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Nocardia - A Tough Battle - A New Motto

Aug 13, 2009 - 15 comments
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Many of you are aware I have not been online as much lately and it is due to some escalating personal, financial and health issues.  My new motto is .. “Anyone can give up, it's the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that's true strength.” ~ Anonymous

On an annual scale of stress and life events .. mine is off the chart .. however, it would do no good for me or to others to give in and completely fall apart.  I have days where I cry, but more days that I am happy.  On both types of days, I remember to count my blessings .. and they are many!  

I thank God for waking up each day and having another opportunity to better myself and help others, for Kalista's continuing chemotherapy and remission, for the many friends I have on MedHelp who have been so supportive, kind and encouraging, for a few special friends I talk with daily that keep my spirits up when the going gets tough, for the stranger .. a lady .. who stopped me in the elevator and said, "I don't know why you are crying but it is clear to see you are upset .. " and gave me a huge hug, to the love and close relationship with my daughter, that I still have my mother in my life, that life and people are good if you open your eyes and heart to it.

Throughout the challenges of the last year ... Meeting 3 new siblings and the emotions that have come from that are joyous and disheartening as I have two brothers who have accepted me and a sister who will not, losing a job with the American Red Cross due to national downsizing of over 1,200 workers, the anniversary of dad's death, starting a new job with Marsh, repeated seromas from my tummy surgery, my daughter's divorce, Kalista's leukemia diagnosis, losing my job as it was outsourced to India, Michael's death and sorting his belongings, Mom's TIA and failing health, my sister's macular degeneration, which is leading to blindness, unemployment, financial difficulties, refrigerator quitting and spoiling all the food (now have a refrigerator and food), air conditioner leaking and ruined kitchen floor (now fixed), abdominal abscesses and misdiagnosis x 4 .. to a final diagnosis of nocardia -- to a year's worth of antibiotic treatment and continuing issues of cellulitis and abscesses, to severe depression and hospitalization for a week, to bankruptcy, to the shingles disintegrating on the house, the two garage and the barn .. I am doing my level best to stay positive.  

I am hanging in there but unable to be here as much as I'd like.  Have a culture tube at home waiting for one more area to break open.  The Infectious Disease doctors at the University of Iowa are seeing me again on Monday .. so hopefully I'll be getting a few more answers and a better understanding of this then.

Thankfully, thus far, mine appears to be a primary skin infection, which is even rarer .. but the better option.  The picture attached is of the area of three lesions, all of which have been drained before.  The top one is flairing with cellulitis and there is an area in the middle with fluid.  The dark lines directly below it, are healed scars from the previoius Incision & Drainage of those areas.  There is another healed area on my left hip that continues to flare off and on.

I've gone from one pill a day for mild hypertension ... to taking 15-18 pills a day (depending on pain) ... and I am looking forward to a time when it will start decreasing.

My daughter and grandchildren are coming tomorrow and spending the weekend so between being tired due to the drain on my health and the medicines, and their visit, I will probably not be online until Monday.  It is my fervent goal to then start setting some regular time to be online again and try to start reorganizing my life to do what I want to do and need to do in conjunction with my illnesses.

Thanks again for always being there and for taking care of each other.  I love you ....


For those of you who want to know what this disease is .. as most doctors are not aware of it ..
THIS INFORMATION ON NOCARDIA INFECTION IS FROM THE NATIONAL INSTITUTES OF HEALTH ...
Medical Encyclopedia: Nocardia infection

URL of this page: http://www.nlm.nih.gov/medlineplus/ency/article/000679.htm

Alternative names  
Nocardiosis

Definition  

Nocardia infection is a rare disorder affecting the lungs, brain, or skin. It occurs mainly in people with weakened immune systems.

Causes, incidence, and risk factors  

Nocardia infection is a bacterial infection that usually starts in the lungs. It then tends to spread to other organ systems -- most often the brain and the skin. It may also involve the kidneys, the joints, the heart, the eyes, and the bones.

Nocardia bacteria are found in soil around the world. You can get the disease by inhaling contaminated dust or if soil containing nocardia bacteria gets into an open wound.

While individuals with normal immune systems can get this infection, the main risk factors for getting nocardiosis are a weakened immune system or chronic lung disease. People on long-term steroid therapy, those with cancer, organ or bone marrow transplants, or HIV/AIDS are at risk.

Symptoms  

Symptoms vary and depend on the organs involved.

