Category Archives: Lyme Disease

information regarding lyme disease experiences, diagnosis, treatment

The Untouchables

Posted on by

I can’t say that I am surprised, Lyme disease is once again being ignored and swept under the rug by the “powers that be”. But this time there should be jail time. I’ve had enough!

During an antitrust investigation of the IDSA guidelines development process for the 2006 Lyme disease treatment guidelines, AG Blumenthal’s office uncovered significant procedural deficiencies, including conflicts of interests of the panel members. A settlement was reached, and the IDSA is breaching it. The IDSA is manipulating the voting process to favor no change in the guidelines. The AG has sent the IDSA a letter requesting that they redo the vote in compliance with the agreement. [From lymepolicywonk.org]

I am very very angry. The Infectious Diseases Society of America – or at least the leaders – consider themselves to be untouchable. Like gangsters from a previous era. Or brazen criminals who have no thought or care for anyone outside of their own self-interest. To the general public, this may sound like an over-the-top emotional response. But how would you feel if the medical body with the greatest influence on cancer diagnosis, treatment and care decided to unilaterally ignore all relevant research and then proceeded to deny that cancer is really that serious, block treatment, obstruct the advancement of cancer research, and flout the law in every which way to maintain their self-serving status quo. So yes, I am very emotional. I have been ignored, sidelined, neglected, even abused by a medical system which rewards strict compliance to a worn-out code and punishes anyone who tries to help a patient outside of those tight boundaries.

So why am I so concerned, since I live in Canada? Shouldn’t I be minding my own business?

The IDSA essentially directs all lyme disease policies adopted in Canada. Everything that happens here regarding lyme disease recognition, diagnosis and treatment is in lockstep with the official IDSA policies to the south. My own lack of care and bedridden state are a direct consequence of the Canadian adoption of IDSA guidelines and policies.

See the link associated with the quote at the beginning of this post for further information, as reported by the California Lyme Disease Association. I hope that the gross injustice and utter contempt of the IDSA in reviewing their lyme treatment guidelines gets each of you worked up as well. If you live in the U.S., please let your elected leaders know what you think.

Mid-winter news (and the mice…)

Posted on by

erinspet.jpg As you can probably guess, we no longer have our cat. She passed away on November 1st after 20 years with us. She was a great mouser. Two mice wouldn’t have survived in our yard, let alone trapped in a cage in our house. Within a month of losing the cat, Erin got it in her head that she wanted two mice (after she suggested another cat, then a dog). Erin had some conditions to fulfill first, before 2 “rodents” would be coming into our house. She had to ensure that a friend would be able to look after them when she was away for part of the summer. And she had to research costs, accessories, etc… To Erin’s credit, she quickly became an expert in mice, cages, bedding, food, and goodness knows what else. She had even named them. There was going to be a white mouse named “Scarlet” and a black mouse named “Linda”. As you can guess, Erin doesn’t believe in leaving things to fate.

On January 23rd, the time had finally come for the mice adoption. The preceding three weeks had consisted of screams and giggles of delight as the critters were anticipated. Having mice around didn’t stop that either. At least initially. I have to laugh now when they pee all over Erin and run around the house in plastic balls. Of course, from my room upstairs, I am one floor above most of the action. But they have visited me, and I hear stories. It is interesting to note that, as I predicted, Erin’s enthusiasm has tempered and matured now that she has had to do the weekly cage cleaning :-). She still loves them though…

Catherine has recently turned 17. Almost an adult! She has an exciting week underway. Catherine is part of a choreographic workshop at her high school. After months of preparation, this week has 7 evening shows. Seven!! She is pretty pumped, especially since she is almost recovered from a long illness (see below) that kept her away from school for five days. It’s pretty amazing what kinds of opportunities are available at school to do really big things outside of the classroom, especially in the arts. Catherine certainly puts a lot of time and energy into band, dance and choreography at school.

