A superb book

I have finally finished Cure Unknown - Inside the Lyme Epidemic by Pamela Weintraub.  I've been working on it for at least a year!  There is a lot to digest with this book, and Weintraub has left no stone unturned in this study of the history and politics surrounding Lyme. 

Weintraub, her husband, and their 3 children all contracted Lyme disease, and she tells their story in detail.....from onset of illness, to misdiagnosis, to diagnosis, to treatment.  I'm sure many of you can relate!  (Me, too.)

 

 

Weintraub offers many excellent insights into the Lyme predicament.  One of her statements struck me as I read today:

 

"When it comes to science, questions on methodology are crucial.  Science can be flawed, it can be tricky, Jonas Salk taught me, but science is all we have.  If we are ever to unravel the mysteries of Lyme disease and find a cure, it is science - pure and unadulterated - that will lead us home.  We need science, but different science.  We must travel the road not taken.  Sometimes you just need to start again."  (p. 348)

 

This got me thinking about all of the effort that is going into this grassroots Lyme movement, led mainly by the victims and their families.  These efforts would include support groups, community viewings of Under Our Skin, interviews on local television and radio, letters to the editor, blogs, websites, information booths, Lyme walks, green bracelets and t-shirts, books, petitions, and seminars.  (Wow!)  But what, I ask, are these things accomplishing, apart from informing the public about the dangers of ticks and providing information to those who are sick?  For ALL of this effort, have we truly advanced our cause?

 

Well, perhaps there has been some improvement.  LLMDs are no longer persecuted in many U.S states now due to the passage of laws protecting them.  But there remains the issue of the CDC and the IDSA who have dug in their heels and refused to acknowledge that there is another useful standard of treatment.  And this is despite the evidence of so MANY clinical cases.....myself being one of them. 

 

So, what will it take?  What will change the system?  As Weintraub stated, we are going to need science to prove us right before there will be any sort of real change in the way Lyme is diagnosed and treated.  And so, we must do what we can to support this research and to get it published.  There is research happening as we speak, but we have yet to see a lot of fruit from their labour, i.e., true changes in the "system". 

 

And yet, though this post sounds a bit pessimistic, I truly do believe that one day things will change.  It will just take time.....lots of time.....but unfortunately many people just don't have a lot of time to wait.





FAQ: "So why can't you get treatment for Lyme disease in Canada?"

Hi Everyone!

A while back, I mentioned that I had started to read Pamela Weintraub's book, Cure Unknown - Inside the Lyme Epidemic.  I'm 2/3 way through the book now, and all I can say is that it is excellent!  

 

This book is truly a must-read for anyone who wants to better understand the history of Lyme disease and the controversy surrounding diagnosis and treatment.  Weintraub is a fabulous writer, and she masterfully blends her family's personal story with the science and history behind Lyme.

 

One of the most common questions I'm asked is.....Why do you need to go to the U.S. for treatment?  Why don't they treat it here in Canada?

 

Wow.....that's a hard question to answer in a couple of sentences.  There is an entire history behind that question.  Just read chapter 32 - The Lyme Inquisition:  Doctors on the Run.  That will give you some background into the craziness of this illness.  I sat in a coffee shop this morning and brought the book with me to pass the time, and I just couldn't leave until I had finished that chapter.  Gripping.

 

If you have done any Lyme research at all, you have no doubt heard of Dr. Joseph Burrascano.  He was one of the first big U.S. Lyme doctors to treat chronic Lyme successfully, and also to be hauled up before the New York State OPMC (Office of Professional Medical Conduct) in 1999.  For all intents and purposes, he WON that hearing, and we in the Lyme community have benefitted greatly from his research and expertise since that time.

 

In 1993, Dr. Burrascano had spoken before a Senate committee on Lyme disease, chaired by Ted Kennedy.  His words were sharp and cutting:

 

There is a core group of university-based Lyme disease researchers and physicians whose opinions carry a great deal of weight.  Unfortunately many of them act unscientifically and unethically....They adhere to outdated, self-serving views and attempt to personally discredit those whose opinions differ from their own.  They exert strong, ethically questionable influence on medical journals, which enables them to publish and promote articles that are badly flawed.  They work with government agencies to bias the agenda of consensus meetings, and have worked to exclude from these meetings and scientific seminars those with alternate opinions.  They behave this way for reasons of personal or professional gain, and are involved in obvious conflicts of interest....Some of them are known to have received large consulting fees from insurance companies to advise them to curtail coverage for any antibiotic therapy...even if the patients will suffer.  This is despite the fact that additional therapy may be beneficial, and despite the fact that such practices never occur in treating other diseases.

