Medical abuse in Manitoba – a plea for sanity in a messed up system

This is a copy of a letter I was asked by Marie Hughes to write on her behalf.  It was sent to every sitting member of the Manitoba legislature.

I have Marie’s permission to publish it here.

 

Manitoba Health                                                                                                                  July 22, 2013

Insured Benefits Branch

975 Henderson HWY

Winnipeg, MB R2K 4L7 

Att: xxxxxxxx

 

Re: Marie Hughes

       Manitoba Health Registration No. xxxxxxx

       PHIN xxxxxxxxx

 

Dear Ms xxxxxx,

 

This is further to your letter dated July 4th, 2013, to Dr. xxxxxxx.

 

Marie Hughes has asked that I intervene on her behalf and that it will form part of her file. 

 

I have known Marie for about a decade now and I must say this is the most appalling example of health care delivery that I have seen. (I have a copy of her medical file going back to pre 1990, it is a thick file being updated regularly)

 

To begin with, Dr. xxxxx’s letter requesting an out of province referral states simply and without explanation that Marie “has seen numerous specialists in Winnipeg and has not been satisfied with the outcomes of these referrals”.  This missive of understatement implies it is dissatisfaction with referrals only as to why Marie is looking for out of province care.  That is not the case.  The letter does not go into Marie’s extensive 23 year history on the issue of Lyme disease and her inability to get an opinion outside of that imposed by the Infectious Disease community, so how possibly did you make a decision?  Twenty-three years ago it was decided by Infectious Disease doctors that Marie did not have Lyme disease despite her two positive Manitoba health Lyme tests and all the symptoms consistent with Lyme disease then and chronic Lyme disease now. Were there documents provided to you that Marie did not get to see? 

 

Marie was the unfortunate recipient of a tick attachment in 1990, followed by a rash, followed by flu-like symptoms, followed by two positive Lyme disease titres, one from Manitoba’s Trainor lab, and one from Cadham lab, followed by a short course of antibiotics, followed years of a downturn in her health.  Shortly after her positive titres she was sent to see Infectious Disease doctors who promptly reported she most likely did not have Lyme disease because there was no epidemiological evidence of Lyme disease in Manitoba at the time, yet in the previous 2 year period prior to 1990 there were over 50 cases of physician confirmed erythema migrans rash followed by positive Lyme disease serology.  A physician confirmed erythema migrans was and is confirmatory for Lyme disease because no other condition is known to cause that rash. That ample epidemiological evidence was simply ignored.

 

Since her tick attachment she has had many surgeries and continues to struggle with symptoms that are very consistent with late Lyme disease.  As a result Marie has seen just about every type of medical specialist there is but not one has taken the Lyme disease issue seriously because the official opinion that prevailed was that of Infectious Disease that she does not have Lyme disease.  She has been passed from doctor to doctor in an extremely expensive revolving door model of health care. Had proper investigation been provided at the time of the many surgeries, any tissue and fluids would have been recovered and studied via; histopathology using advanced microscopy, serology, and PCR aggressively looking for why Marie’s medical file is so replete with evidence of severe illness.  Instead the ‘don’t look – won’t find’ process prevailed.

 

Please tell us how Marie can access a proper evaluation for Lyme disease in Manitoba that is based upon Level 1 science, not the current Level 3 evidence used by the Infectious Disease community in Manitoba to deny the existence of chronic active Lyme disease.  This Level 3 evidence is driving health care delivery despite of the abundance of animal model studies showing that active infection, post short-term antibiotics is a very real entity, and despite the volumes of research on Lyme disease’s cousin, syphilis, which has been known for decades to have a chronic active treatable disease component in humans when not treated appropriately.  The logical conclusion to all of this is not to run toward denial, unless there is an agenda to do so which there clearly is here.

