Bladder infections and Lyme Disease

[MarthaF]

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

[meg31]

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

[glenda]

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.

[MarthaF]

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

[ICNDonna]

If you're interested in geographical areas where the ticks are found, there is information at http://pediatrics.aappublications.org/cgi/content/full/105/1/142 which includes a map.

Donna

[PlainJane]

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

[glenda]

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!

[mich2604]

I have lyme too:hi:

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.:cat:

[PlainJane]

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

[glenda]

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.

[PlainJane]

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

[PlainJane]

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

~pj

[PlainJane]

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

[mich2604]

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.

[PlainJane]

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

[meg31]

Hi everyone.

Hope you are all doing well. I haven't posted in a while so I thought I would update you all on my progress. I've been treating my Lyme disease with Minocycline for about 4 months now and so far I haven't noticed any differences in my Lyme symptoms except that it makes me completely exhausted. However, I have noticed some improvement in my bladder. I recently finished Rocephin injections (not fun!) for 15 days to treat a persistant drug-resistant Klebsiella infection and now I'm on amoxicillin/augmentin for Strep D. I am dealing with yeast issues too so it's hard to tell what symptoms are what (I'm sure you all know!). I've been on the augmentin for about 2 weeks now. I'm told I may need to take it for months though. I felt instantly better after about 3 days of it but recently I am experiencing shooting/stabbing pains in my pelvic and bladder area. Has this happened to anyone on amoxicillin? Could this be die-off? Or possibly yeast problems from all the antibiotics? I'm taking Nystatin with each dose and probiotics throughout the day but maybe that's not enough. How can I tell if my bladder pain is caused by recurring infection or just a side effect of the treatment??

PlainJane- how are the Bicillin injections working out? When I was on Rocephin injections, I noticed that I felt relief much faster than with oral drugs. And it cleared up my infection after months of trying to kick it with the oral antibiotics. I hope you have similar success!

Has anyone else taken minocycline for Lyme? I wondering if I should inquire about taking something else. However, I trust my Lyme doctor fully, as he seems to know his stuff. He whole-heartedly believes that infection and immune system problems due to Lyme are causing my bladder issues and he is trying to give me an "all body" approach to healing. I don't know what I'd do without his support!

Well, I hope you are all experiencing success. Keep us posted! It's so nice to hear when people are doing better!

Meg

[Katrina]

My guess was yeast when I read it I can't say about
I do yeast can cause spasms in some people.
http://www.ic-network.com/forum/showthread.php?t=24978&goto=newpost.yeast

http://ic-network.com/forum/showthread.php?t=21385 antibiotics poll that thread brings you to a poll on antibiotics that IC patients haven't had fun with...maybe it can help.

[PlainJane]

Meg,

You and I have had some similar problems by the sounds of it (Klebsiella and group d strep).

Those infections are gone now for me. I haven't had any symptom relief whatsoever with the Bicillin injections. My bladder's not any better at all and I'm struggling a lot with all the same Lyme symptoms as I've always had. In particular my chronic insomnia is horrendous at the moment. I've been on Bicillin since September.

~plainjane (aka Erica)

[meg31]

Erica-
We do have a lot of symptoms in common. I also suffer from terrible insomnia. And when I'm not having trouble sleeping, I'm horribly sluggish. You said you got rid of your klebsiella and strep...what are the Bicillin injections for? I'm sorry that you're not getting any relief. That is so frustrating. My relief comes and goes so when I feel better I am not too hopeful that it will last. Are you seeing someone good for your lyme? I hope so. Good luck and keep me posted.

Meg

[glenda]

I'd like to throw a kicker in here in regard to my own experience. First, I'd like to say to Erica, I'm so sorry to hear that you are still haveing so much difficulty. I know you have been struggeling a long time with this. I wish I knew why some people have such great success with antibiotic treatment for their bladder infect., such as Klebseila and strep, and others go on suffering.

