A long road to recovery.

[Lee Read]

Hi,
After 7 yrs, many Drs, endless treatments, 3 interstims,pain, lack of sleep to limit of my endurance I am 90% to 100% of what I was like before IC. What helped.
100mg of Elmiron, 8ml lidocaine, 4ml sterile water, 3ml sodium bicarb, instilled into my bladder by me(started with 3 times a day/now 1 time a day).
Dr. Parsons at UCSD had me try this. All the health food, herbs, teas, etc, only gave me a falce sense of hope.
I sleep all night long and urinate no more than 5 or 6 times a day.
I have waited 5 months to post this to make sure it really worked.
Thanks--Lee

[kelly McC]

Lee,
So glad your treatment is working for you.:thumbsup: I pray you will continue to have success. Best wishes:grouphug: :angel:
Kelly

[Ginny]

I'm so happy you found something to work for you. It does not sound like it was easy so all your hard work paid off. Hope it continues to be the answer.

Ginny

[vm]

Thank you SO much for sharing your recovery story!!! We need more people to do that and then to stick around!!!! I hope to keep seeing you here! :)

[Iris]

Hey what a wonderful post, so happy to read that you are doing great. Your hard work certainly did paid off for you. I imagine how wonderful a feeling it must be for you, congrats and hugs. Keep us posted as to how things are going for you, hugs Iris.:thumbsup: :hi: :dance: :woohoo: :flower:

[blue]

Absolutely Wonderful!

[mayray518]

always glad when someone finds relief. I know how much we all long for it.

[dyno]

That is wonderful news. I had to stop Elmiron after a year due to side effects. It is nice to know that if I need to try something different in the future this might be an option. Possibly instilled Elmiron would not bother me. Yes, please stick around.:)

[grace 2]

Lee, Thanks so much for posting about your success. Very encouraging! :) Grace

[Sarojini]

Thanks for posting about your success! It is really helpful to those of us who are still struggling to find consistent relief :)

[KathleenS]

Lee,

Congratulations on your success! It must be so wonderful! I have tried everything, including oral Elmiron (6 mos), 2 InterStims and Cystistat, so I'm probably in about the same shape that you were in before. I take it you went to see Dr Parsons in person. Did you just have to see him once? Could you give me some more info. on this treatment? I am wondering if there is anything written about it anywhere that I could show my uro to coax him to try this with me. Any info would really be helpful.

Thanks, so much,
Kathleen

[blue]

Your story is a dream come true!

[Lee Read]

Hi Kathleen,
I can fax you the instructions Dr. Parsonms faxed me on the Elimiron instillations. Your Dr. should be able to prescribe the Elmiron(100mg.), lidocaine(2%), sterile water, sodium bicarb and Astra Lofric catheters. It's really pretty simple to do(self cath).
I am only doing it once every 2 days now and feel great(no flares, no pain, sleep all night long). They said the reason this works is that you get 100mg. of elmiron directly in you bladder instead of the small amount you get after it's been through you stomach and kidneys.
Let me know if you want me to fax the instructions from Dr. Parsons.
Thank you,
Lee

[Lyn40]

Lee,
Thank you for posting this. Five months is a long time to see improvement. I am so happy for you.

Lyn
:grouphug:

[Rita_Lorraine]

Thank you so much Lee for posting. It gives all of us IC patients hope. I wrote down everything you said and am going to give the info to my Uro. I would love to see if it would work for me. I'm so happy for you too! I hope your sucess continues for you. Thanks again!:thumbsup: :party:

[Julie Smith]

Lee,

So happy you're pain free and back to normal. There's hope for the rest of us. Continued good health.

:kiss:

[Donna L]

So glad to hear a sucess story. Thank you for posting. It gives hope that there really are brighter days ahead. I'll bet that "magic" formula finds it's way into many uro's offices. May your success continue:dance: :dance: ....Donna L