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My MDS: Battling Infections

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Published: Apr 9, 2014 10:38 am
My MDS: Battling Infections

In this column, I am going to tell you about my susceptibility to a specific infection prior to my mye­lo­dys­plas­tic syn­dromes diag­nosis and thereafter.

It is not a pleasant story, but it may nevertheless be of interest to other myelo­dys­plas­tic syn­dromes (MDS) patients because MDS patients are at a high risk of de­veloping infections, especially when their white blood cell counts are low.

Even before my MDS diagnosis, I had been suffering from recurrent blad­der in­fec­tions for decades. Why? Nobody can tell. About ten urologists have already seen my bladder from the inside. Many ultrasounds and X-ray examinations have been taken. Everything that could have been ex­am­ined in my urogenital tract has been checked, and I can proudly say that I have never had any negative results ever: No cancer, no anatomical obstacles, no bladder or kidney stones, and noth­ing wrong concern­ing “the hardware.”

My bladder, however, has been my Achilles heel and cystitis my foe. Although there have been longer in­fec­tion-free periods in my life, I always had to be highly attentive to possible warning signs and uncomfortable symptoms, such as the recurrent urge to urinate, so that I could start countermeasures early on.

I am an expert in taking appropriate precautions and in using non-antibiotic approaches to address the potential problem.

I drink a lot – and I mean a lot – of water, which means I have to go to the bathroom quite often. Before we travel, my husband patiently stores all locations with bathrooms in the GPS system so that they are readily available in case I need them. And, of course, I know every location in our immediate vicinity.

There are three hot water bottles in different sizes plus two grain pillows in my kitchen cupboard to provide me with heat, which relieves the pain. I have all sorts of herbal teas, goldenrod pills, and cranberries as juice, capsules, and powder sachets at hand, because each of my friends swears by one of them. Of course, I have additional alternative helpers, including homeopathic pills, in my medicine cabinet.

The jeans and trousers I wear are never too tight, and I always wear cotton or even woolen underwear. Since I know that both cold and hot weather make me susceptible to an infection, I avoid sitting on park benches, unless it’s the right temperature. Needless to say, I never go swimming in water below 77 degrees Fahr­en­heit (25 degrees Celsius), and I immediately change my bathing suit after being out of the water. I try to keep bacteria away from me by applying various hygienic measures, not too many and not too few.

To avoid irritation, I am being very cautious with coffee, acidic drinks and foods as well as hot spices. I still consult online forums from time to time where cystitis problems are being discussed to get more advice on the topic. I also patiently listen to the recommendations of my doctors.

As you can see, I am very committed to not getting an infection and therefore try to adhere to my precautions in every possible way.

Even before my “MDS career,” I have swallowed loads of antibiotics over the years, when only aggressive therapies helped me out of the dilemma.

I occasionally had to argue with my general practitioner because he only wrote an antibiotic prescription for five days whereas I knew in advance I would need one for ten. When I took the antibiotics long enough, I rarely relapsed.

I had to educate my doctors to believe me when I could tell I had an infection. On several occasions, I hurried into the doctor’s office and said that “I have an infection again,” although a simple urine test did not show it (yet). However, another urine test taken three days later would come back positive.

In 2006 my MDS kicked in. During the first years of my disease, the problems with my irritable bladder did not change a lot.

Each time I felt the slightest sign of pain or burning while urinating I started my non-antibiotic program while cursing loudly because I was afraid I would get another irreversible infection.

After three days on alternative medicine and increasing pain, I very often ended up having the necessary antibiogram done to find out which antibiotics would successfully and reliably kill the specific germ. I have taken so many antibiotics over the years that it is no wonder that I have already become resistant to some of the available antibiotics.

Due to my MDS, my leucocyte count has been decreasing steadily over the years: from the almost normal level of 4.0 x 109/L to around 3.0 x 109/L in the beginning to the range of 1.6 x 109/L to 1.8 x 109/L in the last year. That’s where I am at the time being.

Furthermore, I have acquired an immunoglobulin deficiency. It means part of the police in my body is re­luc­tant or unable to fight intruders. My response to expensive intravenous immunoglobulin therapy has been poor so far. As a result, my doctors have doubled the dosage.

So it is no surprise that the devil in disguise keeps attacking me. In 2013 I had no less than six bladder infections. Most of them were relapses, I guess. In other words, my immune system is a mess and it does not function the way it should.

My doctors finally decided that I should take antibiotics prophylactically (!) to avoid another bout of cystitis. In addition, I had to promise my doctors that once I have an elevated temperature of 100.4 degrees Fahr­en­heit (38 degrees Celsius) or higher, I will go to the hospital right away to get intravenous antibiotics.

