Medical Confessions, part one

In a few of my past posts I have been vague regarding a few of my medical problems and have done so on purpose. I now feel it’s time to disclose details of the mystery, my journey and hope it will possibly help others.

In 2005, when I left the hospital in Pennsylvania with a spinal cord injury and began the battle to uncover what was wrong, I didn’t know I was also leaving the hospital with another problem that would be as difficult to diagnosis and treat as my spinal cord injury. The problem: Methicillin Resistant Staphylococcus Aureus, or more widely known as MRSA. As you may know, MRSA is a staph germ that doesn’t respond to most antibiotics and is quickly becoming one of the most dangerous infections to the general public since there is no cure.

Doctors believe while I was in the Operating Room I was infected with MRSA and it settled in my sinuses — a weak area in my body since I broke my nose when I was young and have had several sinus surgeries due to complications. Left untreated since my spinal cord injury, the MRSA invaded my body and continued to advance and ultimately moved into my left frontal sinus (the sinus cavity closest to the eyes, brain and forehead).

I was having constant sinus infections, but would take a two- or three-week course of antibiotics and would feel better and thought it was under control. I am also a big believer in using a Neti Pot to flush out the sinuses, so I was continuing to do this regularly. Dr. Liar was pumping me full of steroids, which also kept down the inflammation and kept me from feeling the full MRSA side effects. I began seeing a new Ear Nose and Throat (ENT) doctor in New Jersey since my current one was retiring and he was perplexed as to why I was continuing to get reoccurring sinus infections despite antibiotics, steroids, etc. He sent me for CT scans, x-ray’s, did nasal swabs to test for fungus and other infections and all tests came back normal.

During the next few years I would see numerous sinus experts at Johns Hopkins, University of Pennsylvania and a host of other top-notch hospitals. I had so many physicians, students, residents and others look into my nose and sinus cavities and say such odd statements that if I had a dime for each one I would be a rich woman. Many wanted to operate, some sent me to other specialists, and many said there was nothing they could do.

And then I met ‘Rock Star’ Dr. P. at the University of Pennsylvania Hospital in Philadelphia. My husband nicknamed him since he has groups of students following him and feed off his every word. The day we met him we understood why. He is brilliant. He took one look at my left sinus and said “you have MRSA somewhere in your sinuses. Classic case. Let’s do a CT scan and a swab (like none I had ever had done before) while you are here, start rinsing with this ‘recipe’ and I will call you with the results within a few days.”

A few days later, Dr. P. confirmed I did indeed have MRSA and began a treatment of antibiotics. The swab results indicated that there were two antibiotics that would ‘kill’ the MRSA and along with it, yes, you guessed it, he prescribed steroids.

I could go into pages of details regarding this three-year battle. How I ended up being allergic to many of the antibiotics they prescribed, how the MRSA-resistant antibiotics didn’t work, EVER. I could write about the office visits with the Infectious Disease doctor to consider having I.V. antibiotics, but it was decided I wouldn’t be a good candidate due to my past A-fib and flutter problems. I could also go into detail about the course of antibiotics costing $6,000 and how I didn’t leave the house for three weeks due to stomach problems and had to take two other medications so I could take the antibiotic. I could also discuss the abundance of yeast throughout my body from all the medications. Or, I could simply explain how my body began to shut down…partly from the MRSA, and from too much medication. I blew up from all the steroids, yeast, antibiotics and when I looked in the mirror I had no idea who I was. And, along with a spinal cord injury, MRSA, I now had Cushing’s Disease, was diabetic and didn’t know it. I was a time bomb and if certain things didn’t happen the way they did I honestly believe I wouldn’t be here today.

Following our move to Virginia in 2010, two very important doctors entered my life — I have written about both in previous posts. God sent me to these two special people since these two doctors would end up saving my life. Remarkably, one cured me of MRSA; however, that information will be in part two of this post. Stay tuned.

©My Unplanned Life and www.shakinguplife.wordpress.com 2012.