 

In 2010, Marie O’Neill, Associate Deputy Minister of Manitoba Health, Ms O’Neill advised Marie Hughes she would get an appointment with a Dr. R who was alleged to have expertise in Lyme borreliosis.  In fact Dr. R was put forward, as the one who was going to head a Lyme disease clinic, during a meeting I attended in Winnipeg in 2009 with provincial Ministerial representatives. I wish to inform you that it was also Dr. R who was forced to print a public retraction in the Winnipeg Free Press in 2011 because of false comments he made in an article about a particular US lab, who has had much success in helping Canadians get their life back as a result of that lab’s Lyme disease test which incorporates more than one strain of one species of the Borrelia bacteria, unlike Manitoba’s test.  As it turns out, the only connection to Lyme disease that Dr. R had, according to his letter to us was that he was an acquaintance of Dr. Allen Steere, a primary author of the current Lyme disease guidelines that fail to recognize chronic active Lyme infection post short term antibiotics, and that fail to recognize anything other than testing, now admittedly poor testing as per Health Canada, used in Manitoba.  With all due respect, Dr. R’s expertise is in HIV, not Lyme disease, and he has many awards as regards to HIV… nothing to do with Lyme disease. 

 

Dr. xxxx, one of the infectious disease physicians who discounted Lyme disease in Marie in 1990 after her two positive tests, was sought out by Marie in 2011 in an attempt to get an out of province referral.  His solution was to suggest to Marie that she see his friend Dr. R. Dr. xxxx never did follow up with an out of province referral. Dr. xxxx was of course in a direct conflict of interest, as any out of province referral may have revealed his own mistake made over 20 years before.`       

 

A request was sent by a family physician to Dr. R asking him to see Marie Hughes.  Time went on, well over a year, and nothing was heard until Marie Hughes inquired and was only then told that Dr. R would not see her.  Her family physician failed to tell her months before that she was denied an appointment. Is this how health care is delivered in Manitoba, by denial of access to those the province holds out as the only experts able to diagnose and treat a particular condition, but whose own specialty denies the existence of the condition you want a second opinion on? 

 

What expert physician in Manitoba can Marie see?  There is not one that we are aware of, and Marie’s two decade struggle with revolving door visits to your ‘specialists’ has resulted in no one looking for Lyme disease using proper methodology and current advanced technology.  She now has many various diagnoses consistent with late stage Lyme disease including anklyosing spondilitis, osteoarthritis, peripheral neuropathy, dementia, organ cysts, connective tissue disorders, sleep disorder, eyesight disorder’s, respiratory disease, enlarged heart, liver disorder, cellulitis, and on and on. It is amazing how many times we hear the phrase, “there is no evidence to support that chronic Lyme disease exists” while the alleged experts fail to do their due diligence and take every opportunity to look for evidence when given ample opportunities.  Manitoba has had years of opportunity to explore Marie’s tissues but instead has done nothing.  Since when has a lack of evidence become a defence while intentionally failing to look for evidence?

 

Marie Hughes most plausibly from all the evidence has chronic active Lyme disease and it is the cause of many of her problems, yet Manitoba appears incapable of and uninterested in investigating, but instead will offer Marie as many expensive medications to mask symptoms, and pay for her many surgeries as ordered, while not even using the opportunity of those surgeries to investigate her tissues.  Marie has always been told that her background with figure skating explains all her joint and connective tissue problems. Marie is in regular communication with many of her peers from her years in figure skating life and those peers are not experiencing what she is experiencing at all so again, this was baseless evidence directing her care.

 

Meanwhile, her physicians have been quite willing to offer diagnoses outside of their field of legal competency such as “neurotic” and “psychotic” to attempt to explain Marie’s unwillingness to be bullied by ignorance and arrogance. These diagnoses belong in the field of psychiatry and psychology, not general practitioner.  Marie’s own psychologist will testify that she most certainly is neither neurotic nor psychotic.  I applaud Marie’s intellectual resilience after so many years of neglect.

 

Marie was slated to have hip surgery and knee surgery, but, yet another catch, two years ago the rheumatologist recommended the surgery be delayed due to blood irregularities. A haematologist visit ensued, nothing done and now two years later, another haematologist appointment and still no surgeries on the horizon.  Marie is now confined to wheel chair.  Marie, at her age and state of health does not have a lot of two year periods left, yet she could have an extended life with a much better quality of life if properly evaluated and treated.  Her age is not lost on those of us who look at these constant delays and denials of care, and now this out of province denial.  Is it that the province of Manitoba does not want to find out that Marie Hughes has been suffering from a treatable illness all these years that may have prevented surgeries and most of her disability?  Is she old enough now to simply discard after Manitoba’s 20 plus years of medical abuse? Force her to go through an appeal process to delay again?