Kristine has been really really ill. The kind that comes every couple of years or more. In fact, all of us have had the joy. Erin fought it off again and again over a couple of weeks. I didn’t do too badly. It keeps hitting me, but is almost finished. Catherine missed a fair bit of school. Kristine has so far missed 7 days of work. She tried to go in this Wednesday, but had to come home half way through the day. Catherine’s school seems to have a lot of students with it, but no one that we know of at Erin’s school or at the hospital where Kristine works. Hopefully Catherine will make it through her busy week intact, and Kristine will be strong enough to return to work by Monday.

I have been following the blog of a young woman from British Columbia who has profound neurological lyme disease. She was one of the main lyme sufferers portrayed on the Nov. 14, 2009 CTV W5 show. Nicole’s blog provides a glimpse into the joys and sorrows in the life of a bright, creative Canadian who suffers incredibly from lyme disease and yet is so courageous and inspirational. The stories of her travails with the medical system are sad, tragic and humorous all at the same time. Along with my own experiences, her stories intersect in what I call the lyme disease leper colony, the lyme disease hot potato or the lyme disease “no man’s land”. Basically, doctors that are willing to wholly commit to a lyme patient and endure endless persecution in the process are extremely rare. Do you really think I love to lie in bed, without a lyme literate medical doctor by my side? Enough on that. Give Nicole’s blog a read if you get the chance. It is raw, challenging, inspiring, disheartening, and ultimately a peek inside the soul of a great woman who never gives up.

Looking both ways

Posted on by

This past week I have been reflecting back on the last decade. Lots of highs, especially in the early years. And lots of very trying times since 2004. Looking back in time gives rise to mixed feelings. Good memories. Regrets. Joys. Sorrows. And a rude introduction to lyme disease and the profound ways that lives can be changed in the blink of an eye.

The past decade

Family Photo 00

The year was 2000. I was a Vice-Principal at Woburn Collegiate Institute in the Toronto District School Board. By 2001 I was at Cedarbrae C.I. when, on September 11, 2001, the unthinkable happened. The next morning I led a spontaneous memorial with many students and staff around the flagpole. The Vice-Principal role brought lots of interactions with students (often relating to attendance or discipline issues). Also lots of time and effort organizing and implementing exam schedules, school timetabling, staffing, teacher evaluations, curriculum reviews, school planning, etc… These were very challenging years, but necessary and formative. Lots of good memories.

Kristine and I were busy with two young daughters. Frenetic doesn’t begin to describe our lives at that point! I well remember when Erin first went to school. She was so terrified that she wouldn’t let go of the flagpole and go inside. Now she is 13 and doesn’t tend to cling as much anymore. In fact she loves school (I can almost hear a ‘groan’ in the background). Catherine loved primary school and thrived on reading and other creative endeavours. Some of their early work at school, etc… is still posted on our old family web site. The girls have certainly grown up, and have even adapted as my health and other family circumstances have changed. We are so proud of both of our girls.

The summer of 2003 was a time to remember. I had just been promoted to Principal and was beginning in a new school. Normally, the summer would be consumed with preparations for this monumental responsibility. Kristine, Catherine, Erin and I had made plans to travel around the Maritime provinces, camping in a variety of settings. What a trip!! PEI, New Brunswick, Nova Scotia (especially Cape Breton Island), and Newfoundland were fabulous. Whale watching, boat trips, icebergs, dunes, gorgeous scenery, hiking, …. Lots of memories.