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About mswd

I am an individual living with a spinal cord injury. How the injury occurred, how I found out how severe my injury was and how my planned life suddenly became 'unplanned' is included in this blog. Also included is how the injury has tested my family and me. I believe you will discover it has been both a mentally and physically challenging ordeal and I learned a few lessons along the way. While I am still defining my life’s purpose since the injury, I have uncovered those who are injured, live with pain or have other obstacles to navigate are never able to escape. However, come with me as I explore ways to improve my life, learn to live with multiple neurological conditions, educate others and look for the silver lining. I believe with a little willpower, my caring family and God's guidance I will learn to forgive, hopefully forget how I was treated and dismissed by a doctor and uncover life's new purpose. I pray for painfree days and answers to questions that keep swirling through my mind. I also pray for a cure for neurological conditions and for the doctors to treat their patients with respect. Welcome to my journey. I would love to hear about yours!
This entry was posted in Atrial Fibrillation and Flutter, Curing MRSA, Dr. Liar, Heart Condition, Self Discovery, Spinal Cord Injury and tagged , , , , , , , , , , , , . Bookmark the permalink.

11 Responses to Medical Confessions, part one

  1. Geez Louise Marsha!!!! What a journey. I hope this does help others. What a nightmare. And how incredible you are for writing this and telling the story. We truly do need to be proactive in our own health care. You are amazing.

    • mswd says:

      When I tell people I have been to Hell and back…I mean it (and most think I was only talking about the spinal cord injury)! It has been rough and the treatments…wait until you read about that ordeal. However, I am cured and THAT is what I want people to know. My ENT needs 20 more cases like me and he will go public with his treatment plan. He is spitfire and not afraid to buck the system. And, my endocrinologist, well…I can’t write about him without crying. These two doctors gave me back my life. I didn’t tell people about my active MRSA since they expect to see ‘flesh eating bacteria’ and even I got tired of hearing about my medical problems! Thanks for your message Colleen…you are so sweet! XO

      • Monica Stuchlik says:

        My brother in law has MRSA in his sinuses and is near death because of it. How can I get him to your ENT?

      • mswd says:

        Monica ~ I am so sorry I haven’t responded sooner. Somehow, this message was sent to my spam folder. Please send me another message with your email address and I will respond immediately with my ENT’s contact info. Your email won’t be public since I have to approve each message before it is posted. My ENT has gone public with his MRSA-protocol so there may be a handful of doctors in other locations. Again, a million apologies!

  2. Marsha, I feel bad for you. I found out I had diabetes after Kim passed away. I was so focused on her for so long, I ignored everything else. I wanted to be a doctor when I was young and I’ve now realized that infections are very easy to get and get rid of with diabetes. I think the bacteria (staph mostly) take advantage of the sugar in the bloodstream and they grow faster with the beefed up food source. Steroids are prescribed so much because they mask symptoms and the patients stop crying out to the doctor for relief. I hate it. I wish we could just drink water and eat cucumbers e.g. for a week and immediately start feeling better.

    I think the secret would be to: 1) do what’s healthy for you, and then 2) focus our efforts on truly serving others. We could forget about our problems and get healthy at the same time. It sounds easy but I do know that when I was worried about Kim, I sure forgot about me. If I was eating right and exercising when I could would have helped.

    Patty and I have bikes and now that she’s had two total knee replacements since we’ve been married, we’ll start riding I think. Some people never expose all about themselves personally but I think you may show people that our health plan needs to be our own and not our doctors. The same thing goes for my classical music. I have a PHD violin instructor in Cary but I drive my learning program.

    Hang in there. You’re brave and you’re strong. And, I do believe God has a plan for us all.

    • mswd says:

      David ~ thank you for your message and sharing your story. It is so difficult to be the patient, but even harder to be the caretaker. I shared a post written by another caretaker of a spinal cord injury patient since she and Harry deserve awards for what they deal with on a daily basis. One can only imagine what you went through with Kim and I am know there is a special place for you in Heaven! Because I developed Cushing’s Syndrome I have learned so much about the body and cordisol levels and what it does to adrenal system. I am sure your cordisol levels were out of control, thus causing you to become diabetic…a lot like my situation. Not to scoop the second part of my post, but my doctor just recently cut my meds in half and feels I am on my way to becoming non-diabetic. But it took two doctors…my endocrinologist and an ENT to work very hard and to care enough to want me to get better. And, more importantly, I had to want to get better. I also had to do things I didn’t want to do, which I have written about in part two of the post. Biking is great…in fact, I have an adult trike since I can’t balance a bike, and it’s a lot of fun. Harry and I ride.

      You hit the nail on the head — you have to manage your own health on a daily basis. If you don’t it gets out of control and can do so quickly. Sadly the doctors at some point begin to only care about advancing their careers and working the system. I saw this first hand via Dr. Liar. However, the first step is awareness, the second education and the third is taking control just as you mentioned. I feel as if all of this has happened to me so I can help make someone else’s life better. So I write, post and share. And, in some small way if my story prevents someone else from going through what I did…then it was worth it.