Although I have been on prophylactic therapy for about three months now, I unfortunately caught another bout of cystitis a couple of weeks ago, which is still lingering on. I once again could feel it coming even before it was really there; when the frequency and urgency to urinate increased, I knew these tiny little stubborn germs were vexing me again.

It’s so annoying and frustrating because I try everything I can to prevent another bladder infection, but ob­vi­ous­ly it does not seem to make a difference.

I don’t get an infection because I catch a cold or because I get infected externally (it may happen that way, but it is rare). I get infected by the bacteria that reside inside my body. We all carry them; however, in healthy in­dividuals, they are controlled by the immune system.

Since the immune system is compromised in MDS patients, and in cancer patients in general, the bacteria often win the battle against the immune system.

When my immune system was still healthy, I almost always managed to go to work and do my normal daily routine with a bladder infection, with or without antibiotics. But as an MDS patient with the same infection, I feel really ill, fatigued, and weak, and I lie on my couch most of the day.

This is the open end of my story. The only answer to ineffective antibiotics seems to be a higher dosage of the same antibiotics or other antibiotics.

Patients like me are in desperate need for alternative treatment strategies. Are there any? My specialists shrug their shoulders, smile at me compassionately, and continue to monitor me closely.

A rise of antibiotic resistance is a commonly known medical problem making the treatment of serious bac­terial infections difficult and sometimes impossible.

I therefore continue to try to avoid them at all cost.

Bergit Kuhle is an MDS patient who was diagnosed with the disease eight years ago. Her column is pub­lished once a month at The MDS Beacon. You can view a list of all her columns here, and a list of all pre­vi­ous Beacon patient columns here.

If you are interested in writing a regular column for The MDS Beacon, please contact the Beacon team at.

Photo of Bergit Korschan-Kuhle, monthly columnist at The MDS Beacon.
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28 Comments »

  • Allison said:

    Hi Bergit,

    I’m very sorry to hear about your struggles with bladder infections. It must be very frustrating to feel them coming and not be able to avoid them.

    I’m sure you have already looked into this, but I’m wondering if there are other ways you could boost your white blood cell count to prevent infections? Taking antibiotics prophylactically does not seem the best way to go in my opinion.

  • Jennifer Kochman said:

    I was diagnosed with MDS RARS in 1990. My MDS mainly lowers my red blood cells, but I also have lower neutrophil and WBC counts. I have had UTI’s at times since the ’60′s. These were becoming more frequent in the last decade, despite all my precautions. My GP prescribed Premarin, and this has greatly reduced the number of urinary tract infections.

    I hope this helps.

  • Rosemary Pauer said:

    Dear Bergit,

    I have had MDS for over five years now (currently on Revlimid) and have had more urinary tract infections, and a tiny amount of blood in the urine every test. I have seen a urologist and had ultrasound for kidneys and been told “nothing sinister”. I link the infections to food, and find that if my body is too alkaline (drinking lemon juice a lot for colds) or trying the “asparagus cure”, then I get an infection. I find that the antibiotic Macrobid (nitrofurantoin) works to get rid of them quickly, so now I have a prescription and bottles at home and, as soon as I notice the first signs of one starting, I take the Macrobid and get a bottle into the lab.

    I hope this helps and that you do well. Keep drinking the water!

    All the best, Rosemary

  • Mogs said:

    I recently lost my husband to MDS after a year and a half battle against this horrible illness … this quiet, seemingly less harmless disease. I, for one, never thought that this was fatal. But it was.

  • Joey said:

    My mother in law was diagnosed with MDS in October 2013. She was a very healthy 82 year old — never been at the doctor for 35 years. She just love her garden and use to do pest control with different stuff all the time (since diagnosed garden service).

    She just finished her third month of Vidaza (7 days – 7 injections) and we inject her with Neupogen twice a week. I’m very concerned because she lost her appetite and lose a lot of weight (12 kgs) only weighing 48 kgs now. She is very tired all the time and battle to walk and cannot help herself anymore. Her doctor want to start with the next three sessions of Vidaza and we don’t know if that is the right thing to do.

    She use to get blood transfusions once every four weeks, now its every second week. She is really exhausted. Please advise as we are so confused.

    Thank you

  • Bergit Kuhle said:

    Hi Allison, it seems to be less harmful to take the same antibiotics prophylactically for a long period at a low dosage and to be infection-free (or almost) than to restart different antibiotic drugs whenever a cystitis flares up again. Thank you for your comment, yes, all this makes me feel unwell very often.