2004 was to be a year that changed our lives completely. Northwestern and Northern Ontario had always held a special allure. A three week trip was to consist primarily of camping, along with a brief hotel stay, and staying at a Bed and Breakfast run by a Cree couple in Moosonee. Our journey took us to Sudbury, Sault Ste. Marie, Lake Superior Provincial Park, Pukaskwa National Park, Sleeping Giant Provincial Park, Thunder Bay, Cochrane, Moosonee and Moose Factory. Two train trips on the Algoma Canyon tour and the Polar Bear Express to Moosonee were very exciting, especially for the girls. Unfortunately, it was at our first campsite just northwest of Sudbury that I had an encounter with ticks. Ticks infected by borrelia burgdorferi, and a variety of other co-infections. The problem is that ticks are incredibly tiny, and Canadians have been lulled into a false sense of complacency through lack of information about the threat of tick-borne illnesses. So I didn’t know I had been bitten, and carried on as if nothing had happened. But noticeable symptoms started to progress, and I even got a huge, puzzling “bruise” on my left foot. By the end of the trip I was a basket case, with significant fatigue, brain fog, severe headache, joint problems, memory problems, etc… And it would get a lot worse before long.

Doctors couldn’t make any sense of my complicated symptoms. And I saw many of them. I was tested for everything under the sun, including MS and ALS. I had to stop working by the end of October, 2004, just as my second year as Secondary School Principal had begun. I got worse and worse, and saw doctor after doctor. Finally, in the fall of 2005 lyme disease was recognized and treatment began. The lyme was so entrenched that high dose antibiotics took a while to really begin to make a dent. By the summer of 2006, I had improved enough that I was even talking about possibly being able to return to work on a limited basis by 2007. But things took a very bad turn, and I became bedridden. My treatment regimen was changed a few times, but each time, my liver became more and more affected. And since the onset of the infection, I had been experiencing severe food, drug and chemical sensitivities. This had a major impact on my diet, ability to tolerate scents and other chemicals such as ink, detergent, etc… This also made it very difficult to tolerate any pharmaceuticals, and even many supplements (and even Vitamin C). As my doctor used to say, “If side effects are rare, David Leggett will be the one to experience them!”

Throughout all of this, Kristine (with some assistance from the girls) was integral in looking after me. She really did take the “for better or for worse” part seriously! The love and support from Kristine, Catherine and Erin have been so important. Kristine had to continue working, to generate income and also to give her an outlet for professional growth and development. In fact, she was promoted to Nursing Practice Leader soon after I became ill, and has thrived in the role. Catherine has gone through Middle School and is now in a secondary school focussing on the arts. Music has played an important role for both girls. Both play the flute – we keep trying to convince them to perform a flute duet at home or at church.

My own health went into a complete tailspin in the late winter/early spring of 2007. As if being bedbound wasn’t enough, the last try on an antibiotic regimen failed and left my liver and my health in a perilous state. Since that very trying time, we have used alternative therapies to begin to stabilize my health and address the lyme disease and co-infections. Without much medical help, I might add, since the majority of medical doctors do not have the expertise and will to deal with lyme patients.

IMG_1176.JPG

This past year (2009) has been eventful for all of us. Kristine has really grown into her own at the hospital. Erin finished grade 7 and began grade 8. Preparations for applying to high schools began in earnest (with a fair bit of hand-wringing at first). She has really improved on the piano and flute, and is doing well at school. Catherine is in grade 11 and is really enjoying her courses, especially anthropology and sociology, music and dance. Both girls play the flute in their school bands.

I had the opportunity this fall to be interviewed by the CTV W5 current affairs show for a half-hour segment on lyme disease. The hours with the producer and the four hours with Paula Todd on camera took an awful lot out of me. Not to mention the aftermath, as many concerned people contacted me with offers of support, help, advice. Hopefully this show raised the level of awareness of lyme disease in Canada. The picture to the left was taken on Christmas Day, 2009. I can’t participate in the world that everyone else lives in, so everyone comes to me!

The year to come

Goals are a tricky thing for me, since they can usually be accomplished through skill, focus and effort. Hopes and dreams are probably more accurate for me at this point.

My goals involve doing whatever I can to improve my immune system, and to continue addressing the lyme disease and co-infections… Anything else would be gravy 🙂

My hope would be that friends and even family who are uncomfortable with my illness would feel more at ease. And that the nation as a whole would wake up and reach the tipping point, leading to a public and medical discourse that acknowledges tick-borne diseases and their escalation across North America. And…… that I would be able to walk again without fatigue!

