Late-stage Lyme disease is very poorly defined – Jim Wilson

Mr. Jim Wilson, of the Canadian Lyme Disease Foundation, wrote a letter to the editor of Oxford Journals’ Clinical Infectious Diseases entitled “Concerns Regarding the Infectious Diseases Society of America Lyme Disease Clinical Practice Guidelines.” This letter was dated April 2007. Unfortunately not much has changed in the eyes of the policy makers or health practitioners since then, even though the same inconsistencies and the same oversights are ever present regarding Lyme disease.

Here is an excerpt from Mr. Wilson’s letter:

Late-stage Lyme disease is very poorly defined. Arthritic and neurologic manifestations have been mentioned, but are not well linked to the various symptoms that coexist with them. It is this array of variable symptoms, which often occur in the absence of arthritis or classic neurological manifestations, that collectively are so disabling in terms of quality of life for the patient and so costly for governments in terms of disability payments. The guidelines [1] refer to many of these symptoms as “the aches and pains of daily living” (p. 1115); however, no research has been presented that has had the specific design of determining all of the symptoms of late-stage Lyme disease. Symptoms such as overwhelming fatigue, pain, muscle dysfunction, cognitive dysfunction, psychiatric issues, breathing restrictions, eyesight and hearing problems, bowel dysfunction, and other manifestations that can be objectively measured, if proper measuring tools are employed, are common to late Lyme disease. Labeling these as “the aches and pains of daily living,” or as a “post-Lyme disease syndrome” (p. 1116) is a travesty at worst and is premature at best. Many symptoms have been discounted; in the guidelines [1], entire classes of potential therapies are disregarded because of this poor recognition of symptoms.

Read the full letter here.

Bill C-442

In June of this year (2012) Federal Green Party Leader Elizabeth May introduced Bill C-442 to public record. This bill calls for a national action plan to improve the testing, diagnosis, and treatment of Lyme disease.

If you are a Canadian citizen I encourage you to write to your federal MP and ask them to support Bill C-442. If we all push, it can only be a matter of time before the policy makers in this country start to get nudged off of their high horses.

I’ve written to my MP, will you?

Here is a copy of the letter I recently sent to my local MP:

Dear [my MP’s name],

I am a resident of Coquitlam. I was born in Canada 30 years ago and until recently have thought of myself as a proud Canadian; that is until I discovered that there was a good chance I suffered from Chronic Lyme Disease (CLD).

You see, after suffering for 20+ years, my symptoms finally became too much. They grew worse until I could no longer tolerate them. My doctor was quite happy to label me with IBS (irritable bowel syndrome) and depression, telling me that my physical pains were simply a symptom of my depression. Every doctor I went to see regarding my symptoms were so focused on handing me a prescription for pills or creams or ointments, that I don’t believe any of them actually listened to what I was telling them. Every time, I left their offices feeling as if I were being rush out of the door and left with treatments that never worked. I pleaded with one of my doctors, begged in fact, with tears flowing like a waterfall from my eyes, to send me to get tested for Lyme disease. She refused. Apparently because I was not able to definitively tell her when and where I was bitten by a tick, she flat out refused to believe that there was even the slightest chance of my having Lyme disease. I displayed so many of the symptoms of Lyme disease, including the rash, that I was baffled that she would not even consider sending me for a simple blood test.

I am one of the lucky ones. I was able to find a naturopath who would send my blood to a lab in the US to be tested. It came back positive. I have since began treatment for my CLD through my naturopath.

I have been suffering from a variety of symptoms since I was a young child. No doctor was ever able to link my symptoms to Lyme disease until now. Are they not taught about these things in medical school? Apparently not. Since my diagnosis I have tried to find out everything I can about Lyme Disease. Do you know what I found? That Canada doesn’t believe in the existence of CLD. Nice, isn’t it!?!? I have a disease that my government and medical system do not believe exists. Instead, they would rather label me with multiple clinical diagnoses including IBS and Depression and pump me full of chemicals to numb my pain…Not make it go away, just numb me to the feeling of it…Excuse me, but in the world of science shouldn’t physical evidence trump a clinical diagnosis? My blood says I have Lyme disease…Why is that so hard to believe? Oh wait! The Canadian doctors didn’t even want to test my blood…They refused.

I’m not going to ramble on and on about my fight with this terrible disease. Instead I am going to ask you 1 very simple and heartfelt question: What would you do if you were in my shoes?

I’d like to ask you to please support Elizabeth May’s Bill C-442. http://elizabethmaymp.ca/wp-content/uploads/C-442.pdf

Lyme disease does exist in a chronic form and it’s appalling that myself and thousands of other Canadians are left out in the cold, so to speak. Our country’s government and medical system have virtually left us out to die. Those who suffer from CLD are faced with a devastating quality of life all because no one has bothered to open their eyes to see that there is a serious health crisis in Canada.