  • Bergit Kuhle said:

    Hi Jennifer, you seem to have experience with the drama … I will ask my doctors about the drug you have recommended. I already googled it, it obviously is sold under a different brand name in Germany. Thanks for sharing.

  • Bergit Kuhle said:

    Hi Rosemary,

    I know about the precautions avoiding or preferring special food. The drug I have prophylactically taken for some months now is nitrofurantoin. Did you ever have any side effects? I send the wishes of good luck back to you.

  • Bergit Kuhle said:

    Dear Mogs, I am so sorry for the loss you have experienced. Yes, unfortunately MDS is a fatal disease for the majority of the patients. Let’s stand together and hope that sometime in the near future this will be changed.

  • Bergit Kuhle said:

    Hi Joey,

    I am sorry to hear about your mum in law. MDS sometimes is hard to cope with when being over 80. Overwhelming exhaustion and losing weight are alarming signs, plus a decreasing transfusion interval. Only an expert on Vidaza can give you satisfactory advice on how the treatment should go on. I hope you are close to a Center of Excellence for MDS or to a well-reputed oncology center in order to get best practice. I wish you all the best. Take care.

  • Tom said:

    Bergit;
    I have recently been diagnosed with MDS -RCMD with my whilte blood count around 800. Started with fatigue, then bad blood work. I am reaching out because my doctor says this type of MDS is terminal and he is not in favor of a bone marrow transplant at this time. He did say that, when I progress, he will start drug therapy. I am 62 and considering getting a 2nd opinion. Your column is one of the few that I have found that talks frankly about MDS. Thanks in advance for any comments.

  • Bergit Kuhle said:

    Dear Tom, I am MDS-RCMD myself. In your age a transplant should be an option. Maybe you are not yet in the risk group to discuss it or may be that certain comorbidities exclude this solution ….what reason did your doctor give to you? Definitely a second or even a third decision is a good decision to know where you are standing. The drug therapy you mentioned, is this going to be Vidaza? Best regards

  • Jeremy Lansman said:

    Bergit

    You say your ANC is at 1.8 x 10-9/L, quite a bit above the level called critical > .500. Do you know if it is possible for the count to be near .18 and still have almost no infection problems? Am I the only one to be healthy while having no neutrophils? Do you know of any reference information on that topic?

  • Joey said:

    Dear Bergit

    Since our last discussion my mother in law was hospitilized for two weeks – pneumonia. CT scan shows spots on her lungs. Plates is zero at the moment and red cells 12 and white cells 1.4 – lowest ever – this is now after she got 4 units blood and two units platelets.She started her 4th month of Vidaza on Monday the 26th of May and her appetite is much better.

  • Bergit Kuhle said:

    Dear Joey,
    shouldn’t the counts be higher after several cycles of Vidaza? Does her doctor think she is responding to the drug?That she enjoys eating again is wonderful news. I keep my fingers cross, warm regards.

  • Bergit Kuhle said:

    Dear Jeremy,
    as far as I know well-being and “health” in blood cancer depend on the level of your blood counts AND on the condition of your blood cells. So if you have low levels, but your remaining blood cells are well-functioning, the risk of getting infected is not as high as if your remaining blood cells are a mess in shape and function (as in my case :()
    Reference information – mh – I would ask my MDS expert in the hemo-onco center, he would know. Greetings.

  • Joey said:

    Dear Bergit,

    She finished her last injection of vidaza today this was now the fourth month – 28 injections and neopogen twice a week. After todays chemo she is pale, no energy and dont want to eat or drink. I’m really concerned because she lost a lot of weight -at the moment 43kgs. We need to support her with everything now. I really dont know if we must carry on with the vidaza as there is no positive results what so ever.Her platelets stay low as well as the rest of the test. She’s nausea all the time. Please advise.

  • Jeremy said:

    Bergit. Thanks for that, and yes. It makes a lot of sense to me as I learn more about myleoproliferative disorders, and how one form of MDS can differ from another. Tonight I was thinking about how ny brother died from myleofibrosis and how improbable that is without an underlying.cause, genetic or due to toxin exposure. I urge readers to avoid to the extent possible toxins. If you want a jolt, I can send you a very recent paper which found surprising links, to, including, hair dye. Argh.

  • Bergit Kuhle said:

    Dear Joey,
    I am so sorry.
    I am not allowed to give you pieces of advice in such a severe medical case. But if it were my mum of law, I would talk to her doctor and ask him whether it makes sense to continue with the Vidaza treatment? Maybe he will suggest to let things just go their way. Take care.

