A Medical War

One thing is for certain......we are at war.  There are casualties.  And there are some survivors.  Many are hovering in no man's land.  There is anger and there is misunderstanding.  Right now, it's messy.  And dangerous for many.  But I do think my side is gaining ground.

It's the Lyme war. 

People ask me, "Why can't you get treatment here?  Why don't doctors understand about this illness?"  Here is one LLMD's answer to this question.  You can check out his wealth of knowledge on his blog LymeMD.  This is what Dr. Jaller posted yesterday.

Why your doctor does not believe in Lyme disease

In his new book, Dr. Horowitz gently discusses the issue. He talks about a paradigm change. This doesn’t answer the question for patients on a visceral level.

I surveyed some physician friend colleagues asked them if they can think of another disease that has been as divisive as Lyme disease.  They always come up empty-handed.  

Your doctor is being bashed by medical boards, ridiculed by other medical professionals, even shunned and ostracized and generally not having a good time (in some arenas, not globally).

You are angry, infuriated, incensed, bellicose or just pissed off. 

Patients new to this world all ask same question.  Why?

There is a war going on. Years ago, I had a conversation with an infectious diseases specialist I thought was collegial; at the end of the discussion I said “I guess we’ll just have to agree to disagree.” She said no we won’t and proceeded to report me to the Medical Board. Doctors don’t usually report their colleagues to Medical Boards. Most follow the rule, “people who live in glass houses shouldn’t throw stones”

Phenomenologically, Dr. Steere and infectious diseases specialists saw Lyme as a vector borne illness causing joint pain or rash: something straightforward. Something easy to treat.

Phenomenologically, Dr. Burrascano and primary care colleagues saw patients in Lyme endemic areas as poly-symptomatic; patients had every symptom in the book.

Dr. Steere, Dr. Burrascano, myself and likely all the physicians I can think of were taught that there is no disease that causes so many disparate symptoms. They have a “positive review of systems,” meaning they have a psychiatric disorder. Easy one.  

Lyme breaks the mold.

Dr. Burrascano and others thought all these patients cannot be crazy; something else is going on. The cohort of sick patients lived in rural areas known to have a lot of Lyme, they enjoyed outdoor activities, they had a history of previously treated Lyme disease, they had a history of tick bites, the had a history of rashes and summer flus, or they just had an insidious, progressive disease. 

First impressions are important. Dr. Steere’s first impression was that Lyme causes joint pain and is easy to treat.

Dr. Burrascano’s first impression was that these were very sick patients, commonly referred to a “train wrecks.” These patients got better when given antibiotics; symptoms returned when antibiotics were stopped; symptoms got better again antibiotics were restarted. The first impression was that Lyme is a complex multi-system disease which is hard to treat.

These two groups were describing something entirely different, something universes apart. Both were called Lyme disease. 

The war began. Steere was reported to a Medical Board. Burrascano was doomed. Once the war broke out the truth didn’t matter. Since Steere and his colleagues are associated with Ivy League institutions they won the battle. They have created educational programs for doctors espousing their point of view and ridiculing the views of the other camp.

I hope the answer to the big question is contained in the above narrative. 

In this war I see the IDSA crowd is calling lymies and their doctors crazy and “antiscience.”  Lymies believe the IDSA crowd is involved in some vast conspiracy. Get a grip.

It comes down to stubbornness, hubris and ego. They call me “antiscience.” A friend once told me: “watch what they call you; that is what they are.”
 

Compare and Contrast

At the risk of sounding like a teacher (....oh ya, I am a teacher), please read the following two letters and note the similarities and differences.  Both letters were written regarding Elizabeth May's bill C-442 (to create a National Lyme Strategy in Canada), which, by the way, was presented for second reading in Parliament today.  Perhaps this little exercise will help to demonstrate the great "divide" in the world of Lyme.

A letter to me from Conservative MP Susan Truppe

Dear Ms. ________ , 

Thank you for your email concerning MP Elizabeth May’s Private Members Bill – Bill C-442, The National Lyme Disease Strategy Act. I appreciate the time taken to share your views with me and for showing interest in this healthcare policy proposal.

