Friday, April 13, 2012

Heartbroken and angry

Some of you may have seen the Dr. Phil Show that aired where the second half was dealing with Lyme Disease.  While I am so happy that a mainstream outlet picked up at least some of the Lyme story, in the end, I just felt more heartbroken.  And angry.  Watch out, I get way more uppity in this post than in any of my other posts.  There's a time and place for anger I think.  And I guess it's here and now.

It breaks my heart that many sick people are dismissed, chastised, and ultimately left to suffer and die by their own doctors simply because a handful of doctors created this powerful rule that simply says these sick people are insane.

Sounds absolutely crazy, doesn’t it?  Deny care, say the patient is nuts.  That’s really it.  Any standard medical office you walk into will not be able to recognize Lyme Disease.  Furthermore, if you have received a 2-4 week course of antibiotics, you absolutely will be denied further care, even if you still suffer from symptoms.  All because there’s this all-powerful rule that almost all doctors follow when it comes to treating Lyme.  And it’s denying that chronic Lyme exists and it’s all in our heads.  How can it be denied that lengthy treatment works?  Look at all the people who have been in the battle for a long time and eventually get better vs. treating people for a really short amount of time, watching them still suffer, and then throw your hands up and proclaim ‘They’re cured!’….even when they are still dealing with all their symptoms!

There is a special place in hell for the IDSA guideline doctors who created these guidelines that hurt so many people, by denying them care.  These doctors have direct conflicts of interest with Lyme vaccine manufacturers, testing companies, and insurance companies and based their guidelines off of research conducted by themselves, while ignoring a huge body of research that completely contradicts their findings.  And surprise, surprise, the main result is that insurance companies can deny payment for care for chronic Lyme Disease.

How can this happen in America?  We all like to think that America is the best at everything – science, medicine, fairness, democracy.  How can we allow the rule-makers on medicine to get paid by companies who have a stake in the outcome of those rules?  It’s absolutely ridiculous.  Sure, it happens in Congress and with lots of public policy.  But how can we really allow this in medicine, medicine – where people suffer and die as a direct result?

How can you have positive lab test results for a disease and have a doctor tell you that you still don’t have that disease, or that the disease itself does not exist?!  How can it be that people are dying from a disease that ‘does not exist?’  Many people are dying, are wheelchair-bound, are blind, as a result of this completely preventable disease.  That’s the worst part.   If doctors knew how to recognize Lyme and knew how to treat it in its most early stages, people would not have to suffer.

How can we allow this?  How can we allow all this suffering?  So much suffering that doesn’t need to happen.  Wouldn’t need to happen if doctors acknowledged chronic Lyme exists and if they knew how to treat it.  How can we have doctors who swore an oath to do no harm not only leaving patients untreated, but blaming their sickness on them by saying it is the patient who has a psychological disorder?  How can we call it good medicine – to ignore your patients’ symptoms and tell them that they are psychotic?

I look forward to the dark day when enough people are sick and dying and disabled from Lyme that we say enough is enough.  Because clearly, it’s not enough people yet.  We haven’t waited until enough of us have amassed a loud enough voice. 

Disgusting.  Sad.  What a waste of human life, time, and suffering. 

That’s what gets me – you would never in a million years think you would have to quit school, work, and life as you know it all because you got a bug bite.  A stinkin’ bug bite.  I certainly never, ever thought this would happen to me, or that recovery would ever take this long (5 months and counting...and I'm a LUCKY one!  Most people get treatment for years!).

If you suspect you have Lyme Disease (or you do have Lyme Disease), it is absolutely imperative to be seen by a Lyme Literate Doctor, a doctor who acknowledges that chronic Lyme exists.  Otherwise, you will have the door slammed in your face and the book closed – on you.  Your doctor will not recognize the symptoms of Lyme and will not recognize that it even exists.  You’ll just be hitting yourself in the head with a hammer.  To find a Lyme Literate physician, go here:

To do something productive with your anger (hahaha), volunteer!  There are always Lyme Awareness events happening all around the country – walks (like Lace Up For Lyme in Milwaukee, Wisconsin on May 19, 2012!), talks, or write-in/call-in campaigns.  There's always a need for your energy to help in some way.  (And, there's probably a need in you to do something with that energy - might as well use it to help!)

“Victims of Lyme Disease are victimized twice by this illness.  First by the unending suffering attached with this illness and second by a healthcare system that ignores them, and sometimes doesn’t just ignore them, it mocks them, it ridicules them.”  
~ Dr. Jemsek, LLMD

I encourage you to watch this ‘Speak The Truth’ speech by Dr. Jemsek on youtube here:


  1. My thoughts exactly Hannah
    The dr on TV has totally out numbered. That has to be be why the idsa keeps what they do from public view. The audience was obviously one sided for us which goes to show that awareness does work. Once ppl see it first hand they see what really goes on behind the scenes. They see awareness and they think o it's like other disease s that are being treated but and ppl don't see that its not being treated properly and that's the most important msg to get out. Did u see the audiences reaction when they got the scoop what was going on? Their reaction would have been different just telling them. Evidence u see with ur own eyes def helps the skeptics see more clearly. Hope this show encouranges shows like dr oz to have shows reguardibg Lyme disease in the future or maybe even a Lyme diet show years to follow. Oz would love that one lol
    Ttys hannah and love ur blog.

  2. if you don't mind , I'll post it on my own blog; I live in France and we have exactly the same problems as in the US
    it's unbearable
    you can find many articles on my blog as well

    we have to live with this , but one day , we 'll WIN