      Thank you again for your ongoing support and I wish you continued improvement with your health and enjoyment with your music. As you know, life is too short not to be filled with the things that make it beautiful. Sending you and your family love and blessings!

  3. Danielle ponticelli says:

    Where is part two? My mom has mrsa. She going throw alot of the something. Her is worse and I we cant find her a doctor. I wanted more information on your life saving doctor. Thank u for your story. It gave me a lil hope

    • mswd says:

      Thank you for your message. I have included a link to the second part of my post on medical confessions. Hoping the information will be helpful. Please let me know if you have additional questions. Hoping your Mom feels better soon. As you know, MRSA is such a difficult infection; however, you are making progress by looking into it on your own. Doctors are busy individuals who don’t always look into alternative therapies. Thinking of you and your Mom. https://shakinguplife.wordpress.com/2012/09/16/medical-confessions-part-two/

  4. Ginger says:

    This sounds very similar to my sisters current and ongoing problem. She is 35, diabetic, and have major sinus infections that cause debilitating headaches and her lt eye to swell shut. After 3 surgeries, 2 ENT’s, strenuous Infdctiius Disease appointments, no ins us helping. She’s now using essential oils, vitamins of many kinds, net tiptoes, steroid nasal sprays, etc!

    Please tell me what to do to help her! This has been going on for approx 2 years without relief. I can’t tell you GPS many cultures she’s had done an his many different kind of IV antibiotics she been on long term (which is not good)! She had had 3 picc lines and was off for a month to get last round of infusions which did not help. She us a single mother of 3 that need their Mommy back to her healthy happy less pain stricken self!!!
    Thanks do much in advance!

    • mswd says:

      Thank you for your message Ginger. I am going to email you the name of my ENT in hopes they can refer your sister to a physician doing the treatment in her area. The last time I saw him for my yearly followup appointment, he said he has presented his research at several ENT conferences and other doctors were treating patients with the same procedure. It worked for me and a few others who have written to me are also reporting successful results. Look for my message and let me know if you don’t receive it. Praying for your sister!

  5. Pierre de Villiers says:

    I am from South Africa, Cape Town. My name is Pierre and I am a carrier of the MRSA germ/bacterium.
    At this moment I am busy writing a book, telling my story. For five years I was bullied away by all doctors. Thousands of tests were done, including scans. My complaint was from day one that I had a pain on my chest, being dizzy, heavy headaches, never feeling well, depressed, etc. etc. I went to a dentist, complaining about the tooth in line with my right eye, nose and ear. A CAT scan showed some spots and ‘white matter’. The physician stood in front of my hospital bed, explaining to me what he saw on the X-rays. “You might become blind in your right eye, turn deaf and even become paralyzed.” This was shocking news. I became more and more ill and had know ‘driving’. I could not pick up a spade, so drained I was. I kept on telling my GP and physician that I had a problem in my tooth in line with my nose, eye and ear.
    I decided to ask the dentist to take X-rays of all my teeth. What he explained was exactly what I was complaining about. The bone of the root of that tooth was 10% ‘eaten’ away. Then I went to an eye specialist, because I had severe inflammation in my face, but especially the eye lids. She gave me a letter to proof the inflammation.
    You will be shocked if I would tell you all the names I was called. My GP, that stayed near me, told my wife that I had severe psycological problems and that I should be booked in to a clinic to be observed. When my wife said that I would never co-operate, my GP said, “but Nicky, then we get the police to take him. I was shocked when I heard about this idea.
    With two results I was looking for, the tooth and inflammation filed, I started looking on the internet, hoping to find something. Because I had a fungus in my one toenail, I googled fungus. There I found MRSA fungas. Knowing nothing about this MRSA thing, I read through some documents. In one document I learned about the MRSA germ in the nose. Immediately I knew that this had to be “it”.
    I called a physician and asked for a swipe in my nose. After five years of trauma, I within 48 hours learned from the physician that I had this dangerous bacterium in my nose.
    I reported my GP and the one physician to the Medical Board. I received a letter where they accept my complaint, but also said that there was no bridge of care.
    Since this incident, all patience in South Africa must be tested for MRSA, before going for an operation.
    Now I sit with an even bigger problem. I am transferring this ‘thing’ to other people, of which some had died, but again doctors tell me that I should go and see my psyci.
    I see the tragedy unfolding, but still everybody thinks I am mad.
    What should I do????!!!

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