First let me assure you, our Government is committed to the health and safety of all Canadians. Putting the interests of Canadians and their families first is always top of mind.

The Public Health Agency of Canada is working to support the provinces and territories in addressing Lyme disease. Our Government is committed to working collectively and collaboratively with our healthcare partners to find meaningful solutions.

We have invested over $4.5 million for research related to Lyme disease since 2006. In addition, we have established improved surveillance specifically aimed at Lyme disease so that action can be taken quickly and effectively.

In regards to Ms. May’s Bill and the call for a national Lyme disease strategy, we are currently reviewing its merits.

Most importantly, our Government will continue to actively engage with provincial and territorial partners in monitoring the spread and development of Lyme disease. Canadians can rely on this Government’s management of healthcare priorities and continued leadership.

Once again, thank you for taking the time to write in.

Yours sincerely,

Susan Truppe, M.P.

 

 

An open letter from Dr. Murakami (Canadian Lyme-literate medical doctor and Lyme educator) to Members of Parliament who will be voting on Bill C-442

To all Politicians Voting on the Bill 442.

February 12, 2014

SYPHILIS THEN, LYME NOW

The serious epidemic of Lyme disease is present now but not "prominent" in Canada because the Medical divide that exists in our association. Doctors are told that Lyme disease is a non-existent rare infection and without a proper ELISA test (which is grossly inadequate) the diagnosis of Lyme disease is being... misdiagnosed.

The federal government has stated that Lyme disease is a clinical diagnosis and a positive lab test is beneficial but not necessary in the establishment of a diagnosis but unfortunately there are differences of thought by our peers.

We have adopted the American IDSA guidelines for practicing physicians and in Canada we have adopted these guidelines without any previous discussions of having our own Canadian guidelines.

We must become more educated and clinically aware of this most rapidly growing vector borne infection. Most recently, the naysayers in the United States have admitted to 300,000 cases annually up from 30,000. This would reflect automatically 30,000 (10%) as a minimum number of cases in Canada and yet only about a few hundred cases are annually reported across Canada which is extremely low and misleading.

Patients are suffering needlessly, expending monies across the border and into Europe for proper treatment and diagnosis. This cannot continue and as physicians we must be more aware that the symptoms of Lyme disease which is and are being misdiagnosed. To give an example, MS in Canada is the absolute highest in the world, 240-340 cases per 100,000 and we have the lowest number of Lyme disease in the world (WHO).

The big divide has led to the necessity of the legal system stepping in to protect Lyme Literate doctors. Twelve USA states have become involved since the medical profession will not openly discuss all aspects of this disease. Statutes and laws are now in place for the protection of Lyme literate physicians and their charts cannot be taken, doctors cannot be cross-examined, their licenses cannot be taken away.

It is simply a matter for our profession to discuss this disease as we have with all other diseases in the world. Clinicians must include Lyme disease and co-infections in the differential diagnosis and be cognizant of all the symptoms that can occur since it is a multi-organ system failure that occurs.

At the present time, patients suffer needlessly; mentally, physically and financially with the most common cause of death being suicide. The answer appears to be very simple that we must dialogue openly and regularly.

On the side of being optimistic there are increasing numbers of medical doctors and naturopathic doctors treating Lyme disease. This would indicate a greater understanding and acceptance for this disease and it is hoped that this will continue with greater alacrity, education and hopefully better lab testing with mutual medical understanding by the "divided" physicians. There is no time for complacency.

Yours truly,

Dr. Ernie Murakami, MD, BA in Bacteriology and Immunology
Clinical Associate Professor Emeritus University of British Columbia
President, Dr. E. Murakami Centre for Lyme

I would Like to add that in my travels in every Province across Canada that every lecture was attended by a minimum of 50% and up to a maximum 75% Lyme Disease sufferers. The only Provinces that I have not attended was PEI and Quebec but I have corresponded with many patients from both of these provinces. The results were assessed by a show of hands before meetings and Wendy Atkin from Kinston Ontario told her story to an over filled room of which there was the 75% Lyme sufferers. The Ambassador Hotel donated the room which held 250 people and another 100 were refused entry. Yet every day there are doctors telling their patients that there is virtually no cases of Lyme disease in Canada. How long must we live with this misinformation causing severe suffering of Canadians caused by the DIVIDE in our medical profession.