 

Your prerequisite of Marie requiring a ‘specialist’ to state there is no Lyme disease expertise available to deal with her complex situation in Manitoba demands that the Manitoba medical system admit their two decade failure, and that is not about to happen, putting Marie in a position of direct discrimination.  She has been blocked from her right to a completely independent medical opinion and blocked from medical expertise that is currently denied in Manitoba at all cost.

 

It was my recommendation to Marie that she immediately seek legal help, and bring this case forward as loudly public as she can.  This is a disgrace, and resembles very much the syphilis Tuskegee affair, only on a much larger scale throughout Manitoba, as Marie is not alone by any stretch in your Province. We know of many. Countless tax dollars are wasted and lives lost, families destroyed, while dancing around the proper and ethical approach to a ‘known’ chronic disabling disease.

 

When our Board member Dr. Redwan Moqbel, Head of Immunology, Faculty of Medicine, University of Manitoba orchestrated and co-chaired the Lyme disease symposium held at the Faculty of Medicine at the U of M in March of 2012, he fought hard and encountered much resistance from the medical leadership to bring in an excellent ‘balance’ of top scientists in North America, not just those anointed by those who have held domain over this disease in Canada for years.  He succeeded. Manitoban doctors of Infectious Disease, the exact field of expertise charged with being responsible for Lyme disease care in Manitoba, were noticeably silent at the symposium except for Dr. R who did not speak with any level of knowledge on the subject.  Since the symposium, at which peer-reviewed, evidence based science was put forward by experts from universities across the USA and Canada showing that denying chronic active Lyme is premature at best, the situation for doctors and patients has worsened in Manitoba as there seems to have been a tightening of the grip by Infectious Disease ‘specialists’ to enforce their dogma regardless of harm done to people… or perhaps a fear of themselves being exposed considering the preponderance of evidence.

 

So, just who will come forward for Marie Hughes under your current system and how does she get an unbiased professional second opinion without leaving the province before she dies?

 

Is there no room in the guidelines or legislation governing out of province access to care, for special circumstances? If medical dogma, not the diversity of science and the exploration of cause, directs health care in Manitoba and only those whose out of province care will not question the official policed dogma get the green light or stamp of approval then taxpayers are not getting value for the dollar spent and lives are at stake.

 

On what basis was the request denied considering the embarrassing lack of information provided by Dr. xxxxx?

 

CanLyme can provide medical experts from four continents to speak to this issue. 

 

Jim M. Wilson,

President 

Canadian Lyme Disease Foundation

cc: Premier, Greg Selinger; Minister of Health, Hon. Theresa Oswald; Minister of Justice and Attorney General, Andrew Swan; Leader of the Opposition, Brian Pallister.

Bcc: News media and others as per Marie Hughes.

 

10 Comments

  • H says:

    I have experienced much of the same here in Manitoba. Diagnosis only received after referrng myself out of province, and no local doctors acknowledging that I am ill or providing adequete treatment. Letters sent to specialists by a former family doctor hinted I was mentally ill. Sick now since 2002. Our medical system is a system of privledge and secrecy, in operation to benefit only itself. I have no hope.

  • Diane says:

    Good for you Jim on a well written letter. My heart goes out to Marie, you are such a courageous woman.

  • chris powell says:

    Excellent letter! I will be following the response with great interest. Marie has obviously been tossed around the medical system and denied so many opportunities to actually find out the true cause of her maladies. Such a shame, not only for Marie, but for all Canadians. If this can happen to this patient just imagine how many other times this is occurring all across Canada.
    When will the madness, denial and pompous attitudes stop?
    Keep fighting Marie.

  • J. says:

    Marie’s story is probably identical to many. I too had a strange growth and have serious and deadly chronic illnesses. Also tested positive for Lyme many times but one negative ruled all of them out. I asked if the issue from the growth could be examined regarding Lyme.

    This request was written on the pathologist’s report by the doctor I was seeing. They aren’t interested in medical research in Canada. They did not test the tissue. No matter how many positive tests Lyme patients get, it seems their only goal is to rule all of them all out by every means imaginable.

    I suspect that Canada may have far more than 10 times the number of Lyme cases they admit (maybe 20 times) because of their ultra extreme denial, which is so strong that the only way 99% of the patients will find out the truth is to spend a few thousand dollars getting diagnosed positive repeatedly in other places, and I mean POSITIVE repeatedly! You see, according to Canadian math, a few positives and a negative equal negative.