Turning the page on lyme disease in Canada

Posted on by

I really meant to post this a week or two ago, but suddenly crashed on December 3rd. Getting back to my “normal” state has taken time, but here I am!

For quite a few years now it has been really bugging me that lyme disease is anything but clear cut, that statistics are vague at best, and that information that could really have an impact on both healthy and lyme-infected Canadians is not readily accepted nor easily available.

Confronting these issues means dealing with a number of questions which address our collective inability to make a sizeable dent on the lyme disease frontier.

How do we take everyone who cares about lyme disease in this country and mobilize them? How do we ensure that politicians listen? How do we convince the majority of doctors that their collective beliefs about lyme disease are largely responsible for keeping the population ignorant of the risks, diagnostic realities and treatment options? What is it that is keeping Canadians from hearing much about lyme disease?

I really should consider writing about something that actually has easy answers 😉

For now, let me share my thoughts about a general strategy for making progress on lyme disease in Canada (the same applies to our neighbours to the south, who are affected in even greater numbers). How can we transform what are often fragmented passions into coherent actions? I have to give credit where credit is due and note that CanLyme, Lyme Action Group, and other individuals and groups from coast to coast have already made considerable efforts toward this end, so my ideas don’t spring from a vacuum. Like everyone else, I just want to see action on lyme disease reach the tipping point. I run the risk of stepping on some toes with this post, but my hope is that those actively involved (and there are many!) in the lyme fight will take my ideas and concerns in the spirit in which they are intended. Everyone has strengths that spring from natural talents, work experience and life experience. I am a keen observer of organizations, systems, strategies, visions, planning, and all that other organizational and big picture stuff. A lot of that stems from my former professional roles. And there isn’t much I can do from bed, so I might as well add my voice and hope that any ideas worth considering help to make a difference.

Here is my “surge” strategy:

  1. We need a very simple, but incredibly thorough census of Canadian lyme disease sufferers and families, friends and supporters. Basically, we need to know everyone who is sick and everyone else who cares. For the sick – very basic information about their infection, diagnosis, treatment, and condition (well-designed – brief, check boxes, single word and very short descriptions… no long explanations – makes my head spin). Many ill people will not even know what is wrong with them, so a limited check-off of key symptoms might be useful as part of the survey. For those who are caring supporters of the cause – do they know anyone with lyme, where did they hear about it, etc… In essence, the survey has to be simple and proactive, leaving no stone left unturned, and must be designed to reach as many Canadians as possible, through key medical doctors, naturopathic doctors, other health professionals, local lyme groups, the national and local media, community organizations, churches, individuals with lyme, etc…. The ultimate need is to make connections, to develop statistically relevant numbers. I envision an online survey rather than an awkward email survey. Both the survey and each of the following points must recognize the role of alternative treatments for lyme and co-infections. Be inclusive. Not everyone can afford or tolerate or has a doctor who will prescribe high-dose, long-term antibiotic therapy. I happen to be one of them.
  2. We need a “lyme action central” web site – similar in many ways to CanLyme, but separate, simpler (easy navigation, layout), focussed on advocacy. This site could include a database, a way to link all national and local lyme groups and what is happening at each local level, etc… I had considered doing this myself, but it is much too large a project given the current state of my health. It would essentially be a simple, well-designed, “easy on the lyme brain” type of sitemap. Essentially a Canadian portal, if you will. A major part of this would be a page allowing a visitor to “sign up” to receive email information in specified categories, such as research, basic information, personal stories, updates to press/doctor/politican/personal kits, events by region, etc… Key components of the home page would be the following links to site pages – see numbers 3 thru 8 following…
  3. We need one centralized, simple-to-navigate database. A comprehensive listing of relevant research links by category and publication date would ensure that one could quickly find current research (perhaps marked to signify which are peer-reviewed) on lyme biofilms, for instance. Also, how to debunk frequent arguments of IDSA ‘junkies’; links to all lyme organizations (categories for Canada, U.S., international); we need stats at our fingertips (also on central database) — some of this will stem from census, some from key research findings. I’m thinking fact sheets, updated monthly.
  4. We need daily or weekly digests of updated research/info/stories/press kit updates/political lobbying kit updates/doctor education kit updates/basic lyme information updates (user would sign up on central web site and select categories of interest – see numbers 5 thru 8 following) — lymies and supporters need to be kept in the loop through organized, focussed updates. Very few with lyme brain fog can navigate all of this information on their own.
  5. We need a media plan & coast-to-coast coverage – nobody cares unless we have stats and relevant research & talking points at our fingertips. Publish “media kits” as integrated pdf – must focus on catchy interest gathering items which would attract readers, listeners and viewers.
  6. We need political lobbying – letters, action kits for use by politicians (must have a local hook to get past handlers and executive assistants)
  7. We need doctor “education” kits – stats, patient surveys, research summaries — keep it brief to hold the attention of busy medical professionals. The doctors need relevant, verifiable evidence to take lyme patients and potential lyme patients seriously.
  8. We need a basic lyme information package (single, multi-page pdf) – basic fact sheets, symptom check-list, where to get help, etc…
  9. We must continue with… the wall of hope, and must not let up trying to pressure those in positions of policy power and/or influence, etc… (don’t stop doing the things that are working)