Two good articles

I've noticed quite an increase in media attention about Lyme disease in the past couple of years, and it continues to make headlines.  That's great because the more we educate the public, the better they can protect themselves.  Here is a good article from the online Hamilton Spectator explaining the Canadian Lyme controversy.  Click here.

Another good post I read today was from the blog Lyme MD.  Dr. Jaller is an LLMD in Maryland, and he writes about cases he sees in his office.  He recently posted some rebuttals to "lies" that the medical community spreads about Lyme testing.  It's an interesting read.  Click here.

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?"



Learning to live with the opposition

It's hard to be wrong.  But it's harder to be right, and have people think you're wrong.  It's frustrating, it's isolating, it's demeaning, it's (add the adjective that applies to you).  For almost 2 years now, I've had to deal with the naysayers in my life.

I experienced another situation today in which a medical professional expressed her doubt about Lyme disease....not directly, but through other circumstances.  I can't go into the details right now; perhaps I will be able to later, as it really is a situation that I'd like to write about.

I left that appointment frustrated on a number of levels: 

1) Why will medical professionals not read up on this issue and learn about the controversy? There is a controversy for a reason!  Watch Under Our Skin.  Learn about why Elizabeth May has introduced a National Lyme Bill.  Consider the fact that in Canada, Lyme is supposed to be a clinical diagnosis.  (Though this is never practised.)  Develop a curiosity about why there are very few cases of Lyme Disease reported in Canada compared to the U.S.  Do you think ticks stop at the border?  Well, of course not!  Research and discover for yourself that we have inadequate lab tests here, and inadequate teaching about this illness among doctors.

2) Am I not living proof that the long-term antibiotic treatment prescribed by my U.S. Lyme doctor actually works?  Why do you still not believe?  I was SO sick, and now I'm well!  Do you think this is all a coincidence?  Are you so deeply entrenched in your faulty beliefs that you are blind to the clinical evidence before your eyes?

3) I think that she must believe that since my anxiety has cleared up, that is why the physical symptoms have gone away.  Wrong.  Wrong.  Wrong.  The antibiotics cleared the infection, and my brain chemicals returned to normal.  My physical symptoms were not caused by anxiety.  Again, read up on neuropsychiatric Lyme.  The information is accessible to all.

As I contemplated my appointment and how deflated I felt afterward, I had to turn my thoughts to the people who HAVE been a support to me.  I thought about the online Lyme community that I have become acquainted with.  There are so many people going through the same thing.  We are in this together, and we are a great support to one another.  I thought about the two Lyme-literate doctors in the U.S. who diagnosed me with Lyme.  These LLMDs as we call them, go out on a limb for us every day.  They do what they do despite what other doctors think......and we all know what most other doctors think!  I thought about Elizabeth May, battling for us in Parliament to get her bill for a National Lyme Strategy passed.  I thought about Jim Wilson, founder of CanLyme (The Canadian Lyme Disease Foundation) who suffered from Lyme himself, and now provides an invaluable resource for Canadians with Lyme.  (See the CanLyme website.)  I thought about my colleagues who have signed the petition I have posted at work.  I thought about my husband, some family, and friends who stuck by me and supported me throughout my illness.  I thought about a certain psychologist and a Christian counsellor who both supported me throughout this ordeal and believed that my illness was physical in nature.  I thought about God, who never left me, not for a moment, during those months of agony.  He gave me the strength to persevere and ultimately healed me through the knowledgeable physicians he led me to.

I did a lot of 'thinking' this afternoon, and it has helped.

Lyme patients need to develop a thick skin because there will be plenty of opposition along the way.  Keep looking straight ahead and forge on!  Find that support network and draw them close.  Learn to let the negative comments roll off you. 

You know you're right, and one day you will be vindicated.