    They don’t count on most patients doing getting expert testing elsewhere, and hope the high costs they will have to pay will discourage them from getting testing to prove they were indeed positive the entire time.

    Positive tests outside of Canada will then be discarded, even if taken at the most recognized and highly accepted clinics in the world. ‘Doctors simply don’t want them because once they are aware of the results they are trapped between their hippocratic oath and CDC guidelines, and it’s impossible to be on both sides. You pick one or the other.

    There is then no place at all for the patients to send all of these positive Lyme tests, which is the best way ever to rule out Lyme disease in Canadians. If you don’t accept the paper, they don’t have the Lyme. Simple isn’t it.

  • Barbara Agar says:

    Well said. I am new to this Lyme dilemma since I have only been diagnosed in the last 3 months but have been ill for 25 years. I am continually amazed at the stories I hear and the struggles people have endured. I am glad to know that CanLyme is there for people like Marie and that you especially were able to speak on her behalf. I know from experience how difficult it is to fight and to stand up for ourselves when we are in such a weakened state so it’s good to know that when we are no longer able, we can support each other.

  • Tammy Lacombe says:

    I have dealt with these same issues in Alberta since falling ill after a tick bite in Manitoba in 2005. Tested negative in Alberta less than a month after being bitten by a tick. Symptoms got progressively worse, dozens of symptoms, dozens of Dr and Specialist appts with no diagnosis but a firm NO you don’t have lyme, you tested negative, we don’t have that in Alberta, and never heard of it in Manitoba! But we don’t know what is causing your symptoms! A Neurologist told me last year that if I had lyme I would have rashes all over my legs and I would be dead by now and then laughed! I was also told by a panel of specialists that I should try get behavioral therapy to deal with all my problems! After much desperation as I knew my symptoms were very real and not right, I was diagnosed in 2010 out of Canada with a possitive test for Lymes! Wow finally a diagnoses for my many problems, not ever imagining that my problems had just begun…….. my Dr treated me with 3 months of antibiotics and my symptoms lessened I was on the road to recovery… I thought. When treatment stopped everything came back 10 fold! When I went back to my Dr. he denied I ever had it and refused further treatment! I was also refused another test in Alberta since my first was neg. Did he get in trouble for treating me? I think so! It was crazy and heart breaking I was in total shock!! My health has declined so bad since. Skin, organs, joints, muscles, eyes, ears, respiratory, crazy severe headaches, fatigue and memory loss! Hundreds of tests, dr appts , 2 surgeries, NO tissue sampling, numerous specialists! I had to start right back at the beginning again but so much worse! Really, when will this end, the denial, lack of answers, shuffling patients all over chasing symptoms and not dealing with the real issue! The price is so severe to the patient, the government and the healthcare system! It’s discusting!!! Imagine if all doctors had the proper knowledge and belief that Lymes is real and I had been treated with antibiotics back in August 2005! Soooo Sick and Tired of this!

  • Nancy Millar says:

    There are none so blind as those who will not see. Referring to the medical people. In the 150 years since Louis Pasteur discovered bacteria, these people have still not figured out that chronic diseases (if not genetic), are caused by infections, either bacterial, viral, or fungal. It’s not rocket science! What else could it possibly be??? Plain, ordinary, logic would take them a long way, but that seems to be too much to ask. Use your brains, people! This is so obvious, I cannot fathom not getting it. Really, it is very simple.

    Also, the medical people should start looking through their microscopes at live tissue, not dead tissue. If they looked at live tissue, they would see that bacteria, for example, changes form, for example, from spirochete to granules to biofilms, which are by definition, chronic. (Dr Alan MacDonald) They say there is no chronic form of diseases like Lyme because they lack, or ignore, this basic knowledge. This situation is completely appalling. I think of it as a crime against humanity.

  • marshall desveaux says:

    I’ve gone through the same bullshit myself. I no longer have any respect left for the doctors or the medical system. The medical system is a joke and we are being ripped off by these high paid arrogant doctors. It is disqusting.