For me, the right antibiotics for these same infections have been a real blessing. Clindamycin has thrown me into complete remission, bladder wise. But, since I have not been able to continue the treatment, and I have not yet begun treatment for my lyme, I again have minor bladder irritation. When I say "minor", I really mean MINOR. My bladder is so much better than before. I recently ordered some more of the clindamycin, but have not begun retaking it yet. But I know that once I am able to continue the treatment, I will be in remission once again.

I just wanted to add this, because I'd hate for people to be discouraged from trying this type of treatment due to some seemingly failed successes. My heart goes out to Erica and others who have not gotten the relief they so deserve from trying the antibiotic approach, but I believe there have been many of us who have had tremendous success with this type of treatment, and our success should give merit to the possibility that many others could also be greatly helped by the right antibiotic treatment.

I also believe that lyme disease, and possibly other hidden systemic diseases, can play a role in our successes and failures of treatment regimens. So, just because antibiotics seem to fail your expectations, doesn't nessasarily mean you don't have a serious infection going on.

That said, I don't know, as no one knows, if ALL IC is caused by an infection of different sorts, but I believe, as my experience has proven to me, that mine is caused by an infection. Which leads me to believe that there are probably many other patients who's IC is caused by infection, and everyone should consider it as a possibility for themself, even when their traditional physician tells them it's not an infection. I saw doctor after doctor and got nowhere. I had to do the work myself in figuring out the cause of my symptoms and what treatment worked. I have much less faith in our medical society these days. Good doctors are few and very hard to come by.

That's my 2 cents. I hope everyone will consider the successes acheived by many patients treating their IC with THE RIGHT antibiotic approach, and not rule out this possibility. You may be able to get your life back, and it would be a shame if you didn't follow up on this theory because of some seemingly failed outcomes if YOU actually can be helped with this treatment approach.

Erica and others who are still haveing a tough time could be experienceing a more complex infection than what you or someone you know has to deal with. Lyme disease, alone, can be very complicated to treat, not to mention the co-infections that are usually also involved. Don't dismiss the possibility of an infection connection to your IC just b/c the results of other patients treatment regimens don't look clear cut, or simple enough. What, in this world, is simple, anyway?

Good luck to all!

[mich2604]

glenda , great post!

that is wonderful news that your bladder is much better.

I forget did you have food sensitivities- I always wonder if those that bacteria is the cause have the food sensitivities.


Erica- sorry that you arent doing any better, hang in there.

Lyme is so tough to live with it just affects your whole system.

Im battling the yeast again now after being yeast free for months. Im pretty sure it is because of the lyme.

[glenda]

mich,

thanks. and, to answer your question.. the only food sensitivity, or allergy, that my allergist was able to identify was to coconut fatty acids. I had to change my shampoo, conditioner, soap and lotions due to the coconut addititves they posessed. However, I really didn't ingest much coconut, so that wasn't much of a problem as far as changing my diet.

Do you have food sensitivities?

BTW, I follow the "Eat Right 4 Your Type" diet as much as I can, and I find it to be very beneficial as far as digestion concerns. This is a book that I purchased which explains why and how a person should eat and/or avoid certain foods with regard to their blood type. I highly recommend this book and this type of diet to anyone interested.

[mich2604]

I have that book and find it helpful too. Many of the foods on my non beneficial list are foods i have trouble with since getting sick.


Did you follow the iC diet at all, sorry for the confusion that is what i meant by the food bothering your bladder.


Oh and did you ever get worse during your period.


thanks

[glenda]

Oh, ok. Umm.. I seem to do well with the foods that are on my beneficial list too. The foods on my avoid list give me some minor digestion trouble.. not necessarily affecting my bladder though. But I find it interesting that in my avoid list is "coconut", which I became allergic to following my coming down with IC. I never did the "IC diet", but I just avoided whatever would bother my bladder.. to some degree, anyway. Coffee would bother my bladder, but I would drink it anyway, on occasion.

