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Lyme Disease ForumsGeneral & SupportLyme Disease and Interstitial Cystitis
02/21/2010 08:40 PM
jeffrey89
jeffrey89Posts: 3
New Member

Does anyone else besides myself have a bad case of Interstitial Cystitis as part of Lyme disease and co-infections? If so, what treatments seemed to work to decrease the bladder pain? Thanks.
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02/21/2010 09:01 PM  Top
kristielyme25
kristielyme25
 
Posts: 473
Member

Firstly, welcome to the site! I was diagnosed with IC in early 2005, and was just diagnosed with lyme this past october. Turns out I contracted lyme in utero...so I have had it for a long time (25 years...).

I have a pretty bad case, and it seems that my herxing is centered in my bladder, although my herxing is completely disabling...

I have only been on treatment for lyme, babesia, and bartonella for 7 weeks now, so I haven't been able to find any relief as of yet. It seems to be an uphill struggle for me at this point.

I wish I could help you out more...at least you know I understand what you are going through...Good luck and stay strong!

I am not a medical doctor YET...my opinions are not approved by the FDA! ;)

“If you will call your troubles experiences, and remember that every experience develops some latent force within you, you will grow vigorous and happy, however adverse your circumstances may seem to be.”
-John Heywood

"Between you and every goal that you wish to achieve, there is a series of obstacles, and the bigger the goal, the bigger the obstacles. Your decision to be, have and do something out of the ordinary entails facing difficulties and challenges that are out of the ordinary as well. Sometimes your greatest asset is simply your ability to stay with it longer than anyone else."
~ Brian Tracy

~k~

02/22/2010 01:42 AM  Top
Bettyg
 
Posts: 26472
VIP Member
I'm an Advocate

hi jeff Smile

i do know of men with IC also. they are still having problems with this. check this site ok Smile

Interstitial Cystitis and Lyme from Jill

A good site for IC...is www.ic-network.com

A yahoo group called LymeTreatments is a small group of IC patients who all turned out to have Lyme.

Bladder pain is a major issue for them so the discussion often is of which antibiotics make bladder flares worse or better. Very nice group of people.

Many of them work with particular practitioners who are specialists in IC, then began to realize a sub-group of patients were Lyme, too. They know IC specialists that I was not familiar with - you'll get some names that you don't normally hear within Lyme circles.

My IC-like symptoms pretty much resolved shortly after I started antibiotics for Lyme but I do get flares every now and then.

edited link below

http://health.groups.yahoo.com/group/LymeTreatments

Post edited by: Bettyg, at: 02/22/2010 02:07 PM

BettyG, IOWA ACTIVIST
RETIRED llmd coordinator of 6 yrs; group leader

NOTE: I DO "NOT" USE CHAT thanks!
**************************************

NO INFORMATION SHOULD BE CONSIDERED MEDICAL ADVICE.
please see my WELCOME LETTER/BEGINNER'S LINKS with important links/info galore :)

http://www.mdjunction.com/forums/lyme-disease-support-forums/general-support/2356916-bettygs-welcome-letter-wgood-beginner-links-

Any information provided should not be used to take the place of advice from your personal physician or other professional.

Information on those sites is the opinion of those who publish the sites and is NOT necessarily that of BettyG.

43 yrs. chronic lyme; 35 yrs. misdiagnosed by 40-50 drs. unacceptable; see my profile for more.

02/22/2010 07:32 AM  Top
kristielyme25
kristielyme25
 
Posts: 473
Member

Thanks for that, Betty! I will be looking into that site...in fact, my IC specialist is the doc I chose to be my corresponding doc if/when I start IV antibiotics since my LLMD is 7 hours away..

thanks again!

Betty, for some reason, that link didn't work for me, so I found it on a yahoo search...here is my link...maybe it will work?!?

http://health.groups.yahoo.com/group/LymeTreatments

Post edited by: kristielyme25, at: 02/22/2010 07:38 AM

I am not a medical doctor YET...my opinions are not approved by the FDA! ;)

“If you will call your troubles experiences, and remember that every experience develops some latent force within you, you will grow vigorous and happy, however adverse your circumstances may seem to be.”
-John Heywood

"Between you and every goal that you wish to achieve, there is a series of obstacles, and the bigger the goal, the bigger the obstacles. Your decision to be, have and do something out of the ordinary entails facing difficulties and challenges that are out of the ordinary as well. Sometimes your greatest asset is simply your ability to stay with it longer than anyone else."
~ Brian Tracy

~k~

02/22/2010 02:08 PM  Top
Bettyg
 
Posts: 26472
VIP Member
I'm an Advocate

kristy, thanks for telling me; i edited; i see the only difference was mine had / on the end; go figure.
BettyG, IOWA ACTIVIST
RETIRED llmd coordinator of 6 yrs; group leader

NOTE: I DO "NOT" USE CHAT thanks!
**************************************

NO INFORMATION SHOULD BE CONSIDERED MEDICAL ADVICE.
please see my WELCOME LETTER/BEGINNER'S LINKS with important links/info galore :)

http://www.mdjunction.com/forums/lyme-disease-support-forums/general-support/2356916-bettygs-welcome-letter-wgood-beginner-links-

Any information provided should not be used to take the place of advice from your personal physician or other professional.

Information on those sites is the opinion of those who publish the sites and is NOT necessarily that of BettyG.

43 yrs. chronic lyme; 35 yrs. misdiagnosed by 40-50 drs. unacceptable; see my profile for more.

02/22/2010 07:22 PM  Top
tjttsmith
Posts: 21
New Member

I do, I do! I don't know which came first, probably the Lyme, but my IC is pretty extreme. I just started treatment and it is definitely better, but flares with a herx. I'd be interested in checking out the other board, too. Thanks for sharing!

05/18/2010 04:43 AM  Top
Paschalltwin
Paschalltwin
 
Posts: 199
Member

I have interstial cystits as well as Lyme, however, I haven't found treatment yet.

05/21/2010 09:42 AM  Top
Cinderskenney
Cinderskenney
 
Posts: 20
Member

I've been reading about D-Mannose, has anyone successfully tried this to treat lyme induced UTI/ IC?

07/02/2010 07:28 AM  Top
Cinderskenney
Cinderskenney
 
Posts: 20
Member

update: I have been using D-Mannose and it has helped so much. After stopping Bactrim the pain came right back but D-Mannose is keeping it in check. Not a cure but helps with the pain.

07/02/2010 10:44 AM  Top
diaba
Posts: 71
Member

I use DGL Plus from pure encapsulations and it helps, it has deglycyrrhizinated licorice, aloe vera, slippery elm,marshmallow root and vit c.

diana

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