Did you know that regardless of my CLD diagnosis, I am still able to donate blood? I could easily pass my disease on to others and it sickens me that for years before my diagnosis I did donate blood and I could be the cause of someone else’s pain. All because apparently the bacteria associated with Lyme disease is denied access to our country by the impeccable customs officers we employ. Did you know that ticks carried passports?

I apologize for my tone, but please take a moment to put yourself in my shoes. I wish I had cancer (how many times have you ever heard that?). At least that is a disease that is recognized by government and the medical system.

All I want is to be healthy and to live in a world where tick-borne diseases do not run rampant simply because of our ineffectual testing methods, and I dont’ think that’s too much to ask.

So I ask you, nay beg you, please support Bill C-442. It’s not much, but at least it’s a step in the right direction.

PS: In time, I promise you that Lyme disease will become a substantial topic in Canada. Wouldn’t you like your name to heralded as one who saw the plight of his people and did something about it? Wouldn’t you like to be one of the first to acknowledge this disease and actively pursue making it history? You have a choice to make Mr. Moore: To stand up for what is right and to be recognized as a leader in this country, or to sit back and fade into history as just another MP who could have made a difference, but didn’t? Who will you be?

CBC Reports Blood Tests in Canada Inadequate for Lyme Patients

The CBC recently reported on the fact that the blood tests used in Canada are horribly inadequate in identifying Lyme disease bacteria in patients. Jim Wilson, head of the Canadian Lyme Disease Foundation was quoted saying: “We have many strains of the Lyme bacteria. We’re only testing for one strain of one species … we think that is horribly wrong.”

Read the full story here.

What the video in the above link does not discuss, but what the written report touches on is the fact that Canada uses testing that has been considered out of date in the US for quite a while. The Canadian Health Authority would rather discredit the labs in the US who offer the Western Blot testing than admit that their sole testing option here is Canada is insufficient to accurately diagnose Lyme Disease. I challenge the Canadian authorities to pull their heads out of the sand and finally take note of the growing epidemic that is Lyme Disease.

Sometimes I Wish I Had Cancer…

It’s true. Sometimes I wish I had cancer. People understand cancer. The medical community believes that cancer exists and treats it, no matter at what stage it is. Governments and Medical Associations invest in cancer research. Insurance companies accept that cancer can be incredibly hard to treat and offers compensation to its customers who need to take time off of work in order to get well.

For years, the medical community denied the existence of Lyme disease. Although they have now finally accepted that Lyme exists, they are now denying the fact that Lyme can, and does, exist in a chronic state. It may take on new forms, may be partly due to co-infections, but the symptoms of Lyme disease persist over time.

I personally don’t care if after a few weeks of antibiotic treatment the bacteria is lessened or even gone. What good does a lessening or lack of bacteria do for me when I’m still suffering from the symptoms? Wikipedia defines “Chronic” as a disease that is long-lasting and reoccurring. I don’t know about you, but Lyme sure sounds like a chronic illness to me, so why not just call it Chronic Lyme Disease if you still suffer the symptoms after having gone through 3-4 weeks of antibiotic treatment?

3-4 weeks of antibiotics did not ‘cure’ my Lyme. 3 months of antibiotics did not ‘cure’ my Lyme. I believe that a combination protocol of varying antibiotics (since the Lyme bacteria is known for its chameleon nature) as well as strong herbal supplements will reduce the effect of the Lyme bacteria on my system. I may never be ‘cured’, but I do believe that I can live a better quality of life by getting my Lyme under control and giving my own immune system the strength to keep my Lyme in check.

So yes, I do wish I had Cancer sometimes…at least then I would have the support of the medical community, government, insurance companies, and the general public. Instead the cards I got dealt include miss-diagnoses, conflict, controversy, political and medical neglect, and the general public’s inability to comprehend anything I’m going through. What a hand, eh?!?!?

Limited Understanding: Can Others Ever Really Comprehend?

I’m often surprised by how many people utter the words “I understand” or “I get it” or “I know how you feel.” They don’t. They can’t. They don’t live in my head. They don’t share a nervous system with me. They don’t share a digestive tract with me. They don’t share my skin. They don’t know how it feels to not be able to fall asleep because of a sickeningly irritating and itchy rash has taken over your skin. They don’t bloat up and have intestinal pains at the mere thought of food. They aren’t plagued with migrating pains that come on at the drop of a hat and stick around for a few seconds to a few weeks (I’m just finishing up week 3 of consistent pain in my neck/shoulder area and day 2 of hip/knee pain). They don’t know what it’s like to have all of this and more going on in their bodies day in and day out. They aren’t sitting here typing while pain radiates through my right side, from abdomen to collar bone.

