Beginnings of Success!

[meg31]

Hi Everyone,

I am calling this “beginnings of success” because I don’t feel as though I am completely better but am on my way there and know what I need to do to get there (and that is a great feeling!). I was going to wait to share my story until I felt 100% but thought you all could benefit from my information. My bladder problems reached an unbearable point last spring and I thought I wanted to die. I was diagnosed with IC in October of last year and since then have refused to believe that my bladder was just all of a sudden destroying itself (after a lifetime of being healthy). I went on a quest to find out possible infectious causes of this disorder and this is where I found relief.

A friend on the ICN referred me to someone who believes that there is an infectious element to IC. I began seeing her and have felt better progressively ever since. I have been bringing my urine routinely to United Medical for broth cultures to monitor bacteria in my bladder. So far I have found enterococcus, klebsiella, and staph in layers in my bladder. Each organism has had different sensitivities to different drugs and each time I have been treated appropriately with different antibiotics. I think this is why some people don’t have success with antibiotics- because there may be layers of different bacteria that need individualized attention. One drug may not fix everything. Trust me, this is a long and expensive process but I believe that it is worth it! My bladder feels so much better as I treat each infection. I am taking supplements to boost my immune system and to help my bladder wall heal at the same time. I am not taking any other drugs. Just the antibiotics and supplements.

PlainJane has mentioned a connection with Lyme disease in some of her posts. I have also been diagnosed with Lyme disease recently and I may have had it for several years. My Lyme doctor thinks this may be causing my bladder problems. Lyme attacks your immune system and allows you to get opportunistic infections in your bladder and other places. It also causes problems that a lot of IC patients get like fatigue, muscle pain, anxiety, and depression. I’m not saying that Lyme causes IC, it just may in my case. After I clear all my bladder infections, I am starting treatment for Lyme and I am really looking forward to it. I can finally put my finger on a problem and do something about it. I look back at myself 6 months ago when I couldn’t even leave the house and I can barely believe that was me. I am fully functional now with mild pain off and on but I notice that I am getting better every day.

So for all of you, I highly recommend getting a broth culture done if you haven’t (more than once). If your doctors are telling you that you don’t have an infection, they just might not be able to detect it. In my case, I consistently got negative lab cultures at my doctor’s office but my broth culture from UML always came back positive. Good luck to everyone in finding the cause of your own pain (as we are all different) and getting on track to wellness. It is a tremendous relief just to be moving in the right direction! Please feel free to email me if you want any details (megkelly.31@gmail.com).

Meg

[vm]

Always good to hear when folks are feeling better and better. :)

[Berkshire Road]

Hmm. I had Lyme also. I wonder...

[mich2604]

I have lyme too.

Im going to send you an email.

thanks for sharing your story with us :-)

[meg31]

It's funny that my thread was moved from "success stories" to this category. I feel as though my story is a success and I wanted it posted there to help other people who may have the same problem. So many people are resistant to the idea that infection and IC are connected. Regardless, I will keep you updated on the progress.

Meg

[PlainJane]

Meg,

I'm glad you are starting to feel better. How long do you think you've had Lyme disease for? I think I've probably had it 14 years. I also have babesia and bartonella. Do you have any co-infections?

Do you have TMJ?

Thanks for posting you story. Take care.

--plainjane

[meg31]

Hi PlainJane,

Yes, I do have TMJ. I just spent 5000 bucks on braces and procedures to try to help with that. It helped for a while but my jaw pain has come back with avengence! I think I've had Lyme since 1999. That's when I had a tick bite followed by illness (no rash). I was diagnosed with everything from mono to bronchitis to scarlet fever. Now I wonder if I actually had any of those things!

I'm so glad I finally discovered the Lyme connection to my symptoms. I owe it to you guys on the ICN who have the motivation and drive to look at alternative causes of their problems. It really gave me the heads up!

Meg

[Dean76]

For those with Lyme disease, What were you health symptoms like? Did it cause other problems beside IC?
Where is United Medical? I would like to have this form of broth culture done.

[Dean76]

Mich2604, How were you diagnosed with Lyme disease. I would like to hear from you. I am very interested because I am having the headaches and miningitis like symptoms that are making me crazy. I do have a litle brown circle on my inner thigh that I have noticed just in the past 3 years. Its the size of a dime and will get red and itch if I get in the sun or tanning bed. Im just wondering if I have Lyme disease. I have had IC for 11 years and Lyme disease may not be what I have but something has got to explain my headaches, loss of concentration and forgetfullness, insominia, and extreme tiredness. My bladder does not hurt that bad but I feel as if I have not slept in a week.