A story you will never forget

It is so worth it to take the time to watch such an amazing story of love, suffering, faith, and hope.  I continue to be in awe of this Canadian couple, following Christa on Facebook.  She continues to do remarkably well and has jumped back into life with both feet.  I am so glad their video is back up on YouTube to show the world the suffering imposed upon Lyme victims by the medical community who is so terribly ignorant of this illness.  Go grab a cup of tea or coffee, and settle in for an hour to share Christa and Justin's journey with them.

Our Story - Life & Lyme

Justin and Christa Vanderham

Dear doctor

Here are letters I'd love to send to some of the doctors I saw in 2011.  Of course, I never will.  But writing them was cathartic, and a reminder of what I was up against in getting proper treatment for Lyme disease.

Dear Emergency Room Doctor #2,

I'm sure you don't remember me.  I was an ER patient in February of 2011. 

The night I came with my husband to the ER was one of the worst nights of my life.  I hadn't slept in about 3 weeks due to insomnia, and had horrible vibrations in my legs and worst of all, head. I had so many awful symptoms.  My husband helped me limp out of my house, drove me to the ER, and stayed with me for who knows how many hours before I was finally ushered into an 'pod'. 

You listened to me, but couldn't piece together all of my symptoms.  You did arrange for an immediate CT scan, though, which revealed nothing abnormal.  Your resident gave me a neurological exam.  You then pulled my husband aside and asked him if I was doing illegal drugs.  He told you NO because, of course, I was NOT!!!  Why did you feel the need, just a short time later, to ask him this same question again?  Why did you not believe his answer?  Did my symptoms appear to you to be some kind of drug withdrawal symptom?  Was I acting like a drug addict?   

You finally decided to put a referral in to Urgent Neuro, but unfortunately I got a call from that department a few days later to say that I did not qualify. 

I left the ER with no answers, and two prescriptions:  Ativan and Imovane.  I was to take them together to help me fall asleep.

I just want you to know that I finally did receive a diagnosis and positive blood test for Lyme disease.  I know that doctors have very little knowledge of the symptoms of late-stage Lyme disease, but if you had known more, I might have been spared months of suffering.  Perhaps this information will help others who come to you with unusual symptoms.

Yours sincerely,
Paula 

Dear Emergency Room Doctor #3

I'm sure you don't remember me.  I was an ER patient in March of 2011.

My husband drove me to the ER because I was so physically ill and overcome with anxiety.  Feelings of dread were just washing over me, and I couldn't control it.  I knew I needed help.

My body was literally shaking as I lay on the examining table.  I just couldn't control the shaking or my emotions.

I talked to you about my suspicion of Lyme disease, and you truly convinced me that I needed to forget about this crazy idea and work on my anxiety, and that an SSRI would help me immensely.

You really were a very kind doctor, and I appreciated the time you took with me.  You were calming, and really did have me convinced that this was all the result of the great stressors I had in my life.

I left with a sub-lingual Ativan and an encouragement to go back to my family doctor.

I just want you to know that I finally did receive a diagnosis and positive blood test for Lyme disease.  I know that doctors have very little knowledge of the symptoms of late-stage Lyme disease, but if you had known more, I might have been spared months of suffering.  Perhaps this information will help others who come to you with unusual symptoms.

Yours sincerely,
Paula

Dear Doctor of Psychiatry,

Perhaps you remember me, who knows?  I was a patient of yours in the spring of 2011.

I came to you because of the great anxiety I had, because of stressors I had in my life, and because of the inability of doctors to figure out what was causing my horrendous physical symptoms.

You listened, and then explained to me that I had a 'tired nervous system' from all of the stress I had been under in the previous several years, caring for a husband who was seriously ill.  How my tender glands and low-grade fevers factor into this, I do not know.

I talked to you about my fears, and my belief that I had Lyme disease.  You listened, but refused to consider it. 

When I finally received the positive blood test results, I was so elated to finally know what was wrong with me!  I came to my appointment so excited to tell you that I had an answer!

But you didn't want to hear anything about it.

You cut me off.  You scolded me.  You told me that you did not need a lecture on Lyme disease.  You told me to stop treating your office like a medical clinic.  You told me that I must stop talking about Lyme disease in the appointments, and not to come back to see you unless I was willing to work on other areas of my life.

