Tuesday, March 16, 2010

Where Do You Turn?

I wonder how much personal information to put on my blog sometimes. To me it's sort of like airing your dirty laundry. I guess that not all posts can be fun because life isn't always fun or fair. Today I am at my breaking point. I don't want anyone else to go through what I have been or am going through. It's discouraging and outrageous.

I used to be an ICU Registered Nurse. I took care of the sickest of the sick patients for over fifteen years. I am not a nurse anymore.

Back in August of 2008 I was diagnosed with Lyme Disease. Erlichiosis and Babesiosis to be exact. At the time the muscle and joint pain only minimally improved with five weeks of antibiotics. I consulted the Lyme Clinic and found out the doctor there left for another state. While at work one night, I asked another Infectious Disease doctor whom I work with what was happening with the Lyme clinic since when I called there was a four month wait. He proceeded to ask me what was wrong and after telling him I had been treated with oral Antibiotics for the Lyme-he declared me to be Lyme free and to have an underlying psychiatric disorder. He did this in front of a nurses station full of nurses and doctors. He got an earful from me. That day set off a cycle for me of mishap, distrust and poor treatment within the medical community.

I sought out the help of another Infectious Disease doctor who treated me with IV antibiotics in January of 2009 for the never ending muscle and joint pain. During this time I was having symptoms of poor memory recall, fine motor dysfunction, gross motor problems and a host of other symptoms. One week into therapy, I had an Anaphylactic reaction to the antibiotics and spent 10 days in the hospital.

The care I received during this hospital stay was appalling. Pain medication was discontinued several times until I ended up screaming at a doctor. The nurses did not know how to take care of the midline catheter I had placed in my arm at home for the IV antibiotics. The Jarish-Herxheimer reaction left me with jerky movements and in excruciating pain from a body in constant motion. The Medical Doctor taking care of me asked me when I had been to Connecticut. I didn't get the connection. Connecticut-Lyme-disease. I must have been in CT to contract Lyme disease. Apparently we don't have ticks or Lyme disease in Rhode Island.

My level of pain was constantly questioned and still is. When I complained of abdominal pain I was told it was the pain medication so they decreased my dose despite an increase in pain. My intractable vomitting proved otherwise and on day 8 I had my gall bladder removed. My team consulted Infectious Disease, Neurology (more on that later) and I had MRI's, CT scans, Lumbar punctures, endless doses of steroids, countless xrays, IV fluids and lab work. I was out of work for four months recovering from that episode.

It took me many months to even begin to feel better and I finally returned to work. However, it seemed as if any cold or illness found its way to me. If the kids had a sore throat I had Rheumatic Fever. If they had the flu, I had mononucleosis. Vague complaints once again crept in, I developed new symptoms like unexplained eczematic rashes, word finding difficulty and the pain became unbearable. The doctors dismissed most everything as viral, Fibromyalgia, central pain syndrome. I had been tested for MS, Sjogrens, Lupus, Rheumatoid, Celiac disease, stroke, mixed connective tissue disorder. I called the Infectious Disease doctor for help. She never returned my phone calls.

The one doctor in the state that has Lyme knowledge is not taking patients because... he's swamped with Lyme patients. Go figure. None of my doctors thought it necessary to pursue a lyme doctor any further since I had been treated and "cured" of lyme.

In the past year I have seen a Rheumatologist who has tried at least six different medications for Fibromyalgia. None of them have worked or have had such horrible side effects that I was not able to tolerate them.

The pain management doctor dismissed all my symptoms and declared I had Bursitis in both shoulders and hips and wanted to give me cortizone shots. I asked about other treatments. He said, No. That I had to have this done and that his diagnosis was correct. He told me I was depressed, threw a prescription at me and never asked what support systems I had in place to help me through this difficult time. I did not return to him.

I can barely drive due to pain, I cannot lift laundry baskets and I can barely get up four stairs without my legs giving out. My left eye droops and I have to use a cane to get around. My husband now does the grocery shopping and most of the cooking. I will not be able to garden this year without much assistance. Housework is exhausting and I barely sleep. My emails do make sense, I've left irons on, I have word finding difficulty and am forgetful. It has taken me three hours to write this post.

I have been labeled crazy, drug seeking and doctor hopping.

I saw the Neurologist today who accused me of being uncooperative, of giving up, of being belligerent because I questioned his treatment. He accused me of not trying enough medications at appropriate dosages. He was arrogant and demanding and did not want to listen to my symptoms or questions. He did not apologize for being rude but merely said, "Great-you got it off your chest, do you feel better now? Is there something else you wanted me to say?" I sat in his office sobbing today. It was more fuel for him that I was crazy.

