I have been diagnosed with Lyme since last October. When I was diagnosed I had psychiatric issues, joint, muscle, night sweats, tingling.
So far I can't complain all those symptoms are much better with lots of different antibiotics and meds.
About six weeks ago I started getting pain near my bladder. I has urgency to go a lot. The pain now is so bad it keeps me up sometimes at night.
I now see a urologist. He said right now it looks like its interstitial cystitis. Did anyone have that? What did you do to help it? Did your doctor say its caused from Lyme? Why would it start now after I'm doing so well with treatments.
Any thoughts, ideas , comments would be appreciated.
Posted by Lymetoo (Member # 743) on :
Yes, I was diagnosed with it about 25 yrs ago. It ended my teaching career. After I found out about Lyme disease and was treated, I got much much better.
I still don't know exactly WHAT helped.
I have found out in recent years that foods high in histamine make it worse, as do foods high in oxalates. You need to look up lists for those.
Doshey, although we've sent PMs about how my IC got better, I'm going to post it anyway for others who are going through this. However, some of the progress regarding the IC may have been because Lyme and coinfections decided to migrate to a different part of my body. Who knows.
* Everyone responds to treatment differently, so I'm not recommending anything. Just sharing my experience-
Okay, first and foremost, there is hope. I was told I was one of the worst cases they had ever seen re: IC, and I rarely have problems now. The pelvic therapist I saw told me only AFTER I got better that she didn't think I was going to get better even though the whole time I saw her she would tell me I would get better. So YOU CAN GET BETTER FROM IC.
A nutritionist and gynouroocologist actually did a study on me and presented it at a P.U.R.E. Hope (IC and pelvic group) conference (with my anonymity in check) bc I was such a tough case.
I had all sorts of stuff done, including Botox in the bladder, a pain block, and then finally an interstim implant (like a pacemaker, but it goes to the sacral nerve and shocks the sacral nerve).
If you smoke, quit. It irritates the bladder. Avoid potassium chloride. It is in Dasani water, btw.
I think a combo of things helped me: cutting out gluten and casein. I hated/hate it, but if I have them, it effects me. Drinking ONLY water. No caffiene. And I was a caffiene addict. I went for two or three years without it when IC was super bad. Increase water intake. It's counterintuitive, but you will eventually notice a difference.
This is a biggie: pelvic floor exercises. 30 minutes a day no joke. It took about 6 months for me to notice a difference w pelvic floor exercises bc initially my pelvic floor muscles wouldnt even register on the pelvic therapist's machine.
I went to a pelvic therapist. Then I got a home kit that did the same thing I did with the pelvic therapist.
The book, "Beyond Kegals," explains how to do pelvic floor exercises *correctly.*
Main recommendations: water only, no gluten or caseine, nothing acidic, pelvic floor exercises 30 minutes a day. If I have surgery, I tell them NO catheter. I'm adamant about that bc I don't want to go through it again.
Also, interstitial cystitis association has a card (looks like a credit card) that you can show to someone if you are in a public place and have to use the restroom but you're not a customer. So, if I felt like I had to go, I would pull the card outta my wallet and show it to whomever and they would let me have access to the bathroom.
Posted by dogmom2 (Member # 23822) on :
I got IC years ago while taking some herbs for parasites. my md and gyno had no idea what to do. My lyme doc suggested dgl powder and it calmed it down.
I don't take any meds/herbs anymore(too reactive) so it hasn't come back.
Posted by bluelyme (Member # 47170) on :
My nurse was given this dx and she said it cleared with ozone insufflations in her catheder.!...this was before lyme dx...then a yr abx ,2 h202,and 5 yrs bvt. She works 2 part time gigs now
Posted by Keebler (Member # 12673) on :
- D-Mannose -
Posted by bcb1200 (Member # 25745) on :
Not sure if you are a man or woman. I'm a man and had this about a year ago. Started off as bladder pressure with mild IC like symptoms that would wax/wane.
Then it became more prostatitis-like.
In the end, it appeared my pelvic floor muscles were the cause...likely due to lyme and co. All is now better after treating with abx and then about a year of pelvic floor therapy with a classic osteopath.
Posted by tulips (Member # 44773) on :
Doshey, I was incontinent for a while but having a cup of corn silk tea every morning made it so that each day, I was not incontinent; however, I couldn't let a day go by without having my cup of tea.
Cornsilk can be taken in two ways: by capsule, or by taking the loose herb (if you feel ambitious, you can make your own - Cornsilk is the brown "silk" at the top of the corn.) I used a lot of Cornsilk to make my tea
because it is a mild taste and I like strong tea. It makes a pleasant breakfast tea that goes well with eggs, etc.
Posted by doshey (Member # 46853) on :
Thank you everyone. I also wanted to ask if you ever heard this and its true.
Someone told me a lot of people get this interstitial cystitis diagnose as they get better from the Lyme. She said Lyme comes out of your bladder through urine and it starts causing the bladder to herx
Any one hear anything like that?
Posted by tulips (Member # 44773) on :
There is an IC network which might be of interest to you. http://www.ic-network.com/ Posted by me (Member # 45475) on :
Doshey, I've never heard anything like that. My IC started about ten years ago before I was even treated for Lyme and the IC was better after three years of the doing methods I posted.
However, not a whole lot is known about IC, so what you posted could possibly have some validity to it. Who knows? Wish I was more help.
Posted by Lymetoo (Member # 743) on :
My LLMD said that lyme LOVES the bladder. It's a nice safe place to camp out.
Posted by doshey (Member # 46853) on :
Me, thank you. Don't worry you are always helpful.
Posted by me (Member # 45475) on :
Thanks, Doshey. Btw, another member who has IC got the book I recommended, "Beyond Kegels," yesterday. She said that she flipped through it and thinks it's going to be very helpful.
Remember to drink plenty of water and avoid irritants (caffiene, smoke, acidic products). It's crazy how the irritants have such a huge effect, but coming them out was essential to reduce my symptoms.
Also, be aware that IC symptoms generally get worse during your menstrual cycle.
Urelle is a prescription med that helps with the burning and frequency. It turns your pee a really interesting purple-ish color. You might ask your LLMD about it bc I think it also has antibiotic properties to it:
![[kiss]](graemlins/kissing.gif)
Thanks, Doshey. Btw, another member who has IC got the book I recommended, "Beyond Kegels," yesterday. She said that she flipped through it and thinks it's going to be very helpful. ![[group hug]](graemlins/grouphug.gif)