Yes, I was terrified of getting my monthly "friend" each and every month. It was a horrifying nightmare! I had to have a complete hysterectomy at age
30. I litterally thought I was dieing the first few days of my period. It hurt to move.. it hurt to breath! The pain was beyond describable.

[PlainJane]

Meg-The Bicillin shots are for Lyme disease

Glenda Very well said! I don't want my experience to discourage anyone. Lots of people get better with antibiotic therapy I just haven't yet. I am dealing with Lyme disease, babesia, bartonella, adrenal insufficiency and hypothyroidism. It's a mess! I'm 27 years old and I feel like my life is over. I was much more positive for some reason up until recently. I feel like I have been backsliding emotionally. I haven't felt this discouraged in ... well I can't remember the last time I felt this discouraged. I had recently tried a sleep medication that I was VERY hopeful about because it has helped so many other people but it didn't work for me at all. So needless to say that was extremely upsetting.

Mich I know what you mean about the yeast. I really need to be better about the candida diet but the thing is I'm always so tired that I could care less. And I don't have the energy to learn how to cook. I don't know what to do.

I'm so burned out!

Erica

[glenda]

Erica, I'm really sorry to hear you are haveing such a hard time. It sounds like you could have some depression going on too. I'd mention it to your doctor. Maybe he/she can give you something to help you deal with your stress. I can relate to how you feel, as I'm sure many of us can. I wish there were something more I could do, other than just lending some supportive words.

If you have babs and bart co-infections, why are you on treatment for lyme, as you said the bisillin shots are for lyme? I'm wondering, b/c everything I've read so far says that a person whith lyme + co-infections should treat the co-infections first, otherwise the lyme tx could be ineffective.

hope you start to feel better very soon!

[PlainJane]

Hi Glenda. I don't think I'm depressed. Discouraged and frustrated yep but not depressed. Besides I can't take meds for depression 'cause they make me manic.

I am on the Bicillin because it is supposed to keep the Lyme "in check" while we treat the co-infections. The Bicillin is to make sure the Lyme doesn't do any more damage while I treat babesia & bartonella. You're right you have to treat co-infections first.

Erica

[PlainJane]

What happened to Daylelynn's post in this thread? It seems to have just disappeared!

Erica

[vm]

Looks like she deleted it.

[meg31]

I also follow the Eat Right For Your Type diet and have found it very helpful and interesting. I also have the Blood Type Encyclopedia which makes recommendations for specific problems. There's a whole section on cystitis and they recommend antibacterial protocols based on blood type that I have been trying. I really like these books and find it interesting that I tend to crave the foods on my "highly beneficial" list and have problems with the ones on my "avoid" list.

For those of you with Lyme, I'm currently reading a book called "Healing Lyme" by Stephen Harrod Buhner that is really great. It offers some alternative remedies that can replace or supplement traditional antibiotics and also ways to deal with die-off and yeast problems. I highly recommend it!

[krs72]

I know this is an older thread but after being diagnosed in May of 2009 with IC and reading everything I could get my hands on about IC, I found this thread and other material about a possible Lyme/IC connection. So, having no symptoms other than feeling unusually tired, I asked my family physician to run the Western Blot test. I also live in NJ. I was shocked when it came back positive. She put me on Doxycycline oral for 3 weeks.

I have been off the doxy now for almost 3 weeks, but saw a doctor yesterday who specialized in Lyme. She is testing me again with more sophisticated testing methods for borrelia along with the various coinfections. I will know in about 7 days if I still have active Lyme or not - meaning whether or not I will need to take more antibiotics. She said that Lyme can affect the bladder and pelvic region. She also said that 3 weeks of antibiotics is how someone who is just bitten is treated. For someone like myself with positive lab tests, I should have been given 6 weeks. My questioned the urologist I was seeing at the time and he does not think that Lyme caused the IC, but unfortunately I was not tested for Lyme prior to being diagnosed with IC. There is still a lot to be learned about Lyme, which is often referred to as a "great imitator" .