    * Lungs (pulmonary nocardiosis):
          o Chest pain when breathing (may occur suddenly or slowly)
          o Coughing up blood
          o Fevers
          o Night sweats
          o Weight loss
    * Brain (cerebral nocardiosis):
          o Fever
          o Headache
          o Loss of neurological function (depending on the part of the brain affected)
    * Skin:
          o May become chronically infected (mycetoma) and develop draining tracts
          o Ulcers or nodules with infection sometimes spreading along lymph nodes

Some people with nocardia infection have no symptoms.

Signs and tests  

Nocardia infection should be suspected in people with lung, brain, or skin symptoms if they also have a condition or conditions that weaken the immune system.

Nocardiosis is diagnosed using tests that identify the bacteria. Depending on the part of the body infected, testing may involve taking a tissue sample by:

    * Brain biopsy
    * Bronchoscopy
    * Lung biopsy
    * Skin biopsy
    * Sputum culture

Treatment  

Long-term antibiotic therapy (usually with sulfonamides) for 6 months to a year (or longer depending on the individual and the parts of the body involved) is needed to treat nocardia. Frequently, chronic suppressive therapy (long-term, low-dose antibiotic therapy) is needed.

In addition, patients who develop abscesses caused by this infection may need surgery to completely drain the abscesses.

Expectations (prognosis)  

How well a person does depends on the parts if the body involved. There is a significant death rate if more than one site is involved (disseminated nocardiosis). In addition, an individual's immune system plays a large role in how well they will do.

Complications  

Complications of nocardial infections vary depending on what parts of the body are involved. Certain lung infections may lead to scarring and chronic shortness of breath. Skin infections may lead to scarring or disfigurement. Brain abscesses may lead to loss of neurological function.

Calling your health care provider  

Notify your medical provider if you have any of the symptoms described above. These are non-specific symptoms that can have many causes other than nocardial infections. If you have lung, skin, or brain symptoms -- particularly if you have a weakened immune system -- tell your doctor. You will need to be evaluated for several potential infections, including nocardia.

References  

Sorrell TC, Mitchell DH, Iredell JR. Nocardia species. In: Mandell GL, Bennett JE, Dolin R, eds. Principles and Practice of Infectious Diseases. 6th ed. Philadelphia, Pa: Churchill Livingstone Elsevier; 2005: chap 252.

Southwick FS. Nocardiosis. In: Goldman L, Ausiello D, eds. Cecil Medicine. 23rd ed. Philadelphia, Pa: Saunders Elsevier; 2007: chap 351.

Update Date: 9/28/2008

Updated by: Linda Vorvick, MD, Seattle Site Coordinator, Lecturer, Pathophysiology, MEDEX Northwest Division of Physician Assistant Studies, University of Washington School of Medicine; Jatin M. Vyas, MD, PhD, Instructor in Medicine, Harvard Medical School, Assistant in Medicine, Division of Infectious Disease, Massachusetts General Hospital. Also reviewed by David Zieve, MD, MHA, Medical Director, A.D.A.M., Inc.

The information provided should not be used during any medical emergency or for the diagnosis or treatment of any medical condition. A licensed physician should be consulted for diagnosis and treatment of any and all medical conditions. Call 911 for all medical emergencies. Adam makes no representation or warranty regarding the accuracy, reliability, completeness, currentness, or timeliness of the content, text or graphics. Links to other sites are provided for information only -- they do not constitute endorsements of those other sites.

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by Cheyenne_08, Aug 13, 2009
Wow, you have had a lot to deal with! The good news is you finally have a diagnosis and can start moving in the right direction! I am so sorry that you have had such a horrible few months, but I hope things turn around for you! Much love :-)

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by Ranaesheart, Aug 13, 2009
My diagnosis is felt to be from my tummy surgery (panniculectomy with muscle tightening) and may be a complication of the procedure, the aspiration or spontaneous rupture of a seroma .. and the nocardia bacteria entered my abdomen.  It is slow growing and grows in almost all temperatures .. thus taking some time before presenting in the abscesses that formed.  

Oh .. and while the refrigerator is fixed .. the floor is wavy and makes a good race track for the kids to jump little cars over ... built in ramps.  ;)

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by KalynS, Aug 14, 2009
I am sorry for everything that you have been going through. I greatly admire your strength and positive attitude you are able to keep while all of these things try to pull you down.

I hope that now they have given you a proper diagnosis that they will be able to get you healthy and back to where you want to be.

Enjoy your time with your grandchildren and have a wonderful and happy weekend!!!!

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by Barb135, Aug 14, 2009
Ranae - I'm glad to see you back online for the update.  Please don't worry about MH - the community will still be here when you get back on Monday (or whenever).  I hope you have a wonderful weekend with your daughter and her family.  

