Navigating Lyme Disease

[lyme_mom]

When my son was diagnosed with Lyme Disease over two years ago I knew we had a long road ahead of us. I was not prepared, however, for the ignorance about and at times contempt for Lyme Disease that we would face from doctors along the way. My son's case was clear cut. He passed all lyme tests with flying colors because he had been misdiagnosed for at least a year and he was really sick by the time he got Bells Palsy. I got some great advice the week he was diagnosed leading us to seek an opinion from a lyme literate doctor immediately. I also I read Cure Unknown by Pamela Weintraub within two weeks of his diagnosis and therefore had some idea about the war going on between doctors regarding Lyme Disease. It was still shocking when my own pediatrician who I believed was a good doctor up until this point, took my son's illness lightly, didn't return my calls and, I later learned, prescribed the wrong dose and type of antibiotics for neurological lyme (which Bells Palsy indicates). This pediatrician even joked that Lyme Disease was the "new Gulf War Illness" as if he did not believe it existed. Then we had to deal with our local hospital that refused to fill my lyme doctor's order for a Picc line without first reinvestigating whether my son really had Lyme through a risky and unnecessary spinal tap. My son's Elisa score was 4 times the positive number and his western blot was positive as well. In fact, the emergency room doctor who diagnosed my son with Lyme Disease told us that in almost all cases Bells Palsy in a child is caused by Lyme Disease so there was no reason to doubt the diagnosis. Then there was the neurologist at Children's who told me and my then ten year old son that his facial palsy would never go away and chided us for going to a lyme literate doctor. He was downright hostile right in front of my sick child! It was very stressful and the last thing we needed at that point. We never went back. Why would we? He offered us nothing and the lyme doctors told us he would get better and the palsy would go away. They were right and he was wrong fortunately. I am glad there is now a board where parents can discuss their children's lyme treatment. I hope that parents whose children were treated and cured of Lyme Disease will also join the board to share their stories and advice. I am sure some day those doctors who criticize the lyme doctors will have a family member sick with Lyme and they will need their help b/c 3 weeks of antibiotics is almost never enough. Lyme is such an epidemic that I worry that there will be so many sick kids in the future unless something is done to prevent Lyme Disease and doctors start treating Lyme with the seriousness it deserves. My son's palsy is gone and he is almost completely symptom free thanks to several courageous lyme specialists. Until the lyme wars are over parents really need to help each other navigate the "lymelands" as Pamela Weintraub calls them.

[justinekno]

There's different antibiotics for neuro Lyme?

 

It was still shocking when my own pediatrician who I believed was a good doctor up until this point, took my son's illness lightly, didn't return my calls and, I later learned, prescribed the wrong dose and type of antibiotics for neurological lyme (which Bells Palsy indicates).

[lyme_mom]

There's different antibiotics for neuro Lyme?

 

It was still shocking when my own pediatrician who I believed was a good doctor up until this point, took my son's illness lightly, didn't return my calls and, I later learned, prescribed the wrong dose and type of antibiotics for neurological lyme (which Bells Palsy indicates).

If a patient has Bells Palsy apparently you give the patient two antibiotics to keep it from spreading (in my son's case he was put on doxycyclene at half the right dose and they did not prescribe ceftin which helps halt the lyme.) The lyme doctor put him on these medications immediately and Iater got a new pediatrician (not ilads) who told me that he might not have needed a picc line if he had been given ceftin AND the right dose of doxy right away.

[mama2alex]

Lyme Mom,

 

Thanks so much for kicking off the Lyme forum with the first post, and telling a bit of your story. You've always been such a great resource on the PANDAS forum - and now I'm glad we have you in on a dedicated discussion of Lyme. I hope you'll continue to contribute on both forums for a long time to come. I know your posts have helped a lot of parents, myself included.

[NewBeginnings]

Sadly, your story is too familiar.......

 

So sad.......I know exactly what you are saying. Last year at my annual exam, my Dr asked what prescriptions I was on and since it was early in our diagnosis, I was on Doxy. When he asked me what I was taking it for and I told him Lyme, he laughed at me, patted my on my hand and said "OK" as he was walking out!!!

 

Even with proof of blood work for both of us, it's like that's still not enough. Had we had ANYTHING other than Lyme, we would get respect and treatment. You show a positive Lyme test and you get laughed at.

[lyme_mom]

Sadly, your story is too familiar.......

 

So sad.......I know exactly what you are saying. Last year at my annual exam, my Dr asked what prescriptions I was on and since it was early in our diagnosis, I was on Doxy. When he asked me what I was taking it for and I told him Lyme, he laughed at me, patted my on my hand and said "OK" as he was walking out!!!

 

Even with proof of blood work for both of us, it's like that's still not enough. Had we had ANYTHING other than Lyme, we would get respect and treatment. You show a positive Lyme test and you get laughed at.

Its pretty sad that so many doctors have this attitude. Wait until someone they care about gets Lyme (and it will happen b/c this disease is out of control) and they will be making a bee line for a lyme doctor.