For those who have interstitial cystitis or refer patients there.... They now do not allow us to discuss bartonella at all and I assume this goes for lyme.
A few members have been banned or harassed. Posts have been infamously closed.
A LL NP is not allowed to be referred to or mentioned.
The leader of this site came onto the healingwell lyme site and posted paragraphs about how IC is not caused by bacteria.
Anyway, just wanted to give everyone a heads up, not sure if she would dare come on here, but just be warned not to post about lyme etc on the ICN.
Posted by bettyg (Member # 6147) on :
up for tutu to read; believe she goes there too!!
thanks for the warning
Posted by Lymetoo (Member # 743) on :
That's a shame. My IC was GREATLY improved with Lyme treatment.
They are deluded if they think IC can't be caused by an infection.
Posted by cantgiveupyet (Member # 8165) on :
yea, lymetoo it is a shame. Some have ended up on heallingwell which is good. the I C N is now monitoring private messages, so we cant really refer others to lyme sites.
I know that I saw improvement taking levaquin for the short time i was on it.
Lymetoo- how are your IC symptoms lately?
I hope one day I can atleast eat more foods.
Posted by Lymetoo (Member # 743) on :
Man, what's WRONG with those people?? IT's so crazy that people "protect" their illness..
I'm doing pretty good. I'm able to eat most things, but acid is still out.
I can do caffeine sometimes, but stay away for the most part, due mainly to my bile duct issues.
I hope you can get to the point where the IC doesn't rule your life! That's where I am and I'm grateful.
Posted by hiker53 (Member # 6046) on :
I just came across a woman whose daughter had IC and had some surgery. Then she developed Bell's palsy. pain in joints, and fatigue and the doctor's didn't know what it was. I suggested lyme and her test was positive. So, I believe the IC and the lyme were connected.
Why can't we all work together and support each other. I don't agree with everyone, but I sure have learned a lot and gained a lot of ideas on this site alone. H53
Posted by hcconn22 (Member # 5263) on :
Censorship in any media is wrong.
It also shows whoever is doing this is in FEAR of something.
I would stay clear of any web site or forum that censors and screens real content.
Posted by Cobweb (Member # 10053) on :
I asked my urogynecologist if my IC could be caused by Lyme Disease-he was non committal-but at least he didn't say NO.
Perhaps they will find IC to be an autoimmune response. My IC has certainly improved with Lyme Treatment. I haven't worn Depends for over a year now!
Although I continue to take my Elmiron faithfully and watch the diet, IC has become such a non issue in my life I just read the newsletter that gets sent periodically.
Posted by bettyg (Member # 6147) on :
hi cant and tutu,
may i suggest another IC site that also has a lyme board??
they now have 300 health issues on their entire, separate boards!! i'm pretty sure IC is there, but it's worth a look.
moderators are members of the board! so you won't be censored there. ROY, is owner; really nice young guy in mid 20s! Posted by cantgiveupyet (Member # 8165) on :
thanks betty,
i will check it out. I have a few sites I go to other then that other one. I learned not to rely to much on one site.
Cobweb- it could be autoimmune, i wish they would figure it out, mine is better since doing the short stint of levaquin and treating the PFD.
but still not to where I would like it. the hormone fluctuations are a major trigger for me.
Posted by Lymetoo (Member # 743) on :
I think the "auto-immune response" is really infection from bacteria. Just my opinion.
Thanks for the link, Betty. I really don't have time to visit other boards, but will keep it for my files for others.
I had to quit teaching after my second bladder distension for IC. It caused the pain to be WORSE [if that was possible] and made my (unknown) Lyme flare to the max.
The rest is history.
Posted by cantgiveupyet (Member # 8165) on :
the distention messed me up too, and if you remember i had to be hospitalized for the bleeding afterwards. The fellow said it was the lyme that caused me to bleed.
Lymetoo- the top IC uro isnt using the hydro for diagnosis or therapy much if not at all. He instills lidocaine and if the patient doesnt feel pain then they have IC.
Posted by Jeni (Member # 16257) on :
I am confused as to why one would question what is causing the "IC" if one is certain they have Lyme. Lyme causes Interstitial Cystitis right?! Of course, Lyme messes up hormones and everything else in the body, so if one is certain they have Lyme, then that's the answer, no? My bladder pain is intense and I wish I could know for certain I have Lyme, as I would be SO relieved to have a REAL diagnosis!
Posted by Lymetoo (Member # 743) on :
Jeni... I'm not questioning what is causing the IC for me.. I'm SURE it's the Lyme.
It's the IC board that for some reason doesn't want to hear that Lyme causes IC. It's pretty stupid if you ask me.
Have you had a test thru Igenex for the Lyme, Jeni?
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