A tip for all of those people who don’t have Lyme disease, but who interact with someone who does: Just be there. Don’t tell them that you get it, because you don’t and those words just make them feel more isolated and alone. Tell them that you’re there to help in any way you can. Tell them that you care about them and want them to get better. Offer to help them out with something. Offer a shoulder to cry on. Give us hugs! Pray for us. Love us. Reiterate to us that we’re not alone in our fight. Remind us that you are there for us. That’s all we want…someone to show us that they care. The medical community has largely turned their backs on us and just to know that people out there care about us makes a world of difference to our mental abilities to fight this terrible disease.

A huge THANK YOU to my wonderful husband who gets it. He doesn’t understand my disease, doesn’t know exactly what I’m going through, but he understands that what I need from him is not understanding, but rather, love. Pure and simple.

Have you hugged a Lymie today? They could probably use it….

My Lyme Rash: The Good, The Bad, & The Ugly

It started as a patch of dry and itchy skin on my chest.

I used moisturizer and increased my intake of good oils and it eventually went away after a few days. Then it came back a couple of weeks later. I repeated my treatment regiment and it went away. Then it came back again, but this time it brought a friend. I developed 2 spots. I continued with the same treatments which had worked in the past, but this time the spots were much more stubborn. They did not dissipate. They didn’t even really lessen in severity at all. They got worse.

The dry patches started to crack and bleed and got even itchier.

The next thing I knew, it was more than a year later and the spots were still there. There were 3 of them by that time. At some point the spots stopped responding to moisturizers. They actually started to fight against them. The more moisture I applied and/or exposed my skin to, the more irritated the spots would become. I tried everything I could think of. Changed every possible thing in my life that could have been an irritant, including foods, soaps, make up, everything.

Time to call in reinforcements.

Doctor #1 thought that it might be a localized infection and prescribed some anti-fungal and anti-biotic creams to try. These worked for a time, but as soon as the treatment ended, the spots came back.

Then they started to multiply.

In the span of approx. 3 months I went from 3 spots on my chest to over 50 all over my body.

Doctor #2 was a real gem! General consensus was that it was just some eczema which I hadn’t had since I was young, but that did run in my family. Nothing the doctors could do for that except give me more creams and ointments to try; which I did. When those didn’t work, doc #2 had the audacity to recommend that I basically become a moisturizing Nazi.

Oh great idea doc! (insert eye roll here)

Within 2 weeks of using eczema and psoriasis specific moisturizers my spots felt as if they were on fire! By the time I was able to get back in to see the doctor and show her what her ‘brilliant’ moisturizing idea did to me. All of my spots were inflamed, painful, itchy to no end, flaky, etc. I even had about 5 spots which were seeping non-stop. I wasn’t able to sleep more than a few hours a night because the itch would make it near impossible to fall asleep. When I would finally be asleep, and end up rolling over, it would cause those now dried-to-my-clothing spots to pull away from the fabric of my PJs and tear the wounds open again. Oh ya…Great times!

It was at this point when I gave up on the medical system and reached for help from anywhere I could find it. Thank goodness for an intuitive that I went to see. He was the only one who brought the possibility of Lyme to my attention. He was the one who told me that it was not eczema; that it was a Lyme rash.

Since that day, my life has been turned upside down. My MD didn’t believe that a Lyme diagnosis was possible and flat our refused to even send me for blood tests. She is not longer my MD. I sought the help of a LLND and am so happy that I did. I still have my rash, and whenever I herx it still gets worse, but I’m on my way. I’m now on my path towards health and wellness.

A glimpse of my Lyme rash on the outside of my left leg.

I wonder how many others out there are suffering from eczema when it may actually be a Lyme rash?

You Brought Tears to My Eyes…

Since my Chronic Lyme Disease (CLD) diagnosis, I’ve reached out to the Lyme community through direct emails to other Lymies and through this blog. I’ve read about some pretty terrible stories. There are people out there really suffering and feeling isolated, alone, frustrated, and fearful of what their lives will become.

I’ve been there.

I really have.

I’m currently on the down slop of another Herx…a pretty intense on too…and when I read about how much pain some of my fellow Lymies are in, it tears at my heart and really does bring tears to my eyes. I’ve always been the tough chick. The one that could handle anything. You know what? I found the one thing that breaks me apart inside: true understanding. That feeling you get when you read someone’s story and say to yourself “wow – that was me, is this person living in my own head or something?” I know my battle is not over. I have my good days and I have my bad days, but I know that slowly and surely I AM getting better. I’m winning my battle. So when I hear about others who are still in that state of mind where they haven’t had that breath of fresh air that energizes them and helps to push them through to the next good day, I feel sad.