[PlainJane]

Dean76,

Besides the IC I also have extreme fatigue, insomnia, TMJ, difficulty breathing (babesia symptom), nightsweats (babesia symptoms), low cortisol. low thyroid, alcohol intolerance, "bipolar disorder", menstrual irregularities, vision problems, balance problems, ringing in my ears, "hot flashes", low potassium & low iron, among others.

I am being treated for babesia, lyme and bartonella.

~plainjane

[MarthaF]

Dean,

United Medical is located in McLean, VA. You can order a broth culture on your own - call for instructions (703-356-4422) The broth culture is extremely sensitive and can find bacteria the typical lab culture does not. Some bacteria are slow growing and even at low levels can cause problems

As to Lyme that requires another lab - the best is IgeneX in Calif. I requires a blood test so a doctor has to order it. Symptoms of Lyme cover a large range so it is hard to diagnose clinically.

Please PM me if you would like more information. The bladder symptoms could be result of the Lyme but still need to be treated if you have bacteria. I have a good recommendation for a practitioner if you do have a culture and they find infection.

Martha F

[mich2604]

Dean I was diagnosed by a lyme specialist. I had all of the symptoms on the lyme symptom list and was very sick when I walked into his office. He clinically diagnosed me and ran blood work thru Igenex labs.

I had head pressure, dizziness and my regular dr thought it was an inner ear infection, antibiotics didnt clear it up and i had a nasty reaction to the zithromax he gave me. So then he thought occular migraines. At the same time my neurologist found a very bad disc in my neck.....almost had the operation until I went to a diff neurosurgeon who told me NO way were my symptoms from my neck. I could go on and on.......my IC started after all these other symptoms were present or I would have just thought IC was just IC for me too.

My symptoms now are.....bladder burning, urethra burning, vulvar vestibulitis, burning vulva, yeast infections, plevic floor disfunction. High cortisol, low iron, low vitamin D, low thyroid, some trouble sleeping, no periods(im 31) Always starved, no tolerance for carbohydrates or sugar. Trouble with concetration, low libido. Some minor twitching, neck pain, ringing in ears. Symptoms vary from day to day sometimes min to min.

[PlainJane]

Mich,

How is your treatment going? What are you on now? Have you made any improvements?

I'm on treatment now for babesia. I also have bartonella.

-plainjane

[mich2604]

Hi plainjane,

Im doing a bit better.....Im seeing a integrative dr now as well as my LLMD. I still cannot take abx. My integrative dr just ran a bunch of tests to see what my body is lacking, and I'm taking a new supliment that seems to have given me a lot of energy.

I also started neurontin for my bladder and VV.....it really seems to be helping with the VV, which i assume was/is nerve damage from the lyme.

In some ways im a lot better then I once was, but I have a long way to go, especially bladder wise.

Did you test positive for the babs and bart? I never have but wonder if I have babs.......i hear it also likes the bladder.

[PlainJane]

Mich,

Glad to hear you're doing a little better. No I never tested positive for babesia or bartonella. The only co-infection I tested positive for was a past infection of Rocky Mountain Spotted Fever.

The doctor diagnosed the babesia based on symptoms (air hunger, nightsweats, fatigue, etc). Then when we started treating I had a big increase in these symptoms which he says is die-off almost certainly and feels we are on the right path.

The bartonella he diagnosed based on a classic bartonella rash on my arm.

My bladder isn't good. It feels irritated a lot any any amount of water just irritates it more and I have to get up to use the washroom every 5 minutes it's annoying.

~plainjane

[Dean76]

Im getting the Lyme test done. My package just arrived from Igenix today. If its not Lyme then I have must have some other type of bacteria. I am always fatigued and have on/off symptoms of depression, headaches, bodily inflamation, eyes burn, poor concentration. It actually feels like something is putting a major strain on my body. The funny thing is that my IC is not that bad anymore. I took a few months of supplements with Fiber (w/ FOS), a probiotics (for IC), colostrum, and a few other intestinal type supplements and it just about cured me (NO JOKE). I am actually drinking coffee as I type and have not done that in like 10 years. Now I am on a bigger quest to try and figure out what my body is up against (once again).
I am going to call United Medical soon.

[PlainJane]

Dean76,

That is great that you are going to do Igenex and United medical lab testing! I hope you find something helpful and a good treatment.

~plainjane

[meg31]

PlainJane-
How can you distinguish Babesia from Lyme? My doctor also thinks I have Babesia based on skin allergies and a rash on my neck. But I have fatigue, muscle pain, dizziness, poor concentration and memory too- and those are all symptoms of Lyme also. I took the ELISA and PCR test for Babesia and tested negative but my doc said they are lousy tests. How can I know for sure if I have it?? I tested positive for Lyme with both the Bowen and Igenex test so I know for sure I have that. I understand Babesia requires different antibiotics than the Lyme so I can't treat them both with one drug.