I read with great interest the information you posted in your journal regarding Nocardia.  The main thing that "jumped out" at me was the referrals to the "weakened" immune system.  Please ask your doctors to keep a check on the various endocrine organs - most certainly your thyroid and B12 levels....I don't know how much you know about Hashimoto's Thyroiditis, but it's the autoimmune version of hypothyroidism and with all the antibiotics you are taking, it could surface at any time and it, also, can cause fatigue, depression, muscle/joint aches, along with a whole "laundry list" of other symptoms. In other words, it can totally wreak havoc with your life all by itself, so I'd hate to see it added to the problems you've already had and not be caught/treated right away.  And with the stress you have endured this past year, you might ask to have your doctor keep a check on your adrenals as well.  

You are aware that I suffer from both the thyroid and pernicious anemia issues and the problems they have caused me --- and *I* haven't had anything like what you've had to deal with.............

Please do take care of yourself and we do look forward to having you back on the forum soon.  Again, enjoy the time with your daughter and her children - it's wonderful to have such a great relationship with them.  I'm sure the kids will enjoy those "built in ramps"...........lol

Take care................................Barb

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by ChitChatNine, Aug 14, 2009
You are a very brave, strong woman and thank you for sharing with us Ranae.  We're here for you anytime.

C~

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by Ranaesheart, Aug 14, 2009
Heading out the door to the ER again!  Just talked to the Iowa City doctors and they want this new lesion aspirated and sent for culture.  They want me to return to Broadlawns and gave me the doctor's name, phone number and pager number to call and he will instruct them exactly what to do (which is what I tried to tell them yesterday).

They ALL KNOW ME there and I've only been seen once.  This is so rare, they presented me to Grand Rounds!  

Will let you know when I get back .. how it went.

Thank you for your continued love and support.  And, Barb, I've added your questions to my list for the Iowa City Infectious Disease docs on Monday.  

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by TrudieC, Aug 14, 2009
Good luck Ranae!  I, too, was concerned when I read about this, that your immune system is compromised in some way and it is important to know why.  Thank goodness you have some good doctors following your case.  I pray for a full recovery soon.  Enjoy the family this weekend.

Much love, Trudie

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by holly_b, Aug 14, 2009
Anyone would feel overwhelmed/stressed out with all that you have to deal with. It's clear that you have a lot of strength having gone through all that you did. I wasn't aware of your health issues but as someone above said a diagnosis is definitely a positive step. I'm sorry you have to go through all this. I will keep you in my thoughts and prayers. Enjoy your weekend with the family.
Thinking of you,
Holly.

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by Ranaesheart, Aug 14, 2009
Well, went to Broadlawns and the doctor I saw was the one who had abused me a while back (there is a previous journal about that).  Anyway .. he said he didn't feel like there was much there to aspirate .. but he could stick it with a needle.  Explained Iowa City wanted another culture because they, like me, did not feel I should still be having new areas come.  He left the room, came back with a syringe, did not wipe off my skin and stuck the needle in .. no anesthetic.  Good thing my tummy is somewhat numb .. but he should have asked.  Still DO NOT like him!!!  Should have followed my gut instinct and said I don't want to see you and requested another physician.  The only reason I didn't is because I felt I was treading on "doctor feelings/pride" anyway that I had called Iowa City for their instructions.  I told them yesterday I was going to call because I understood they didn't want big opening like Incision & Drainage, but they did want it aspirated.  I was right.

So .. I asked this doctor to please be sure to mark for them to let the culture grow for longer than normal.  He said, they have protocols.  I said yes, but the first culture grew nothing and was discarded.  The second culture was kept and grown longer and cultured nocardia .. and they need to now they are dealing with nocardia because it can take 10 days to 2 weeks or more to grow the bacteria .. even longer with the antibiotics I've been on.  Basically, he thought it was dumb to do.

Before I left there, more purulent drainage came rolling out and I remembered the sterile swab they had given me the day before "in case" it broke at home before Monday.  I pulled it out of my purse and took a culture and put it back in the culture media.  Talked to the Iowa City doctor myself this afternoon and I am to bring it with me Monday.  Nocardia grows in anything and it doesn't matter whether it's hot or cold ... so we'll see if this sample grows in Iowa City.

So .. tummy is bandaged .. again .. and there is still purulent drainage coming out .. a lot more than I even though was there.  I am thinking that one of those "lumps" they were calling granulomatous scar tissue on the CT scan (like the incorrect diagnosis of a lipoma on the first CT scan from another hospital .. that was an abscess) ... perhaps is an abscess.  Since this disease tends to form "tracts" or "finger-like" channels, the larger one underneath may be feeding into this one.

Have so many more questions for the doctors in Iowa City.  Like .. since these obviously involve a blood supply .. what is the potential for spreading this throughout my body via my blood stream??????  