                                                                                                         Cure Unknown, p. 221

 

I am happy to report that since then, the U.S. has come a long way in its understanding and treatment of Lyme disease.  Yes, there is still a divide in the medical community.  But one by one, states are passing laws allowing physicians to treat chronic Lyme disease with long-term therapy.

 

Sadly, Canada is currently at the spot where the U.S. was in the 1990s.  Physicians are bound to adhere to the outdated IDSA (Infectious Diseases Society of America) guidelines, or else suffer repercussions from the medical boards.  Canadian doctors who have helped a great many Lyme sufferers in the past few years, have been shut down one by one.  Some have chosen retirement, and others have stopped treating Lyme patients cold turkey.

 

I think the reason for this lag in understanding is the simple fact that Lyme disease is relatively new in Canada.  It has been working its way northward for many years, and now it is HERE in full bloom.  But doctors here don't know what to do with it!  They have no training in how to recognize it, diagnose it, and treat it properly.  So, Canadian Lyme patients are forced to flock to the States and pay out of pocket to regain their health.

 

In a nutshell, there's your answer to, "Why can't you get treatment in Canada?"



The Phases of Lyme

I finally started reading this book today.  Although I knew it to be an excellent resource, I just couldn't find it in me to read it while I was really ill.  I think, at the time, I just couldn't handle the information.  I was too scared.  But now that I've emerged from this illness, I think I can look at the topic more objectively.

Pamela Weintraub is a medical journalist who contracted Lyme disease in the early 1990s, along with her husband and two children.  So far, I've only read the Foreward and Introduction, but one statement really rang true for me and so many others with Lyme:

"When the head of infectious disease at Northern Westchester Hospital put his imprimatur on the diagnosis, we had an explanation for Jason's illness and an inkling as to what might be wrong with the rest of us, at last.

Our nightmare had just begun."  (p. 2)

Doesn't that sum it up?!  "Our nightmare had just begun."

This got me thinking about the whole process you go through from first symptoms to cure/remission.  In my opinion, Lyme sufferers go through 4 phases.

Phase 1 is when you are trying desperately to figure out what is wrong with you.  The doctors can't find anything conclusive, you have testing done, and nothing jumps out at even the specialists.  They might even tell you it's stress or anxiety!  You fight back.  You research things on your own.  You come up with the possibility of Lyme disease, and you send your blood to Igenex.  You discover that it IS Lyme!  You are so relieved that you have figured this out, without even the help of the local medical community.  Now, you can start treatment and get your life back!

Not so fast. 

You enter Phase 2.....the real beginning of the nightmare!  You search for a physician who will treat you.  No doctor around will touch you with a ten-foot pole.  They don't believe your Igenex results.  You search for a Lyme-literate medical doctor.  You contact Lyme groups for information.  You finally find a doctor, but he is in another country!  You get on a waiting list....and you wait, and wait, and wait....helpless at this point.  And you wonder how you will manage to get to appointments when you're feeling so weak and horrible.  Not to mention how you are going to pay for this treatment.  It's all so mindboggling, as you try to figure this out in your Lyme-fogged brain. 

But the story continues.....Phase 3.  You get the logistics all ironed out, and you begin treatment.  You're afraid because your doctor is so far away.  What if you have side-effects from the medication?  What do you do if you get worse?  You experience your first herxheimer reaction and you get really scared.  You read, and read, and read.  Looking things up on the internet practically becomes an obsession.  You search for websites and blogs.  You connect with other Lyme sufferers who can encourage you.  You have your ups and downs.  But slowly, over time, you start to improve.  You get a little better with each passing month.  You gain more confidence in your LLMD (who family and friends, and certainly your GP may think is a quack), and you're so grateful to have found him. 

And then comes the last phase.....Phase 4.  You actually recover!  You realize that you haven't herxed in a few months, and your symptoms have just faded away.  You are sleeping so much better, and the pain is gone.  It's a miracle!  And now it's time to come off the medication.  You can hardly believe that you made it through, but you did.  And now you try to take the best care of yourself that you can, to keep your immune system strong so you don't relapse.  You get back to your job, your friends, and your favourite activities.  You begin to enjoy life again, and are forever thankful for everyone who helped you along the way, and for your LLMD. 

After all you've been through, you are forever changed.  You truly have a new perspective on life.