Dean7-
I'm glad you're getting the Igenex test done. It is highly recommended by Lyme specialists and hopefully it will help you get started on some answers. This is the test they used to diagnose me.

Meg

[jodi.b]

I was wondering what the difference was between the broth test the the usual urine test. my last test said I had keytones which usually indicates an infection yet I did not have one.
Jodi B

[MarthaF]

I don't know what the word keytones means in relationship to urine testing but I can explain the difference between the usual urine test and a broth test. The usual test is an agar plate test which I have looked up and copied below:

With a urine culture, a small sample of urine is placed on one or more agar plates (a thin layer of a nutrient gel) and incubated at body temperature. Any microorganisms that are present in the urine sample grow over the next 24 to 48 hours as small circular colonies. The size, shape, and color of these colonies give clues as to which bacteria are present, and the number of colonies indicates the quantity of bacteria originally present in the urine sample.

Often there can be species of bacteria that are harder to grow out or that will not show on an agar plate in 24 or 48 hours. A broth culture means a sample from the specimen in placed in a nutrient broth and allowed to stay for 3 days or more so that more fastidious species of bacteria are encouraged to grow. Nothing will grow unless it was there in the first place, but the typical 24-hour agar plate test does not capture all species of bacteria that may be present. Many times patients with symptoms are told they have "no growth" after 24-48 hours, when in fact there could be bacteria there that just don't show up after that short amount of time. Also, some species such as Streptococci or Staphylococci do not grow as many colonies as sometlhing like E. coli. But that does not mean they are not pathogenic. The key is whether you have symptoms. If you have symptoms and any amount of one of these species is present there is a possibility that even a small number of colonies is causing an infection. The pathogenicity of bacteria is not always based on the amount present. In the case of a Strep throat they do not count the colonies - if there are symptoms and Strep is found the patient may be diagnosed with Strep throat.

So, to sum up the above, a broth culture is more extensive in that any species of bacteria present is given the environment and time to grow out. It may take a week sometimes to show up. It is more time-consuming and labor intensive and labs do not prefer to do this type of culture. If your doctor orders a lab to let an agar plate grow for a week sometimes slower-growing bacteria will show up. But the broth culture is still best. The only lab we have so far that is willing to do broth cultures is United Medical Lab in McLean, VA. An early patient, Ruth ****,NP, was able to convince them to provide this type of culturing and since then they have done thousands for people all over the world. It is still valid even if mailed across the globe - there is no such thing as spontaneous generation and if a type of bacteria was not there at the time of collection it will not appear after being mailed to the lab.

The future of good testing will undoubtedly be based on DNA testing when this type of test is developed. It is already being worked on by researchers at UCLA since they know there is a need for more comprehensive testing. We are finding that there is better testing needed for Lyme Disease, Chlamydia, Ureaplasma, Mycoplasma, etc. all of which can cause urogenital problems in both males and females. Not all bladder symptoms are related exclusively to the typical UTI bacteria. I think Meg reported that that was the first thing she had checked out, but later found she had Lyme Disease which can also affect the bladder. Things are complicated and the pratitioners have to take overall symptoms into consideration when trying to diagnose

Hope this helps. I am not a medical authority but have spent over 15 years studying this area and have sponsored research into urine testing - both broth and DNA methods.

Martha

[jodi.b]

Hi Martha.
Wow what an amazing reply. I will show this to my doctor.
best regards
Jodi

[PlainJane]

Meg,

Sorry I didn't answer sooner I just saw your post now. The tests for babesia (all co-infections really) aren't reliable. That's why you really need to see a doctor who has a lot of experience with lyme disease and co-infections. You have to go by the symptoms mostly. In my case the symptoms that suggested babesia are - extreme fatigue, air hunger (this is a big babesia symptom), nightsweats, "hot flashes" and excessive sweating. But babesia can also cause psychiatric symptoms, for example depression and I also had a lot of that.

Co-infections are pretty much the rule not the exception. I hope you get it sorted out. Treating the co-infections first is key to recovery. My understanding is that you have to treat them first otherwise you will make very little improvement in the Lyme disease treatment.

~plainjane

[Vampireness]

Meg,

I've been on antibiotics for a year now, sometimes, like before I got this Klebsiella bacteria, I was feeling better and now I am on Bactrim and I thought I would feel better as it killed off the bacteria but I'm not. It happened the last time and when I checked, two new bacteria were present. So I'm wondering if it's the same thing this time. I'm tired of getting so many positive results from United and being reinfected and still have bacteria's surfacing.

I am on doing the right thing though, you've assured me. What you said "Each organism has had different sensitivities to different drugs and each time I have been treated appropriately with different antibiotics. I think this is why some people don’t have success with antibiotics- because there may be layers of different bacteria that need individualized attention. One drug may not fix everything." is true, I believe.