I am supposed to return to him on Monday for more testing. I do not know if I will.

Through this whole course of illness, not one doctor has viewed me as a partner in my health. They all send consultation notes to one another but no one really has come up with a plan or a valid diagnosis.

As a nurse, I am appalled at what our healthcare system has become. I am dismayed that my health insurance will not pay for me to see a doctor out state to pursue this farther. I am not even sure what I am pursuing.

I am discouraged that there are no Lyme literate doctors in the state to help the vast number of us effected by Lyme disease and its after effects of pain, neuro problems and odd symptoms. I am horrified that patients are treated as if their symptoms aren't really there and when the doctors cannot find an answer you are labeled crazy. I have begun to question my own sanity and symptoms.

Thankfully, there are some bright spots in all of this. My kids are healthy and happy to help their mom. My husband never complains about having to pick up the slack. My church and the people in it are ever supportive and giving.

But I wonder where this journey will take me and why I am on it.

There will be much more to this story and the outcome is not yet known. I wonder how much more debilitated I need to become before someone sees a problem.

How much more?


Amy S said...

Bev, this is such a heart-wrenching story, on so many levels. It's horrible to be so betrayed by the medical profession when you're struggling to make it through every day. I can't believe there aren't more Lyme specialists here! Ridiculous! Have you considered going out of state? I think my office-mate ended up getting treatment at Stony Brook (since that's where we were in grad school). That's an excellent research hospital and they might have something to offer you. Wish I had something more substantial to offer you, but I thought I would suggest that. There are two women in the neurology dept (one is the acting head) who list Lyme disease (adult) as one of their specialties. I'm sure there are people in Boston, too, but I don't know anything about that!!

Valerie Willman said...

I often wonder what to put out on my blog, too. I haven't been writing on it consistently for the past three or four months because of internal (and external) stuff I (and my family) am working out. But it just didn't seem to be the right place to vent to ... but sometimes I just have to. And end up writing in "code" just to have a place to work it out. Sometimes that helps, sometimes not.

Thank you for your bravery in posting today.

As for medical care, we have basically a catastrophic policy with a large deductible, so most of our medical expenses are out of pocket. But most of our choices are CAM (complementary alternative medical) care.

I would definitely reccommend seeing a naturopath. They are so much more caring, have more time for you and have very good suggestions.

Good luck to you.

Joanne said...

Hi I just found your blog through my google alerts. I am so sorry to hear of your problems with Lyme disease, sadly it is the same the World over. Same complications of illness, ignored by doctors who could and should help but sadly are bambozelled by IDSA guidelines.

We know our pain and debility and what helps and what doesn't, keep strong and I do hope you find a good LLMD soon but I suspect that will be out of state.

In the UK where I am it is even worse with only a couple of doctors specialising privately. Many patients fly to USA for their treatment and Canadians are even worse off having to fly to USA for their treatment.

I was lucky my GP was understanding although not knowledgeable but my problems were mainly arthritis and muscle weakness and a few peripheral neuropathies.

However I am currently off antibiotics and doing ok, I can garden again which compared with a few years ago is amazing.

Best wishes keep strong and have confidence in yourself that is what will see you through despite the nay sayers.

Bargain Becky said...

So sorry to hear about your troubles Bev! I can't believe there aren't more Lyme doctors in RI! I have to admit though - I laughed a bit when I read "When have you been to Connecticut to get Lyme Disease!"

Try to stay positive and here's hoping you find a doctor that can really help you.

As far as being personal - do what feels best! I have a friend who thinks I'm crazy for posting videos of my kids on YouTube - but I don't list our location and I think of all the other millions (if not billions) of videos of other kids. She thinks it will attract child molesters. Honestly, I think I have a better chance getting stalked by a child molester taking regular walks. I continue to post and family members who live out-of-state enjoy the videos. Too each their own, I say!

The Mom said...

Thank you all for your positive feedback. I will be posting more in a few days.

Sara said...

I'm so sorry to hear of your struggles. I hope you do find some real help from the medical field soon.

mike wilcox said...

Lyme effect people in different ways, in my case the first effect was heart palpatations, then numbness down the left side of my body and throbbing right eye, dry eye, shooting pains etc.
I've read everything I could find on the topic and for my case large doses of vitamin c (6-10 grams a day)and magnesium 750mg a day and a good multi B complex( lyme uses it all up) has worked wonders. My symptoms went in reverse of when they appeared and remain virtually gone if I maintain my regimen of vitamins, exercise and sauna ( lyme hates heat)