Bacterial Disease, Not A Crayon

This does not cause Lyme Disease:

Lyme is not a big bug that you can see.

That tick is one delivery agent of this:

It is a spirochetal bacterium called Borrelia Burgdorferi. It can only be seen under a microscope. It invades tissues throughout the body.

I wish we would stop using the tick image as almost the logo or branding for Lyme Disease.  Certainly, knowing about ticks is key to prevention. But it is not the tick which we fight when we fight for our lives. It is a bacteria. A very serious bacterial disease. I think people lose sight of that when we associate so much of the discussion of Lyme with the images of ticks.

I'm also a little dismayed by the trend of late to associate diseases with cute colors. I know it seems natural since this disease was originally identified in Lyme, CT to use the lime color for PR and awareness. But there's is something about the whole idea of this which diminishes the gravity of it all. Besides, if I had to pick a color for having lived with the ramifications of this disease, it would be grey. My life has gone grey. Not even the sharpness of black. A dull, neutral grey. A grey fog of cognitive issues, physical pains and the mystifying world of our broken medical system. I lie in wait to get my life back. That said, even grey is still associating a disease which can imperil your life with a crayon. Somehow, I don't think we're going to get the world to pay attention to how serious this is by being so cutesy.

I have seizures. Sometimes I can't see. Some days my fingers don't work or I can't walk. I am being driven insane by the sounds of the everyday world due to hyperacusis. I don't want people thinking about the cheery lime green color and feeling that you can deal with Lyme Disease by swiping ticks away.

I want people to realize that we need research. Lots of it. I want people to see the admitted opinions - not evidence-based science - of the conflict-ridden IDSA are being used as de facto law in such a way that thousands of people are suffering due to their self-interests. So, can we stop using a crayola color and macro-sized bug to represent this disease. How about a microscopic image or a photo of someone with Lyme Palsy? How about videos of shaking patients or people struggling to walk? Or interviews with folks who can't remember their names or how to get home from next door?

Its not a pretty scene, living with Lyme. Its not a cheery green color. Its not cute. Lets start making that clear, shall we?

Just my little rant for the day. Thanks for indulging.

Action Alert: Protect MA Physicians!

Please forward to everyone you know! While this action is needed from MA residents, supporters outside the state are urged to contact anyone they may know in MA to encourage their participation. Many thanks!

ACTION ALERT re: MASS. PHYSICIAN PROTECTION LEGISLATION

In Brief (detailed explanation available in next post):

The time has now come to contact Governor Deval Patrick! Language to protect physicians* who treat Lyme disease has been included in an outside section of the FY11 Budget.** Help us make the Governor aware of our (or a friend or family member’s) difficulties in finding appropriate treatment for Lyme disease in Massachusetts and our need for this legislation!

1. We must ALL urge Governor Patrick to sign the Budget, with this section intact. The IDSA has opposed this legislation at every turn and we fully expect that they will pressure Governor Patrick to veto this section of the Budget Bill. We have already been told that the Legislature will not have enough votes to overturn such a veto. Please send letters, fax, call or email Gov. Patrick (contact info below, including a sample and some tips for your letter) to let him know how important this is to so many of his constituents. Politicians DO take notice when they receive many letters and calls on the same topic – so help us get his attention!
   
   Governor Deval Patrick
   Massachusetts State House
   Office of the Governor
   Room 280 Boston, MA 02133
   Phone: 617.725.4005
               888.870.7770 (in state)
   Fax: 617.727.9725
   TTY: 617.727.3666
   
   Or use this link to email Gov. Patrick.
   
2. We have also been encouraged to contact the Commissioner of the Department of Public Health, John Auerbach (contact info below), as Governor Patrick is likely to seek his opinion on the matter. If you send a letter or fax to Gov. Patrick, you can just send a copy to Commissioner Auerbach as well. We need Commissioner Auerbach on our side.
   
   Commissioner John Auerbach
   Massachusetts Dept. of Public Health
   250 Washington Street
   Boston, MA 02108
   Telephone: (617) 624-6000
   TTY/TDD (617) 624-6001
   
   Or use this link to email Commissioner Auerbach.
   
3. It would also be helpful to send a copy of your letter to your own State Senator and State Representative (find yours at: http://www.mass.gov/legis/ ), so that they also are aware of the large number of us that want and need this legislation to pass. It is an election year, after all – and they can also urge the Governor to sign.
    
4. Trouble emailing or using the online form?
   Simply email a copy to lymebill@gmail.com 
   
   We will print and submit a hard copy of your letter to both  the Governor and Commissioner Auerbach. Again, you can send your letter to: lymebill@gmail.com

TIPS FOR YOUR LETTER TO THE GOVERNOR:
a) Please personalize your letter -- don’t just copy the sample and send it, if at all possible! Form letters are not taken as seriously as a personal letter. However, a form letter MUCH better than nothing, if that’s all you can manage right now.

b) Keep your letter brief and to the point—no more than one page! As much as we’d like them to, they won’t read all the way through our long, very sad and usually infuriating stories.

c) If you are writing about yourself, and particularly if you are writing about a child under 18, please consider the fact that this is not private correspondence. You do not need to mention your child’s name, your doctor’s name, or any specifics about your treatment.

d) Be sure to include your full name and address.

e) Good points to mention:

• If you (or a family member or friend) were unable to find a doctor in Massachusetts to diagnose or treat you appropriately for Lyme disease – and especially if any Massachusetts doctor indicated that they couldn’t or wouldn’t diagnose or treat you for Lyme disease because they were afraid of the consequences, or because they needed to follow the IDSA guidelines. Please don’t mention names.
  
• If you went to a physician out of state because of this.
  
• If long-term antibiotics helped you.
  
• If the delay in treatment caused additional health problems.
  
• It’s also good to mention the financial toll this has taken on you and your family overall.
  
• Your desire to be able to choose a treatment which is alternative to those prescribed in the IDSA guidelines.

SAMPLE LETTER TO GOVERNOR:

The Honorable Deval Patrick
Governor of Massachusetts
Massachusetts State House
Room 280
Boston, MA 02133

RE: Outside section of the Conference Committee Report of the FY11 Budget pertaining to long-term treatment of Lyme disease

Dear Governor Patrick:

I want to urge you to sign the FY11 Budget with the section pertaining to long-term treatment of Lyme disease intact. This is extremely important legislation for my family and our state.

(INSERT YOUR SHORT STORY HERE)

This Legislation will allow physicians to clinically diagnose a patient with Lyme disease and will enable very ill MA residents to choose treatment options that best meet their needs, while the medical community works to find better consensus on LD treatment guidelines. Please sign it into law and allow the citizens of Massachusetts a choice in the treatment of Lyme disease.

Sincerely,
Jane Doe
435 Maple Street
Anytown, MA 00022

If you would like a Microsoft Word template for this letter to be emailed to you, send an email to lymebill@gmail.com with the word ‘TEMPLATE’ in the subject field.