Canadian Lyme Disease Foundation withdraws endorsement of the Complex Chronic Disease Program at the BC Women’s Hospital.

6 Comments

1. This is incredibly disappointing news. I too am struggling with chronic Lyme disease and debilitating neurological symptoms. I was hopeful that the BC Women’s hospital program would drive research and the progression of treatment options and standards. I feel like I have fallen down a rabbit hole into a reality that the medical system refuses to acknowledge. How sad for so many who are suffering.

2. I am so sorry it has come to this. We here in the US had high hopes for change over the border. I pray that things change soon for you and for us.

3. Sure am glad that Canlyme nipped this one in the bud before too many people were impacted.
   Hopefully, other people with Lyme who are signed up for this hospital, read this and withdraw from going. We are trying to get better not worse.
   Thanks for looking out for us!!

4. It is cruel and unusual punishment for Lyme sufferers to have hopes raised and then dashed again. I was so encouraged by the establishment of the B.C. Chronic Disease Clinic, especially because the Canadian Lyme Disease Foundation had endorsed it. While I had misgivings after watching the “think tank” session for it’s physicians ( some of the info. seemed like Lyme 101 that for a group of so-called specialists should have been elementary), I was hopeful that a new perspective and practice would emerge. It is with great disappointment that I learn of the insistence on adherence to useless and misinformed guidelines. We must be relentless in putting science in front of the medical profession and in demanding better from Canadian health services. Thank you Canlyme and Jim Wilson for helping to do that! We can be encouraged though by the devotion to this uphill battle of such scientists as the Sperlings and others. Good work is being done!

5. Thanks for the info . I’ve had Lyme disease for over 16 years now and only began treatment in the States
   three years ago . I waited a long time for this clinic and had big hopes on it . I can not believe this ……..
   Why won’t anyone help us ? Bill Dixon

6. I am 64 yeas old and have 20+ symptoms of Lyme Disease develop in my body over the last 17 years.
   I live in the interior of B.C. and was a Logging Contractor for 45 years.

   1)-)1995 – very sick, no energy, intense back pain that lasted for one week . I had three sessions
   over a period of 3 months.
   2) 1995 Developed a rash on my lower back and sides. Still their too date. Treated with some cream
   that never worked.. I do not ever recall a bulls eye rash.
   3) 1996((approx.)started expearencing dizzy spells, and loss of equilibrium. comes and goes to date..
   4) 1996 – 2003 Started to experience joint pain and numbness and tingling in the hands and feet.
   These symptoms have intensified to date that I have a hard time moving around.
   5) 2004 to date I can fluctuate in weight by a 100 lbs . Three times in the past 10 years.
   I have an eating disorder caused by as serious case of restless leg syndrome. Because I can not
   get a good nights sleep I tend to walk around at night and over eat to pass the time. Before
   2000 a drug called Mirapex kept this disorder at bay . Now the Mirapex is not nearly as effective as
   it once was. Why the change. I have taken Mirapex since 1989.
   6) 2007 Overnight I lost most of the vision in my left eye. Went to an eye Specialist and was diagnosed
   with M.S. I was then sent for an M.R.I. and referred to a neurologist. The M.R.I. showed 4-small lesions
   on the brain that were diagnosed as insignificant. He did some strength tests on me and said that
   I did not have MS. He said that this just happens to some people and no other explanation to the
   cause of the loss of the sight in the left eye was never given . To date this condition has deteriorated
   even more.
   7) 2008 I started having bouts of anxiety in the early evenings and through the night . I tend to eat to
   ward of the uneasy feelings. These feelings come and go.
   8)2008)I started to loose Bladder control. Checked over by an Urologist All functions appear to be in
   good working order. No change to date. The Urologist suspects that nerve damage could be the
   cause. This condition has worsened to a critical state. I use 6-7 depends a day . Going out to
   public places and functions are avoided for obvious reasons.
   9)2008 to date My balance has become so bad that I can only walk jn short steps or I tend to fall
   over.r
   10) Over the past 10 years I have experienced approx. 10 bouts of tightening of the chest and
   and severe chest pain. A cardiologist did a lot of checks on me and all was ok. My cholestoral
   and blood sugar levels are normal.
   11) 2012 The left side of my face went numb and tingly. My hands and feet started to tingle even
   more than before. It is now very painful to walk because of the intense pain in my hips
   lower legs and feet .My toe nails have become deformed and grow away from the nail beds.
   The bottom of my feet are dry and cracked. My hands have lost a lot of pinch strength and co-
   ordination. I have severe tissue wasting in my hands
   12) 2013 My doctor referred me to a muscle rehabilitation doctor. Her diagnosed me as having
   Carpel Tunnel in both hands and has set me up for corrective surgery in about a month. The M.R.I.
   results were sent to a Neurologist who said that I have another 3 Lesions on the brain that were
   inconclusive and the 4 that were Noted on the M.R..I. of 2007 were unchanged. He did some
   physical tests on my muscles and said that all was normal and as the Neurologist of 2007
   told me I do not have M.S. He told me that I could have Lyme Disease as all my symptoms
   point in that direction.

   HE WAS THE FIRST DOCTOR TO MENTION THE WORDS LYME DISEASE AS A PROBABLE CAUSE
   OF MY LONG LIST OF DISORDERS. HE ORDERED BLOOD TESTS AT A LOCAL LAB. I STARTED DIGGING
   INTO A LOT OF INFO ON LYME DISEASE. NOW I UNDERSTAND WHY IT WEAS NEVER DISCUSSED
   AS A POSSIBLE CAUSE OF MY DETERIORATING HDEALH OVER THE PAST 18 YEARS. MY BLOOD TESTS CAME BACK NEGATIVE.

   After a lot of research on Lyme disease on the internet ,talking to people I know who have
   been positively tested for it, and trying to have my deteriorating health symptoms diagnosed.
   Can Lyme disease be what I have. Why is it kept such a secret by the medical community.

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