What was the problem exactly?  Was it your pride that refused to believe that you were wrong in your 'diagnosis' of me?  Were you insulted that I challenged your diagnosis?  It was never my intention to sound as though I was second-guessing what you were telling me.  But I had to dig deeper because I just felt so physically ill.  I was truly expecting you to be thrilled for me that I had a positive Lyme blood test.  Instead, you reprimanded me.  I will never forget how you treated me that day.

That was obviously the end of our doctor-patient relationship. 

I just want you to know that I have been on antibiotic treatment for 15 months now, and I'm feeling really good.  One by one, the symptoms started to fade away, and I have regained my strength.  Had you known anything about neuro-psychiatric Lyme disease, I might have been spared months of suffering.  Perhaps this information will help others who come to you with unusual symptoms.

Yours sincerely,
Paula

Dear Neurologist #1,

I'm sure you don't remember me.  I was your patient in January of 2011.

I was referred to you because I had all kinds of strange neurological symptoms, the worst of which was vibrations in my head which prevented me from falling asleep.  I also had vibrations in my legs.
You performed a very thorough examination on me, and couldn't find anything 'wrong'.  You ruled out any debilitating neurological disease such as MS or ALS, but you could not offer any reason for my symptoms.

Out of desperation, I came back to you two months later to ask if there was anyone you could refer me to.  Maybe you could think of a colleague somewhere who might have some particular expertise, and who could help to diagnose me.  Your answer was 'no'.  You explained that sometimes we just don't know why these things happen, and there just aren't any other tests to run on me.

I showed you my positive Igenex test results, and you were very skeptical.  You glanced at them, and told me that you would consider it a 'negative' result.  Why would you say it was negative, when Igenex called it positive?  I have several positive bands on the Western blot.  Do you have any expertise in reading Lyme Western blots? 

I never saw you again.  What more could you do for me?

I just want you to know that I finally did receive a diagnosis of Lyme disease from a physician in the U.S.  I know that doctors in Canada have very little knowledge of the symptoms of late-stage Lyme disease, but if you had known more, I might have been spared months of suffering.  I have been on antibiotics for 15 months, and almost all of my neurological symptoms have disappeared.  Perhaps this information will help others who come to you with unusual symptoms.

Sincerely yours,
Paula

Dear Neurologist #2

I'm sure you don't remember me.  I had an appointment with you in March of 2011.

I was referred to you because I had all kinds of strange neurological symptoms, the worst of which was vibrations in my head which prevented me from falling asleep.  I also had vibrations in my legs.
You performed a neurological exam on me, and looked at my MRI.  You couldn't find any reason for the symptoms I was suffering from.  But you said I looked 'anxious'.  True enough.  But anxiety was NOT the cause of my symptoms.

When I asked if you could refer me to an infectious disease specialist, you said there was no reason for that, as I didn't have a high fever.

When I asked if this could be the result of Lyme disease, you quickly dismissed that idea.  "No, Lyme disease wouldn't cause this."

Well, in fact, it can.  Hundreds, or perhaps thousands, of people have reported symptoms just like mine, and they have tested positive for Lyme disease.

I just want you to know that I finally did receive a diagnosis and positive blood test for Lyme disease.  I know that doctors have very little knowledge of the symptoms of late-stage Lyme disease, but if you had known more, I might have been spared months of suffering.  Perhaps this information will help others who come to you with unusual symptoms.

Sincerely,
Paula

Dear Endocrinologist,

I'm sure you don't remember me.  I came to see you in March of 2011.

I was referred to you because I was having strange vibrations in my head and body, and the head vibrations prevented me from falling asleep.

You were very kind, and you spent a lot of time with me.  You said that there was nothing endocrine-related that would cause symptoms like this.  But you told me to keep searching and to leave no stone unturned.  And that is what I did.  Thank you for that advice.

I just want you to know that I finally did receive a diagnosis and positive blood test for Lyme disease.  I know that doctors have very little knowledge of the symptoms of late-stage Lyme disease, but if you had known more, I might have been spared months of suffering.  Perhaps this information will help others who come to you with unusual symptoms.

