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  1. #1
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    Bladder infections and Lyme Disease

    It has recently been discovered that many who have bladder infections/symptoms also end up being diagnosed with Lyme Disease. THe Lyme bug, Borrelia, can affect any part of the body and only 30% of Lyme patients have had the typical rash associated with a Lyme diagnosis. Diseases such as Fibromyalgia, Chronic Fatigue Syndrome and even Lupus have been found in Lyme patients. Neruological symptoms are also present. Amy Tan, the author, has written about her difficulty in getting a Lyme diagnosis and she ended up with neurological symptoms that were very serious in her case.

    If anyone is suspicious I suggest doing a search on Lyme disease and symptoms. Most doctors would not think to test for this in someone with chronic bladder symptoms but the bladder is a common target for Lyme. Antibiotics can be used to treat Lyme and testing and clinical symptoms are both used to diagnose. One of the best labs for testing is IgeneX in Palo Alto, CA. There is disagreement about diagnosis, just as in IC, but ignoring the possibility of Lyme and not pursuing a definite diagnosis is critical. There is a preliminary immune function test, the CD-57 test offered by LabCorp, and this is a start.

    Polly Murray, who lived in Lyme, CT, was the woman who pushed the doctors at Yale to figure out what was affecting her family and neighbors in the Lyme area. At first she was hospitalized and thought to have psychological problems when they could not figure out the source of her symptoms. (Sound familiar?). They finally found ticks in abundance in the area and from there made the association. She has written a book about her story, "The Widening Circle". This was in 1975, although they knew about a disease caused by tick bites long before this. Lyme can be found all over the world and is becoming one of the fastest-growing infectious diseases in the US.
    And the deer population is increasing all the time.

    It seems appropriate to post this on the Board.

    Martha F
    Last edited by MarthaF; 01-20-2007 at 10:45 AM.

  2. #2
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    Thanks Martha for posting this very important information. For all of you out there who think they may have Lyme disease, Martha is the one who introduced this idea to me and sure enough, I had a diagnosis by three different tests. So she knows what she is talking about!

    I never made the connection myself until it was pointed out to me so I hope this helps people. So many of my symptoms that came along with my IC are also symptoms of Lyme disease. Additionally, chronic Lyme can run down your immune system and allow you to get opportunistic infections in your bladder that are hard to get rid of.

    Please research this topic. And thanks again Martha!

    Meg

  3. #3
    IC Friend glenda's Avatar
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    ditto.... I also have lyme. I think we should have a head count to see how many of us have discovered that we have lyme disease.
    I HAVE LYME TOO

    For info. on lyme disease in PA..
    Visit: http://health.groups.yahoo.com/group/PennsylvaniaLyme

    God Bless You!
    Glenda

  4. #4
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    How many with Lyme?

    Glenda,

    I think your suggestion about asking how many also have Lyme Disease is a very good idea. This kind of association has been done in the case of other problems such as IBS and Vulvodynia. Since Lyme also affects the joints such problems as Fibromyalgia and joint pain could also be linked. It is reported that only 30% of Lyme patients remember a tick bite or rash. The Lyme bug can affect any part of the body and many doctors would not make the association with bladder symptoms.

    I, personally, tested as borderline on the IgeneX test but have a high immune system reading based on the CD 57 test which is an indicator. But I also have taken many antibiotics on my way to healing my bladder completely which may have incidentally treated the Lyme. While ticks are common in certain parts of the US they are found in every state.

    We are dealing with another case of the CDC and others being very slow to realize the extent of Lyme in the population - similar to the situation with IC. Some doctors would look at us and never think we could possibly be infected with Lyme. It is a very insidious disease and often takes patients years to find a correct diagnosis. A combination of testing and clinical symptoms should be used.

    I have heard from many who are finding they probably also have Lyme and perhaps Meg has heard from others, too, after her post saying she was willing to share her story. I will try to find an article by Amy Tan describing her search for answers and post it here.

    Thanks for your suggestion, Glenda.

    Martha

  5. #5
    Forum Manager ICNDonna's Avatar
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    If you're interested in geographical areas where the ticks are found, there is information at http://pediatrics.aappublications.or...full/105/1/142 which includes a map.

    Donna
    Have you checked the ICN Shop?
    http://www.icnsales.com for US & Canada
    http://www.icnshop.com for all others

    Patient Help: http://www.ic-network.com/patientlinks.html

    Diet list: https://www.ic-network.com/patient-r...on/#icfoodlist

    You'll find my story at: http://www.ic-network.com/conditions...tories/page/6/

    I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

    Anyone who says something is foolproof hasn't met a determined fool
    .....My Meggie.....