  • Bergit Kuhle said:

    Dear Jeremy,
    I never have spent much time to reflect on why I got MDS. I have it, bad enough! Even if I dyed my hair one time too much, this is of no importance for me anymore. Do you think your MDS is due to toxin exposure?

  • Jeremy Lansman said:

    Bergit; Of course toxin exposure MIGHT be a factor, or a cause. As a practical matter, it seems to make no difference later in life. However, being cautious when young (something we tend not to be when young) could reduce probabilities of all sorts of ailments. I started thinking about toxin exposure while reading a Scientific American article on heavy metal exposure, especially lead. Such exposures in youth have multiple effects including immune system impairment. At the time I was hopeful that knowing a cause might lead to a treatment, so off I went, only to come to the realization that even if true, it has no relevance to treatment.

    I often see articles in the popular press, and then look for the research paper. Here is the one that mentions hair die, along with other things. http://www.landesbioscience.com/journals/epigenetics/LangevinEPI6-7.pdf I do believe that methylation will be found to explain our diseaase, and so much more. It is really an interesting topic.

  • Bergit Kuhle said:

    A very complex and difficult scientific article, thank you for this link. To say the truth I certainly have not understood all of it. I will copy it and bring it to my physician , who is specialist in cytogenetics and molecular genetics. The epigenetic approach and focus on molecular genetics will hopefully lead to new treatment options in MDS. The suspicion in my case is more that of having been exposed to radioactivity.

  • Jeremy Lansman said:

    Beergit; to tell the truth it takes a long while and a lot of work for me to understand a fraction of what I see and read. Gradually my medical-biological-scientific vocabulary and understanding is expanding. Tonight I am reading an article in Nature Health about the history and recent work on the Estein-Barr virus which cause lymphomas. Close enough. The article below even speaks to bone marrow transplantation and is not so … uh.. medical scientific. But… Shrug.*

    To be more honest, my hope of finding some route to a cure dims with every day I study. It is wonderful knowing more and having time to do this, but unless I find something, I can only join those of you who are waiting and watching.

    I am a person who likes to fix things. My body is a rather important thing.

    http://www.nature.com/nm/journal/v20/n6/full/nm0614-571.html

    * Besides the above, I have found support for viruses causing MDS. But should that be so, it is not helpful to us today.

  • Bergit Kuhle said:

    Thanks again, Jeremy, EBV is a bad one! I have known so. I am like you. I would like to fix my body. Who don’t? But since everything we go through during the course of our disease is due to accelerating processes that interact….so where do we begin?

  • Doug Oliver said:

    Hi Bergit,
    Really appreciate finding out that I am not the only MDS patient that’s getting frequent UTI’s. My MDS came about 10 years ago as a result of my getting 5 weeks of daily radiation to the pelvic area which was accompanied by 2 weeks of 24/7 ohemo in 1992. In March of last year I received a Turp. Since then I’ve been hospitalized 8 times for over 50 days due to UTI’s. In that time frame I have been given many different antibiotics and blood transfusions. In the last few months I have been averaging 2 pints of blood and I of platlets weekly. My hematologist now wants me to go on Vidaza as he’s unable to get my blood counts up from WBC 1.0 – RBC 1.83 – HGB 5.6 – HCT 16.7 – PLT 7.0. The Vidaza is due to be started next week. I’ll let you know how that goes after a few months.
    Doug Oliver, Chattanooga TN

  • Cheryl Cooke said:

    Hi all

    I also have MDS RCMD – originally diagnosed with RAEB II 10% blasts September 2011 but then when preparing for a transplant my blasts decreased without any treatment. I live with a low WCC count averaging 1.3 so far this year, and Neutrophils averaging 0.6. I also have hypogammaglobulinaemia for which I have 4-weekly IntraGam infusions (gamma globulin).

    I struggle with UTIs quite a lot, but usually manage to avoid antibiotics. I find the best thing is at the slightest hint to break 1 or 2 cranberry capsules into a 250-300 ml bottle of water and drink it. Keep doing this regularly until the symptoms go. 5000 mg Echinacea capsules are also very good if you take them as soon as any type of infection rears its ugly head.

    Hope this helps!! All the best everyone …

  • Bergit Kuhle said:

    Hi Doug,
    you’ve gone through a lot! I wish you from the bottom of my heart that Vidaza will be working for a long and UTI-free time! Yes, I like to be updated.

  • Bergit Kuhle said:

    Cheryll, thank you for your advices. Seems that your experiences with UTIs are pretty close to mine plus the – what a word – hypogammaglobulinanemia , both of us are suffering from. Are you on any more meds, what’s about Vidaza in your case or do you watch&wait as I do ?