  • Cinder Ella says:

    I have seen 3 doctors in just under one month – 2 ER docs, (one in Ontario and the 2nd in Manitoba), and today another neurologist. These are only 3 docs in a long list of specialists, ER MDs, and walk-in clinic MDs that I have seen over the past 8 years. My initial 2 tier tests, (useless as we now know), came back “indeterminate” for lyme back in 2005, although I literally had each and every symptom associated with the early stages of this disease. The IDS to whom I was referred insisted that I was experiencing somatic manifestations associated with depression, even though I was insistent that I was NOT depressed. I actually received 2 weeks of doxy about 3 months after the start of symptoms, although the IDS’s recommendation was that I be referred for psychiatric assessment. At any rate, the damage was already done – the antibiotic treatment that he did prescribe for “possible lyme disease” was quite simply too little, too late, and I became sick, about every 4 weeks, for the next 6 years.

    In May of 2011, I had an acute recurrence of all of my initial symptoms, plus more, but many times worse. I didn’t even know that lyme could “hibernate” for months, years, or decades before being triggered into reactivation. I knew, however, that I would NOT seek help again in Manitoba, given the condescending brush-off I had received in 2005.

    I called doctors’ offices and clinics from one coast of Canada to the other, looking for a lyme literate medical doctor, only to be told each and every time that if I wanted treatment, I would have to go to the United States. Each and every call. Some of the doctors had lost their license, some had moved their practice to the U.S., one only treated patients from Nova Scotia.

    Miraculously, I found a FNP in Wisconsin, recommended to me by Mr. Thomas Grier, a well-known lyme researcher from Minnesota. Finally, I had a medical person who was lyme-literate, ILADS-trained, and who was also willing to listen and offer positive feedback. Since September 2011, I have been treated with both oral and intravenous antibiotics, for lyme, babesiosis, bartenellosis, and mycoplasma. My FNP tells me that I am very ill, and encourages me to continue to fight, to have hope, and to have faith that she will not stop trying treatments until I am better. She is truly a Gift sent to me by God; it’s the only explanation I can give.

    So, yes, the attitude of all 3 of the MDs I have seen in the last month? Although I had gone to see all three for different issues unrelated to lyme or any of the co-infections that I have, as soon as they read in my chart that I was being treated for lyme, that was all they focused on. All 3 of these medical doctors became judgemental and argumentative, insisting that I could NOT have lyme, referring to me as being unstable, referring to organizations like ILADS as fanatical or crazy. I felt mentally and emotionally abused. With each and every specialist, every MD that I have seen in the last 8 years, I have always held the hope that “this” doctor would be “the one” – the Manitoban doctor who would finally tell me that they believed me, that lyme disease is REAL, and that they would HELP me to get better.

    It was after seeing the specialist today, yet another Manitoba doctor who chastised me and argued with me, as I sat in the parking lot, sobbing and confused, that it FINALLY registered – I have been chasing windmills. There is NO medical doctor in Manitoba who will say, “I understand – what you have IS REAL, and I will HELP you to regain your health”. NONE.

    Marie Hughes is a lovely and caring lady. I can’t imagine how she has remained so strong and so determined for over two decades. Marie, you are are an inspiration to all of us. I weep for your experiences, I stew in anger for the years of medical resistance and abuse that you have endured. I thank you for your continued effort to bring our government and our medical system out of denial and into reality. You deserve so much more. I must say though, Marie Hughes, You Rock. God Bless.

  • Wayne Laurie says:

    I have met Marie on several occasions, and even though she is confined to a wheelchair, she still comes out and helps as much as she can at Lyme Rallies or Conferences. She is a dear lady and being in a similar situation with Chronic Lyme myself, I only hope I can persevere as long as she has, even though she’s been swept under the rug so many times??? It is sick how Manitoba Health dealt/abused Lyme victims. Their usual answer is that “It’s all in your head!”, or “You may want to seek psychiatric help???” I wouldn’t wish this disease on anybody, except for the Health officials who made a mockery of me with their inadequate testing and MD education about Lyme Disease. I have had 9 years of my life (Golden Years?? HA!!) taken from me, and if not for a very patient, caring wife and daughter, I would have given up long ago. I am now 60 years old and hope to regain enough life/energy to see and play with my Grandchildren when they come along!!! If I seem bitter, it’s just because I am!!! Prisoners and dogs get much better Lyme treatment than I did !!! Wayne