Yes, this takes resources, time, expertise – all of which are difficult to harness within the lyme community, where individuals already deal with significant personal and health challenges. We also need to ensure that we look beyond the “this is the way we do things” mentality to build bridges and look creatively at how to change, supplement and/or improve what we already do. Feel free to comment. My hope is that some of these ideas might form the basis for a coordinated national thrust, perhaps through the Canadian Lyme Disease Foundation.

Moving forward with lyme

Posted on by

I have been getting a lot of calls, emails, and facebook contacts from across Canada. One from a salesman. Many from fellow lyme-sufferers who were deeply touched by such a high-profile show FINALLY giving some visibility to a disease that has taken its toll on so many Canadians, and yet for many reasons, some obvious and some unfathomable, remains largely invisible. And many from people with ideas to help me.

I know that the show touched a lot of nerves. The Association of Medical Microbiology and Infectious Disease Canada posted a rebuttal to the W5 show, and The Canadian Lyme Disease Foundation posted a very good response to that. Personally, I have a number of friends who are medical doctors. They care very much about all of their patients, including those that they might suspect of having lyme disease. The problem is systemic. Even if a doctor really wants to do everything possible to help a patient who is exhibiting early symptoms of lyme disease, the tests aren’t accurate, an eager medical response often brings an investigation from the provincial college of physicians and surgeons, and the general medical support infrastructure isn’t conducive to an informed and timely response.

Back to me for a moment… I found the following a while ago on one of the lyme support forums that I frequent.

I try to remember, at least once each day, just how ghastly-bad some of the days in the past were for me with this disease, and how happy I would have been on any one of those terrible days if I could just feel as I feel now. it’s all relative. Then I repeat the word, ‘Patience, patience’, take a deep breath, and try to keep moving forward, thinking how much better and therefore, how much happier I must be now, if I can only just remember how far I’ve come. I project this slow recovery pace forward, but also pay my respects to my endurance in the past that got me here. It’s that stubborn endurance that wil get me there, to recovery.

Reactions to W5 Lyme show

Posted on by

Can’t say that it was easy. I’ve never been much of one for television exposure, especially now that I look like a beanstalk! Since I have been bedridden for 3 years now, I haven’t been able to stand in front of a full-length mirror and take it all in. Given how I looked on W5, I can’t say that I have been missing very much 😉

To be honest, I have mixed feelings about the show. I am sure that part of my reaction is coloured by the strong emotions which welled up in me as the full reality of my condition broke through the protective wall that I had gradually built up in order to cope with the disappointments, treatment failures, lack of a supervising lyme-literate doctor, and the slow progress with alternative methods.