  6. #6
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    I am another one who didn't get a diagnosis for over a decade. I think I've had Lyme/co-infections for at least 14 years. I was just diagnosed within the past few months.

    ~pj

  7. #7
    IC Friend glenda's Avatar
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    Talking

    Hello Martha..

    NO PROBLEM..:woohoo:

    How are you doing? Have you begun treatment for lyme? If so, what rout have you taken (if you don't mind my askin)... traditional or alternative?

    I still don't have a lyme doc, so I'm sorta sliding back to square one with my bladder. I took the abx prescribed to me for the strep and ecoli, for three months, and I was feeling GREAT about six weeks into the tx.. continued taking the abx until it was gone. My IC symptoms improved almost 100%. When I retested through UML, my urine came back clean, or negative for infections. Now though, I've been off the abx for about two months and my symptoms have returned. I know I have another infection, but can't afford to retest at this time... I'd like to point out that the relief I got from the abx was NOT JUST ANTI-INFLAMMATORY AFFECTS of the abx. It was obvious to me that the infections which were cleared up by the abx were what was causing my IC symptoms... Besides, I felt the great relief of my symptoms for over a month AFTER haveing stoped the abx treatment. I don't believe that the anti-inflammatory properties of those abx would last that long in my system to give me the amount of relief I felt. I'd just like everyone to know that.

    Ok then.. God bless, and take care!
    I HAVE LYME TOO

    For info. on lyme disease in PA..
    Visit: http://health.groups.yahoo.com/group/PennsylvaniaLyme

    God Bless You!
    Glenda

  8. #8
    ICN Member mich2604's Avatar
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    I have lyme

    I have lyme too

    I was actually diagnosed in Nov 05 before my bladder problems took off. My first lyme dr believes Ive had lyme since my tick bite in 2000. I was sick with different aliments since that bite, including a wierd bladder type of thing that presented with lower left back pain.

    I was knocked on my butt quicker then my body could register and deal with it in August 2005. It was Dec 2005/jan 2006 when the bladder symptoms really took off and the IC began. My bladder symptom was one of the last ones I was to get :-( Ive heard that about 30% of lyme patients have bladder involvement.

    Because my immune system is so messed up antibiotics cause me horrible yeast infections, so I cannot take those at all right now, so it is a struggle. As a result i started taking neurontin and zanaflex to help my body deal with the pain.

    I have extremly high cortisol levels, probably because my body is fighting or trying to fight all the invaders, its very overwhelming and taxing on my body.

    Along with IC , i have PFD and VV.......all hit me at the sametime. Ive been reading PFD can be caused by infection, so my feeling is it is either lyme or an oportunistic yeast infection that caused it. And since the vulva and bladder are the only organs in our bodies made of the same tissue, i am certain whatever infection is causing the IC is causing the VV too.

    Maybe one day I will be able to take the antibiotics and clear this infection for good.

    thanks for posting.


    Lyme disease diagnosed 11/05
    vulvar vestibulitis diagnosed 2/06 -worst case she has ever seen..very bad.
    IC diagnosed with hydro/cysto- may 17, 2006

    Over growth of lactobicilli found 8/07 treating with doxy.

    Was able to get my first internal exam evaluation for PFD....wohoo 1/18/07:woohoo:

    8/22/07- was able to get my first speculum exam, with pap

    Strep D found in bladder with United medical labs May 2006
    2 strains of strep in stool culture 9/06
    high Strep ASO titre found 10/06

    NEW MED

    Capsasin cream-once a day for 20min,
    BUt wont lie it does burn

    About to start valium supositories for PFD

    Trigger point injections- oct 07

    Current meds:
    Neurontin- 100mg at night supposed to work up to 300mg if i can tolerate it
    Zanaflex 2mg
    IC and low oxalate diet, no sugar diet
    Xanax for appointments to help relax me since they cause so much pain

    Started PT 3/07, PT has really helped me in ways I never knew that it would

    Meds ive tried
    Lyrica
    Klonopin
    Singulair
    Claritin
    Pyridium
    Soma- can barely tolerate half a pill
    Atropine cream- didnt seem to work, although i found out I was applying the creams wrong
    Estradiol cream
    Urelle- caused worse bladder spasm and retention

    Various antibiotics for lyme which caused yeast and made the IC and VV worse

    waiting for the next chronic illness to pop up


    "Did you know?
    Every 15 seconds,
    a person is
    diagnosed with
    interstitial cystitis."
    Source: J. Dimitrakov, MD

  9. #9
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    Glenda,

    Sorry to hear you haven't found a Lyme doc and can't afford to re-test at United Medical.