Trying to think positive and imagining each white pill I take as an army of knights in shining armour with swords .. sailing through the red waves to defeat the meanies!!!   Am also not going to stress out over this .. it is what it is .. we're doing all we can do .. and stress only causes the immune system to decline.  So no stress, get lots of rest, green tea and water, good nutritional food, medicine and doctor's appointments ... oh .. and HAND WASHING before and after .. always!

One hour till the kids are here .. got to run!   Thanks so much for all the good wishes, understanding and prayers.  You are the BEST!!!!!

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by ChitChatNine, Aug 14, 2009
OUCH.

ChitChatNine is speechless.

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by Ranaesheart, Aug 17, 2009
Just leaving for the University of Iowa to see the Infectious Disease docs at 10:00 .. it takes about 2 1/2 hours to get there.  Got all my meds, a list of questions, my CT and Ultrasound on disc and my culture.

Have had a very emotional and touching weekend with my grandchildren.  Miss Kalista had chemo on Friday and was very sick this weekend .. will write more of that later.

Love you all ...

Ranae

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by ChitChatNine, Aug 17, 2009
Hi,

Update us when you have a few mins ...  

C~

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by Ranaesheart, Aug 17, 2009
Will do .. first thing in the am.  Have had 5 hours sleep in the last 3 days .. and simply must get something on my tummy, take meds and go to bed.  Even wrote down my food today on a notepad so I can fill in my Food Diary .. and have much to share!!!!!

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by nursegwen, May 29, 2010
Hi Ranae,

Hope you are doing better now.  My name is Gwendolyn Cline and I have been a heart/lung transplant nurse for 20 yrs and had never heard of Nocardia until I was dx with the severe bacteria 5 months ago.  You are right most doctor's have never heard of this and all patients need to be proactive as you have been.  Having nocardia you know there is no quick fix.  I have have 18 surgeries on my left foot due to the bacteria and looking at possible amputation at this point.  Hope you are doing better now.  If you should ever want to chat my email is ***@****

Take Care!
Gwen

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by Phoenix_Kahuna, Mar 24, 2011
Dear Gwen

Get your teeth fixed and develop a strong immune system to fight off the cancer cells. Your life could depend on it. ALL ODDS WERE AGAINST ME. AND MY PERSISANCE AND A COMPENTENT YOUNG DOCTOR HAVE SAVED MY LIFE. I WAS LUCKY.

Pictures

http://www.google.com/search?q=NOCARDIA&hl=en&rlz=1T4ADRA_enUS402US402&prmd=ivnsb&tbm=isch&tbo=u&source=univ&sa=X&ei=UP-KTbiXIIq2sAOegP2kCg&ved=0CD0QsAQ&biw=1259&bih=512

http://pathmicro.med.sc.edu/mycology/mycology-2.htm

LONG TIME AGO SOMEONE GIVE ME A CD SHOWING HOW PEOPLE GET CANCER FROM TOOTH BACTERIA NOCARDIA. IT CAN GO TO ANY ORGAN OF THE BODY INCLUDING BONES. I DIDN'T REALIZE THAT KNOWLEDGE WOULD SAVE MY LIFE MANY YEARS LATTER.......LIKE NOW IN 2011.  

Tooth infection went to my left arm and shoulder developing sharp like tooth ache pain. I went to a doctor and told her that I had cancer in my body because people got it from a tooth bacteria. She had me move my arms which I exercised daily and prescribed pain reliever and a muscle relaxes……Not any  body scans like I asked for.

THE SAME DAY I STOPPED AT THE HOSPITAL AND TOLD THEM THAT I NEEDED SOME HELP.  I SAID THAT I HAD CANCER IN MY BODY. I SAID THAT I WENT TO A DOCTOR AND THEY JUST GIVE ME PAIN RELEIVERS AND MUSLE REALAXERS.

The lady that I was talking to on the phone in the loby said that’s what they would do there for me.  I ASKED WHAT I HAD TO DO TO GET SOME SCANNING DONE. THEN I ASKED IF I HAD TO BE ON A HOSPITAL BED DYING TO GET SCANS DONE...................THE LADY SAID.................PRETTY MUCH..............

After going to three different doctors after three of pain the bacteria developed a red painful spot under my breast

I surrendered completely. I had no worries because I already dealt with my own death when I my husband died of cancer 10 years ago. My formula: I give thanks for all of blessings.........I knew that God had a plan for me...........And I surrendered to that plan...........

I just had a surgery today. I had lumps in my breast removed and the doctor scraped it out. I feel great now. THE POISON IS OUT OF MY BODY AND I AM ON ANTIBIOTICS.



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