Following is a slightly modified version of an email I sent to CTV to provide feedback on the show.

To CTV — Thank you for shedding some light on my case of lyme disease. Multiply my case times 10,000 and one probably gets the number of Canadians infected anew each year. The problem with lyme disease is that once one gets ill, one spends all of the time and energy scrambling to find a doctor, a cause, a positive test, a treatment, a cure, not to mention the need for cash to finance all of these “non-sanctioned” endeavours. Any “extra” time and energy is spent fighting doctors, insurance companies, public health policies, governments. There is nothing left over for mounting a P.R. campaign. The result is that myriads of people with lyme disease are too sick to properly advocate for themselves and publicize the risk far and wide. This coupled with extremely weak public health and medical prevention, recognition and treatment, means that Canadians are ripe for the picking (or biting…).

Having said all of this, CTV W5 has begun with the first step. I urge W5 (and CTV in general) to dig even deeper. There are many tens of thousands of Canadians who are experiencing a wide range of lyme symptoms. Many do not know what is going on, and their doctors are not usually much help. I got a facebook email today from a man who saw the W5 show, and searched for me on facebook. He sent a desperate plea for help. He heard his symptoms described during the show. So far, no one has been able to identify what is wrong with him, nor help him. Although I didn’t mention it during the interviews with Paula Todd, there are others in my extended family who are ill with lyme disease… And many other friends, acquaintances and friends of friends are waging the same war. We don’t show up in the statistics and we feel powerless to advocate for ourselves – every attempt to do so is blocked by political indifference, medical indifference, media confusion about an extremely complex and multi-system illness, etc…

So… digging deeper would mean news shows on specific topics such as

  1. Testing (why have they abandoned our two-tier testing regimen in Europe where lyme is generally dealt with swiftly and competently? what is the true evidence for and against the two-tier system? how would the statistics be affected if we moved to a more enlightened and honest test for lyme disease?)
  2. PHAC (public health agency of Canada) and their role in lyme policies across the nation
  3. How provincial health ministries are dropping the ball and what needs to be done to pick it up and run with it.
  4. More stories from Canadians. Some are as sick as I am (or worse), but MANY look OK on the outside, but are barely functional and often not able to work.
  5. Doctors – afraid to diagnose, treat, even mention lyme disease to a patient. And some get extremely angry when lyme is mentioned, as if the greatest medical quackery that has ever existed is being proposed by the patient.
  6. Colleges of Physicians and Surgeons – they are enforcing an orthodoxy that doesn’t make sense, that has been proven wrong, that is harming Canadians, and results in the few doctors who do try to help being persecuted, harassed and even facing suspension and license removal.
  7. Insurance Companies. Right now there is an open season on Canadians with lyme disease. Insurance companies use the uncertainties and controversies (as well as Canada’s adoption of IDSA-style guidelines which do not recognize chronic lyme disease) to deny claims to continue with life insurance, get necessary medical equipment through extended health policies, deny claims for Long Term Disability, etc…). I myself am having significant trouble getting a hospital bed (I have been bedridden for over 3 years), my life insurer tried to terminate my life insurance policy due to my lyme diagnosis and long term disability status, and my LTD insurer tried to paint me as a psychiatric case to force me back to work even when I was clearly unable to.
  8. Tick surveillance – Canada generally has passive surveillance for lyme-infected ticks. There is no PROACTIVE scientific method for identifying densities of lyme-infected tick populations. As a result, public health agencies and health ministries have only a general idea where the risks are currently highest. And what about other disease-carrying vectors? Current research is indicating that ticks may not be the only carrier of lyme borrelia and other major co-infections.
  9. ?

There is so much more here. Thank you so much for a good beginning. CTV…Please don’t stop there.