Thursday, November 12, 2009

Should I Stay or Should I Go

There's a vibrant and active community of people affected by Lyme disease. Of course the internet is the best way to interact with these folks. Lynette and I both belong to a couple of social networks targeted to people who's lives have been touched by this disease.

These social networks are a great source of support and information. Although each member has a different story to tell, you start to see that you have things in common with many of them. They have similar symptoms. They are on the same medicines. They see the same doctors.

No doubt there are a lot of stories of dispair to be witnessed. There are patients who have been sick for years but just recently diagnosed. There are people who are sick and have lost their job and their income and are left alone and sick to fend for themselves. There are the typical stories of denial by the medical community. There are patients who have been aggressively treated and have made no progress.  

Jordan Fischer Smith, the forest ranger who is one of the Lyme sufferers who's illness is chronicled in the Lyme documetary Under Our Skin said on camera that he did not start to feel well until his 3rd year of treatment. Noted Lyme practitioner Joseph Burrascano endured treatment of his Lyme disease that lasted for more than 3 years. 

The worst of Lynette's symptoms came on after her sympathetic OB-Gyn wrote her a prescription for doxycycline.  Lynette's reaction to this medicine was our confirmation that she was suffering from Lyme disease.  Lynette was forced to use a walker and wheel chair to get around due to the herx that she suffered from this treatment.  Lynette's formal treatment for her Lyme disease started in the middle of February.  Although progress seemed slow to us by the beginning of May Lynette was walking unassisted. 

It is a tendency among the members of the Lyme social networks to leave these communities when the affects of their disease diminish.  As Lynette starts to return to a normal life, I find myself feeling like I too could draw away from this community.  But I do still want to be involved.  There is a lot of progress to be made in diagnosing Lyme disease, in getting proper and adequate treatment, and in recognition of how serious of a problem this illness is.  

Lynette and I are going to the wedding tomorrow night of one of our oldest daughter's childhood friends.  The other night Lynette was going through her wardrobe trying to find something to wear to the wedding that would be kind to her diminished stature.  She was also trying on shoes that she could wear and not fall over herself.  Lynette says she still has to concentrate when walking in tricky shoes. 

Lynette has set a date for her return to work.  She hopes to return to part time duty on December 7th.  Her disability insurance prohibits her from returning to work full time.  I suppose they want to avoid a relapse.  She will be on part time for a couple of months before returning to full time.  This would put her on schedule to return to full time almost exactly one year after having to go on disability. 

As it stands now, it looks like we will be visiting Dr. J again in mid January.  After Lynette's phone consult with Dr. J last Monday, she is now on oral antibiotics on a M, W, F, two weeks on, two weeks off schedule.  Lynette had not had any antibiotics for 3 weeks following the completion of her IV therapy.  She did notice some minor herx reaction upon starting the orals.  She felt some effects in her hands and feet the first couple of days that she started back on the oral antibiotics.

Lynette is getting better and I intend to stick around.


  1. Thanks for a little hope. I just finished my second month oral cycle and have had a bad week off before starting my third cycle. My wife is out tonight with our friends and I am home because I do not feel well. I was just saying to her that I'm sick of taking pills, and don't feel like I'm getting better. It takes so so long and seems I never hear of anyone getting better. I too See Dr J. I travel from Chicago. I have done everything he has said to do. Your story has hit home for me tonight....Not a good night for me. Thanks.

  2. You go girl! I am so happy you are seeing improvement and feeling better!!! And I agree with Rick - you are inspirational.

  3. THANK YOU FOR CHOOSING TO STAY and keep us updated. It's SO important