    I am glad to hear though that you got relief of your IC symptoms for a while though. That is definitely a positive sign! I really wish you could get back on treatment.

    ~plainjane

  10. #10
    IC Friend glenda's Avatar
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    Plainjane,

    Thank you. I have been reading a bit about Dr. Buhner's natural protocol for healing lyme and am considering that rout. There seems to be many successful testimonies from those whom have followed it. It sounds impressive to me.

    I hope all is well with you. Take care.
    I HAVE LYME TOO

    For info. on lyme disease in PA..
    Visit: http://health.groups.yahoo.com/group/PennsylvaniaLyme

    God Bless You!
    Glenda

  11. #11
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    Yeah Buhner's book is good. I haven't tried his protocol but I have the book and it's really good.

    Things with me are okay. I'm not getting better and I'm not getting worse.

    ~plainjane

  12. #12
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    Has anyone read that bladder symptoms are a part of late stage or chronic Lyme? I was just wondering.

    ~pj

  13. #13
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    Daylelynn,

    So sorry to hear about your friend. Being sick is bad enough without adding debt and frustration on top of it. I have heard Dr.Ryser is really good. You're right that Lyme disease is very difficult to diagnose and it's very hard to treat. Between the co-infections that are hard to treat and the fact that the symptoms of Lyme overlap with so many other diseaes well it's a really difficult road.

    I just turned 27 last month. I have been totally debilitated from this disease since I was 24. I personally feel very confident that the diagnosis is correct in my case. Unfortunately if it is incorrect though I have absolutely no other ideas what it could be.

    What is your friend's treatment plan now? How is she doing emotionally? She must be pretty upset.

    ~plain jane

  14. #14
    ICN Member mich2604's Avatar
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    Sorry to hear about your friends experience. That sounds terrible.

    Did she have any other lyme symptoms besides her bladder problem? There are many many causes to IC.....and there isnt an accurate test for lyme.


    For me I know for sure my immune system is suppressed, bases on testing...i also have the gene that doesnt allow me to get rid of lyme bacterial toxins....so when i kill the bacteria.....Im actually making my body even more toxic.

    i was told by my gyno he believes I may have gotten a virus from a mosquito and that could be the cause of my nerve disruption in my bladder and Vulva....who knows.

    Ive lost everything to my illness, my job, friends, my life. So, i can only imagine how your friend must feel after spending all that money.

    thanks for sharing.


    Lyme disease diagnosed 11/05
    vulvar vestibulitis diagnosed 2/06 -worst case she has ever seen..very bad.
    IC diagnosed with hydro/cysto- may 17, 2006

    Over growth of lactobicilli found 8/07 treating with doxy.

    Was able to get my first internal exam evaluation for PFD....wohoo 1/18/07:woohoo:

    8/22/07- was able to get my first speculum exam, with pap

    Strep D found in bladder with United medical labs May 2006
    2 strains of strep in stool culture 9/06
    high Strep ASO titre found 10/06

    NEW MED

    Capsasin cream-once a day for 20min,
    BUt wont lie it does burn

    About to start valium supositories for PFD

    Trigger point injections- oct 07

    Current meds:
    Neurontin- 100mg at night supposed to work up to 300mg if i can tolerate it
    Zanaflex 2mg
    IC and low oxalate diet, no sugar diet
    Xanax for appointments to help relax me since they cause so much pain

    Started PT 3/07, PT has really helped me in ways I never knew that it would

    Meds ive tried
    Lyrica
    Klonopin
    Singulair
    Claritin
    Pyridium
    Soma- can barely tolerate half a pill
    Atropine cream- didnt seem to work, although i found out I was applying the creams wrong
    Estradiol cream
    Urelle- caused worse bladder spasm and retention

    Various antibiotics for lyme which caused yeast and made the IC and VV worse

    waiting for the next chronic illness to pop up


    "Did you know?
    Every 15 seconds,
    a person is
    diagnosed with
    interstitial cystitis."
    Source: J. Dimitrakov, MD

  15. #15
    ICN Member
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    672
    How is everyone's treatment going? Anyone making any improvements?

    I think I've made some improvements with my energy but not any with my bladder yet. Right now I'm only on Bicillin injections for the time being.

    ~jane

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