I want to make their pain go away.

I just hope that my words, whether read through this blog or offered through comments on a fellow Lymie’s post will help some of you, just as words from others have helped me. As I’ve said before and will continue to preach: we’re all in this together.

We fight together, we win together.

Working together and helping each other is the only way that any of us are going to get through this. We are pioneers in the battle against Lyme Disease. There were many before us, and there will unfortunately be many after us, but we have something that our predecessors didn’t have: Each other. We have this lovely thing called the internet where we get to use social media to promote our cause and to find that support that we all so desperately need. It will be our generation of sufferers who will bring Chronic Lyme Disease to the forefront. It is our time to push for answers. It is our time to shed light on this horrible disease. And it is our time to kill it. We are so much stronger as a team than we are as individuals (and there are some pretty touch people in this fight with us!).

How about it?
Are you in?
Are you a Lymie who’s decided that enough is enough?
Are you fighting?
Are you someone who is trying to help support a Lymie?
Are you struggling to understand?

Together we can make CLD history…Who’s with me?

The Spoon Theory

The Spoon Theory by Christine Miserandino

Please take a moment to read this amazingly insightful article written by Ms. Miserandino, who suffers from Lupus. Here ‘spoon’ analogy holds true for virtually all chronic illness such as Fibromyalgia, MS, or Lyme disease, just to name a few.

I’ve been trying to come up with a way to explain how I feel to others for years; long before I was ever diagnosed with Lyme Disease. Thank you Ms. Miserandino for this priceless tool, you are an angel. I encourage everyone to visit ButYouDontLookSick.com to learn more about her story…It’s truly inspirational (and a little tongue-in-cheek too!).

Australia Bites Back

I stumbled across a link to this report through another blog and thought I would share it here. Canada is unfortunately not doing much more than Australia for Lyme disease patients. Let’s hope that the tide is turning and that more and more countries will start to recognize chronic Lyme disease for what it is: A real disease that can be treated (even if not entirely cured) in order to allow its sufferers to live a better quality of life. No one should have to die to make this happen, but unfortunately too many already have and so many more may if we don’t make this change happen.

http://www.abc.net.au/news/2012-09-14/victims-demand-lyme-disease-recognition/4262580

Mental Anguish

Today is a good day. There are few days when I can say that. Battling Lyme disease is hard, sometimes physically, sometimes mentally, and sometimes both; every day is a struggle.

Prior to my Lyme diagnosis, my doctor at the time was convinced that my physical pains were a result of my mental status. I was suffering from moderate to severe depression. I was numb. Happiness was a foreign concept to me, sadness was my norm, and tears regularly ran from my eyes. Through my struggle with Lyme, these symptoms have not dissipated, although they at least have a root cause that I can associate them to.

The worst part of my mental symptoms from Lyme disease are the blanks, moments throughout my days when, in the middle of a sentence, I will forget a word. This used to happen to me periodically, once in a blue moon, but never to this extent and never this often. The simplicity of the words I blank on has worsened as well. I used to blank on large or more complex words, now I blank on words as simple as ‘cat’ or ‘spoon’. It’s when these moments, these blanks, are the most frequent that I feel the most broken, the more I feel a shell of my former self, the more I worry about dementia and fear that had I not caught my Lyme soon, that I would have spiraled downward at rapid speed into the spectrum of dementia related illness which scars me to no end.

Keep in mind that although I have likely had Lyme since a young age, my own immune system has kept it in check, that is until chronic elevated stress compromised my immune system, allowing the Lyme to multiply unhindered until the symptoms became exacerbated. Some symptoms thought have been present as far back as I can remember. So to have a black cloud of worsening symptoms growing over my head, especially when those symptoms were both physical and mental, was enough to start that downward spiral I was so worried about traveling down.

Today, now about 5 months into my treatment, I still fight daily for inner happiness. I’m easily flustered, easily frustrated, easily saddened, easily stricken with despair, deeply anxious and troubled. But now that mental anguish has a source and that, in and of itself, is a sort of relief. It still scares me when I blank on words or feel my depression overpower me, but knowing the reasons behind it are helpful in being able to break out of those moods with more success.

I’ve never been one to believe that depression is a disease of its own; rather I believe it is a symptom of an even greater problem. In my case, that problem is Lyme. With that in mind, I am now mentally in a better place to tackle my depression. I know what is causing it and that there really is a light at the end of this dark tunnel that I’ve been stuck in.

This day is one where that light seems a little brighter. It’s still a long way away, but I can see it.