Important Information to Take to Your Doctor

A few days ago, I read some valuable information online regarding Lyme treatment in Canada and I felt is was imperative to post it here for your knowledge. 

Let me begin by saying that Lyme treatment in Canada is a HUGE, CONFUSING, CONFLICTING, POLITICAL MESS!!!  Patients are sick and begging for help.  Doctors have no clue how to recognize or diagnose Lyme.  Some doctors will give antibiotics for a bulls-eye rash (ranging from 1 single pill to 10 days' worth...definitely not enough!), yet others tell their patients to "wait and see".  Doctors want to see a positive blood test before treating, yet Health Canada has published that Lyme diagnosis is first and foremost a clinical diagnosis based on symptoms.  Our Lyme testing in Canada (the ELISA test) is completely unreliable, yet doctors will not accept the results of private lab testing from IgeneX.  A handful of doctors are bold and compassionate and will treat patients until they are well no matter how long it takes, yet most won't due to the memory of those doctors who have been reprimanded or threatened with licence suspensions.  (By the way, never let a doctor to tell you to "wait and see".  See my previous post to know what to ask for if you have had a bite.)

The inconsistencies are unbelievable!  And the lack of knowledge of Lyme disease in the medical community is shameful.  I blame medical schools for not teaching it properly, but I also blame doctors for not informing themselves and furthering their knowledge in this area, even if it involves digging a little deeper than reading the latest medical journal that comes to their inbox.  They need to do their own digging; for example, reading the ILADS guidelines as a start, and then the publications of various learned Lyme doctors in the U.S., and maybe a book or two by some Lyme sufferers.  Because the majority of doctors have no clue what they are doing, they are actually causing HARM to innocent patients who are in danger of becoming sick with a life-changing illness that will potentially rob them of their livelihood and savings.  (I am a case in point.)

Lyme patients and organized groups have been lobbying the government, Health Canada, and the College of Physicians and Surgeons for many years.  Progress is at a snail's pace, and it always seems to be two steps forward, one step back.

I am posting 2 documents below (3 pages in total) so you can read for yourself what Dr. Nancy Whitmore, Registrar of the College of Physicians and Surgeons of Ontario, had to say recently about Lyme disease treatment.  This is IMPORTANT INFORMATION to take to your doctor if you need treatment.  You need to advocate for yourself, because no one else will, and doctors lack the knowledge to treat you correctly and advocate for you.  Ask your doctor to be treated according to ILADS treatment guidelines which can be downloaded here.  Knowledge is power, so do copy these letters for your physician and bring in a copy of the ILADS guidelines if he/she needs to be informed and set straight.

  

Have you had a tick bite? Here is IMPORTANT INFORMATION!

I am coming out of hibernation for this post because I believe it is very important to share the following information. 

Some physicians (ER, GPs) think that a ONE-TIME dose of antibiotics after a tick bite will prevent the disease.  This is FALSE, and do not allow a physician to tell you so.  It may kill off the Lyme bacteria (borrelia) in the "spirochete" form, but not the "cyst form" which can also get passed onto you by the tick.  The "cyst form" takes longer to kill.

According to ILADS (International Lyme and Associated Diseases Society), the following is appropriate treatment:

• For a tick bite with no Lyme symptoms - 3 weeks of antibiotics (doxycycline for people over the age of 8, amoxicillin for children under 8)
• For a tick bite with symptoms, such as a rash - 6 weeks of antibiotics (doxycycline for people over the age of 8, amoxicillin for children under 8)

Look it up in the ILADS treatment document in the link above and take the document to your physician.  To help you advocate for yourself, I urge you to watch this brief video below (on Facebook) which will help you arm yourself with all of the information you need to talk to your doctor.  Click this link:
https://www.facebook.com/1987511621569943/videos/2041990019455436/

Also, be very careful HOW you remove an embedded tick.  Many physicians (ER, GPs) don't know how to properly remove it without squeezing its stomach, which will cause its stomach contents to enter your body!  Here is a video to show you a method you can use to ensure that this does not happen.  It is called the Straw and Knot Method, developed by a Canadian doctor, Ernie Murakami.  Advance to 2:06 in the video.  Basically, you position a straw over the embedded tick.  Tie a thread onto a straw like you were starting to tie a shoelace.  Slide the knotted thread down the straw, over the tick's body, as close to your skin as you can get.  Slowly tighten the knot around the tick's head.  This way, you are not squeezing the stomach.  Use gentle tension to pull the tick out.  You can also use fine-tipped tweezers to pull a tick out, but be careful to grasp ONLY the head and not the body/stomach of the tick.

Put the tick in a plastic bag or small jar and have your doctor send it away for testing.  Do NOT allow your doctor to tell you to "wait and see" if you get a rash or other symptoms!  It is best to treat prophylactically (preventatively).  Three weeks of antibiotics now could save you a lifetime of chronic illness if the tick was carrying Lyme.

Spring, a season of new life and new hope

Dear friends,

We seem to have finally entered spring here in Canada.  The sights, sounds, and smells of spring are so refreshing, aren't they?  Spring is that relief after enduring months of harsh conditions.  Don't get me wrong; I love aspects of winter, too, but after five months of cold, wind, ice, slush, and shovelling, spring allows us to just exhale and take in the emerging beauty around us.  It is splendid!

I hope and pray that you are on the path to wellness and that, like spring, you are able to look forward to a new season of hope in your life.  Healing from Lyme is truly like the winter of life; it is hard and harsh.  But as you begin to see some small improvements, you regain that hope of better health.  Those small improvements are like the spring of your life, renewing your spirit as you anticipate better things to come.  Press on, and do not give up!  Very little has been gained in life without perseverance.  That is my prayer for you - perseverance and hope.

Thank you to those who have read this blog over the years, and I truly hope it has been helpful to many who have stumbled upon it.  This is my farewell post, as I will no longer be publishing here on The Lyme Maze.  Six years has been long enough, and I really have nothing more to add.  However, I will leave the blog up for those who may wish to have access to the information.

I wish you all the best on your journey to health!  Never give up!

With love,

The Lyme Maze

Overcoming Insomnia

Insomnia has to be one of the most brutal symptoms of Lyme disease, and so many of us suffer from it.  Prior to 2011, when my Lyme disease appeared, I never EVER had a problem sleeping.  But it has been a struggle for 6 long years now.

Some Lyme sufferers can't sleep, while others sleep too much!  How bizarre is that?  All I can say to that is that Lyme messes with our brain chemistry - hormones, neurotransmitters, cortisol, etc. - and creates a problematic situation that is not easily resolved.  In addition, we might end up with thyroid or mitochondrial issues that can worsen our fatigue.

I encourage you to work with your doctor, naturopath, and LLMD to do whatever it takes to get you sleeping.  Sleep is crucial to healing.  I have had some success with the use of melatonin, 5-HTP, and zopiclone, but there are many more options out there.  Gabapentin was disastrous for me and it took me a very long time to wean off of it due to severe withdrawal symptoms.  Every person is an individual and what works for one may not work for another.  Experiment with various supplements, and if necessary, prescription medication.  But I highly recommend that you do this under the guidance of an experienced medical professional who can help you with dosing and drug interactions.

Here are a few resources to help you in your quest for a decent night's sleep:

1. ProHealth, "Five Supplements I Use to Cope With Insomnia"

2. Connie Strasheim, Beyond a Glass of Milk and a Hot Bath  (Kindle edition)

3. Dr. Marty Ross, Sleep in Lyme Disease  (Dr. Marty Ross' articles require a subscription to his online Lyme book, but it is well worth the money!  He provides an enormous amount of invaluable information on his website.)