Contributor
Member # 15962

Icon 1 posted      Profile for unsure445     Send New Private Message       Edit/Delete Post   Reply With Quote 
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: 765 | From northeast | Registered: Jun 2008  |  IP: Logged | Report this post to a Moderator
Bartenderbonnie
LymeNet Contributor
Member # 49177

Icon 1 posted      Profile for Bartenderbonnie     Send New Private Message       Edit/Delete Post   Reply With Quote 
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.

Aprilthegiraffe.com. [Smile]

[ 03-03-2017, 11:18 AM: Message edited by: Bartenderbonnie ]

Posts: 409 | From Florida | Registered: Nov 2016  |  IP: Logged | Report this post to a Moderator
   

Quick Reply
Message:

HTML is not enabled.
UBB Code is enabled.

Instant Graemlins
   


Post New Topic  New Poll  Post A Reply Close Topic   Feature Topic   Move Topic   Delete Topic next oldest topic   next newest topic
 - Printer-friendly view of this topic
Hop To:


Contact Us | LymeNet home page | Privacy Statement

© 1993-2017 The Lyme Disease Network of New Jersey, Inc.
All Rights Reserved.
Use of the LymeNet Site is subject to the Terms and Conditions.

Powered by UBB.classic™ 6.7.3


Home | Flash Discussion | Support Groups | On-Line Library
Legal Resources | Medical Abstracts | Newsletter | Books
Pictures | Site Search | Links | Help/Questions
About LymeNet | Webmaster