REAL LIFE Mystery Diagnosis Part 2

If you are just tuning in, Ali, a friend of mine got super sick. No one could figure out what was wrong and doctors would prescribe a pill but not actually listen or care. I asked her to tell her story on my blog. Read part one here. Yes, many of you were correct, Ali has Lyme:


Finally in August 2005, my daughter Nikki (my hero) called me from the Turks and Caicos and told me about a disease I had never heard of, Lyme Disease. I didn’t remember ever being bit by a tick but when I went back in my journal, I found that I had gone camping just prior to getting married and just prior to the onslaught of symptoms. I had also been told it was a “spider bite.” I researched and found a doctor (Dr. M) who listened very carefully to all my symptoms and “clinically diagnosed” me with Lyme Disease. My Elisa came back negative, however my Erlichiosis and Bartonella came back positive. In fact, I was told my Bartonella titre was very high. Dr. M. told me that the Erlichiosis test indicates I was in fact bit by a tick. Thank goodness this doctor was able to begin treatment on me. While undergoing treatment (long term antibiotics) I began to slowly recover.

I went to see a new General Practitioner whom I asked if she would take me as a patient. I told her I had Lyme Disease. She agreed to take me but when I began to worry that Dr. M. would soon retire, I asked her if she would treat me. Her response was “Absolutely not.”

In the summer of 2007, I was bit by what I think actually was a spider in the garden. My hand immediately became swollen. The months following this my symptoms again began to explode. I went back to see Dr. M. and he suggested I get an MRI of my brain. I was experiencing horrible pain in my head where I thought my head was going to explode. I had a sharp pain in the top of my head one day and that night I could feel a bump. I had my husband look and he said I had clear fluid oozing from it. I was in a great deal of pain throughout my body. At this point, I was still working full-time. I lost my balance at work and fell against the classroom wall. Since it would take one year to get in for a regular MRI, my husband and I decided this was urgent and that we would be willing to pay for a private MRI. Dr. M. filled out a requisition for a private MRI.

Unfortunately, in Jan. 2008 Dr. M. was forced into retirement by the College due to treating Lyme Disease.

I went back to see my GP to refer me to a neurologist to read and interpret the MRI and to take me off work since I felt I could no longer endure the pain. When I got to the appointment (my mother came with me) my regular GP had a Locum in for her while she was on maternity leave. My nightmare got worse that day! As soon as I mentioned Lyme Disease, he would not listen to a word I was saying. He said there is no Lyme Disease. He said I was just depressed. I kept trying to tell him that I wasn’t depressed I was in a lot of pain. He finally banged out a letter on his computer and referred me to see a neurologist. My mother left the appointment in tears and couldn’t believe the way these doctors treated me. I knew I wasn’t depressed and I knew I had to find someone to believe in me. It was going to be a very long, and hard journey.

For months I began to relapse since I was refused treatment and my life once again became a horrendous journey. I went from doctor to doctor being told it was all in my head and that there is nothing wrong with me! They actually laughed in my face. I am an educated human being. Here in Canada the doctors only rely on the Elisa for diagnosis and refuse to do a western blot if the Elisa test is negative. Since my Elisa was again negative, doctors would not believe me, treat me, and were unbelievably unprofessional. In August 2008, my husband Gary whom feared he was going to lose me to this disease took me to the U.S. There I found a Lyme Literate MD who confirmed the diagnosis of Lyme Disease and began treatment for that and Bartonella, which is all out of pocket. He was appalled that the British Columbia medical system would allow me to become so ill and do absolutely nothing to find out what was making me so violently ill. It is now estimated that I have spent upwards of $100,000 out of pocket to get my life back just in the past 2.5 years.

Where am I now?

I’m doing pretty good with my Lyme Disease. I am now off antibiotics and taking natural microbials. Since going back to work full-time, unfortunately my thoracic problems have signifantly increased. Since my Thoracic Specialist and I now feel that I am strong enough, we are exploring the option of surgery. I have very little use of my right arm (dominant hand) and if I continue on this path there could become permanent nerve damage. I am really hoping within the next year, I will be able to have this repaired and that I make a full recovery. I have been explained all the positives and negatives of this surgery and I have chosen to proceed. My goal and my dream is to be able to hold my grandchildren. That, I would not be able to do today.

(Note from Holly: Hear that Nikki, your mommy wants BABIES. Get to it!)

My hero (my daughter) saved me from this disease. Nikki’s and Garry’s love was always unconditional even in my darkest days. My blog is called Healing Waters because I truly believe having the opportunity to spend time with Nikki and soaking in the beautiful turquoise waters allowed me the peace and tranquility I also needed to heal. I will be forever grateful to them both! I love them dearly!


What Parents Need to Know :

Please look at this website to see how to avoid tick bites, risks, prevention, and ways to remove a tick!

You need to ensure your child is protected against ticks and that you do a thorough tick check every time you come in from the great outdoors. That means every nook and cranny possible (between their toes, in private cavities, belly buttons, armpits, ears, behind their ears, throughout their hair). Ticks like to crawl to and feed in warm, moist areas of the body.

A tick can be the size of the period at the end of this sentence or a poppy seed. This is the nymph stage. Hard ticks are flat but as they feed they become like a raisin.

Ticks need to be removed ASAP. The sooner you remove the tick the less likely for disease to be transmitted to their host ie. your child, you, or your pet. If you are not comfortable removing the tick yourself, take immediately to a doctor to have it removed. KEEP THE TICK IN A LABELLED ZIPPERED BAG WITH THE DATE, WHERE ON THE BODY IT WAS REMOVED, AND PLACE THE HITCH-HIKER WAS MOST LIKELY PICKED UP! KEEP IN FREEZER IN CASE YOU NEED FOR PROOF DOWN THE ROAD!

Personally, I would insist on antibiotics for my child if the tick was attached (if the doctor refuses, ask him/her what they would do if this was their child)!

Tick removal tools would be a great addition to your first aide kit! You can purchase those probably at hiking stores or online. The one I keep with me is called Tick Twister.

Children can get Lyme Disease.

Mothers can pass on Lyme disease through the placenta to their unborn child.

Don’t ever think this can’t happen to your child! I am not a hiker and I only went camping that one time. So please, Stay Safe!


Helpful links:
www.canlyme.com
www.ilads.org
www.underourskin.com
http://www.lymedisease.org/
Just recently (end of March 2011), through the Freedom of Information Act, an individual was able to have a document released which is a report the government of BC did on Chronic Lyme Disease back in May 2010 by Dr. Schmidt. Please read this important document for all those who may one day suffer from this horrific disease. http://www.canlyme.com/Schmidt_2011.pdf

May is Lyme Disease Awareness Month so please educate yourself and others about this disease so you don’t ever have to take the journey I and many others have been on!