Sincerely yours,
Paula

Dear Infectious Disease Specialist,

I'm sure you don't remember me.  I had an appointment with you in May of 2011.

I was referred to you because I had a whole host of strange symptoms which I presented to you in a typed document.  I had also received a positive Lyme blood test from Igenex.  I was so hopeful that I would find some answers at this appointment and finally receive treatment.

You spent a lot of time with me, listened patiently, and spoke thoughtfully.  However, you did not believe I had Lyme disease despite my positive blood test.  You felt that it was improbable, and said that our medical system works on probability.  You believed that it was more likely that my symptoms were caused by anxiety.  I'm still not sure how tender glands and low-grade fevers factor into anxiety.  I'm also concerned about the 'probability factor' in diagnosing someone.  This would overlook quite a number of people who have rare conditions, would it not?  I'd rather be treated as an individual, not a statistic.

I told you about my risk of exposure, that I had been walking through the woods of a certain provincial park where we had actually received literature on the way in regarding ticks and Lyme disease.  Your response was, "So?  I have a cottage next to that park."  Am I correct in my understanding that since you have never come into contact with ticks at your cottage, it therefore means that I could not have come into contact with any at the adjacent park?  I'm not following the logic.

You are very skeptical of U.S. for-profit labs, believing them to be some kind of scam.  You said that they make their tests more sensitive.  Isn't sensitive actually better?  Have you researched this lab?  Do you know their track record?  Do you know the results of government inspections on the lab?  If you looked into it, I'm sure you would be satisfied with their reputation.

I had several positive bands on my Western Blot, and one particular band (31) which is highly specific for the Borrelia bacteria, had a triple positive reaction (+++).  Surely you know that bands 31 and 34 were removed from other standard Western Blots because the Lyme vaccine was based on them.  And here I was, with a triple positive for band 31 - a very strong reaction.  And I've never had a Lyme vaccine.  But you just ignored all of this valuable information.

You were prepared, however, to offer me a 3-week prescription for doxycycline to 'ease my mind'.  I thank you for that, truly!  Not that 3 weeks would have cured my illness, but it confirmed my self-diagnosis when I had a herxheimer reaction on day 3 of the treatment.  The herx lasted for 6 days.  It was another piece of evidence to present to the two U.S. Lyme-literate doctors I saw a month later.  So thank you.

You were really very kind to me, but still, I have to hold you to a higher level of accountability because this is your specialty, after all.  And yet I was left to suffer.

I just want you to know that I began treatment for Lyme disease in June 2011, and continue on antibiotic therapy 15 months later.  Almost all of my symptoms have disappeared.  I know that doctors have very little knowledge of the symptoms of late-stage Lyme disease, but if you had known more, I might have been spared months of suffering.  Perhaps this information will help others who come to you with unusual symptoms and a positive Igenex blood test. 

Sincerely yours,
Paula

Lyme treatment: clinical evidence vs. scientific data

I'm providing a link to an excellent article written by Mary Beth Pfeiffer of The Poughkeepsie Journal.  She summarizes the issue so well, and refers to the studies that physicians in both camps (ILADS vs. IDSA) use to prove their case.

Lyme Disease:  Antibiotics fuel debate

Sorry, I still have to side with ILADS and the clinical evidence camp!  How can I not?  I have been through it personally, and know that the long-term antibiotics have helped to improve my symptoms.  Study or no study......one CANNOT deny the clinical evidence of thousands and thousands of patients who have received long-term antibiotic treatment from Lyme-literate physicians.

To the IDSA - Please take your head out of the sand!  Set aside your biases for just a moment to consider what so many people are telling you.

To ILADS - We know that there is an abundance of clinical evidence, and we know that the antibiotics work.  But we need to push for scientific studies and more research.  Once this is all proven 'scientifically', the problem will be resolved.  Please continue to push for this.  This is the only way that both sides will be brought together.  I truly admire your efforts, your persistance despite opposition, and your intelligence.  Thank you so very much.