On Lyme Disease

DISCLAIMER: All I say here is my interpretation of what my doctors have told me and what my mother and I have researched.  This is my understanding of Lyme at this time.  I could be very wrong, I could also have some conflicting views from you.  Please feel free to correct me or teach me something you know about Lyme because I am still very in the dark. 

I feel the need to blog because I find it calming.  I had just learned to stand on the rug that was my fibromyalgia diagnosis, but it seems that rug has been pulled out from underneath me and a new, bumpier, uglier rug shoved in its place.  (please try to understand that metaphor if you can) 

"Lyme Disease is a borreliosis, an improperly tested for disabling disease that has for decades been an under reported, poorly recognized serious threat to the health of Canadians, tourists, outdoor enthusiasts, and our businesses who employ outdoor workers – Lyme disease is on the rise in Canada, yet diagnostics, treatment, physician and public awareness are largely inadequate." -- Canadian Lyme Disease Foundation (canlyme.com)  

From what I understand you get Lyme from a tick bite.  A certain kind of tick carries a bacteria that can infect dogs, horses, people etc. Some people get a bulls eye rash at the spot of the tick bite.  

Because I don't recall being bit and did not have the rash, my family doctor said there was no chance I had lyme.  CanLyme says "Although rashes are fairly common, only 30% of Lyme patients report experiencing a rash, and only 9% develop the classic “bull’s eye” rash."

Symptoms from CanLyme that I have include:

• Stiff or painful neck
• oversensitivity to sounds
• Diarrhea
• Upset stomach (nausea or pain) or GERD (gastroesophageal reflux disease)
• Bone pain, joint pain or swelling, carpal tunnel syndrome
• Stiffness of joints, back, neck, tennis elbow
• Muscle pain or cramps, (Fibromyalgia)
• Tremors or unexplained shaking
• Burning or stabbing sensations in the body
• Fatigue, Chronic Fatigue Syndrome, weakness
• Pressure in the head
• Poor balance, dizziness, difficulty walking
• Increased motion sickness
• Light-headedness, wooziness
• Mood swings, irritability, bi-polar disorder
• Disorientation (getting or feeling lost)
• Feeling as if you are losing your mind
• Over-emotional reactions, crying easily
• Too much sleep, or insomnia
• Difficulty falling or staying asleep
• Panic attacks, anxiety
• Memory loss (short or long term)
• Confusion, difficulty thinking
• Difficulty with concentration or reading
• Going to the wrong place
• Difficulty finding commonly used words
• Stammering speech
• Forgetting how to perform simple tasks
• Loss of sex drive
• Unexplained menstrual pain, irregularity
• Extreme fatigue
• Symptoms seem to change, come and go
• Pain migrates (moves) to different body parts
• Early on, experienced a “flu-like” illness, after which you have not since felt well

That's about half of the symptoms listed on CanLyme, but all things I experience.  

A sample chronicle of symptoms is: rash, flu like symptoms, vertigo/dizziness, pain, terrible other symptoms. 

Following this, i missed the rash, had flu like symptoms at the end of my first year of university, had vertigo all summer after my first year, and then developed chronic pain and fatigue.  Which means I have probably had lyme for a year and a half.   

Testing for Lyme is tricky.  The Canadian test (which I originally got) is usually negative if you've had Lyme for more than a couple weeks.  The American test are different and have a much smaller false negative rate (this is the test (complete lyme panel) that i have a positive result for and am awaiting a doctor to explain the test to me).  Some doctors believe after the initial period the symptoms are a result of the damage done by the Lyme, and they move to treat the symptoms as it is useless to treat the Lyme.  Other doctors believe antibiotics should be used indefinitely to combat the Lyme.  The problem with that being, here in Canada, antibiotics can only be prescribed for a short period of time.  Lots of doctors have lost their license for trying to treat lyme in this way.   

More on treatment: I think most doctors agree early Lyme should be treated with antibiotics.  And sometimes Lyme needs several rounds of antibiotics to take a beating.  If the Lyme isn't taken care of early, Chronic Lyme Disease sets in (which is what I believe I have).  From what I hear, treatment is nasty.  The antibiotics make you feel 10x worse than your worst day with the Lyme. Bedridden with pain, and extreme nausea are things I have to look forward to.  They call it the herx reaction.  Google says "A Jarisch-Herxheimer Reaction (often called a Herx for short) is the reaction that your body gets when there is a spike in die offs from the Lyme disease and associated co-infection bacteria."  So the pain means it's working.  Just gotta see the light at the end of the tunnel and get through it.  

Co-infections- as far as i know, you may get lucky and not just get Lyme but get another infection as well.  This makes treatment even suckier (and symptoms can be different).  Hopefully those tests are negative when i get them back next wednesday (If i was tested for them, I'm not sure). 

So that's the little I know about Lyme, and I'm probably wrong.  I'm feeling very bitter today because tomorrow is my birthday and I feel as though I got a Lyme diagnosis as a gift.  Lucky me. Mom thinks this is good because whereas the fibro was untreatable, Lyme can be treated.  The way I see it is that I now have a long road ahead of me fighting to get treated for something lots of doctors don't believe in and even more doctors won't treat for fear of losing their license.

I really wanted to get back to Kingston for second semester but if I have to find a different doctor, or wait to be referred, or fight with my family doctor and then go through a herx, I don't know if I have enough time between now and January to get all the medical stuff done I need to.   Which will set me back another semester.  Which means I'm 2 years behind, which means I'm not graduating with my friends and I've got a lot of schooling left.  I'm trying to stay positive but its really effing hard.  Maybe with treatment the brain fog will go away and I'll be able to raise my grades? That would be the dream. 

Anyway, I'm going to sign off before I make myself cry.  Thanks for reading, 

Jess