I want to wear blue wings and soar

above the screaming

tantrums of today

I will take you with me

(hold you)

as we gaze down

upon whispery earth

at tiny beings

scuffling about

checking their clocks

and bank accounts

Ah,

the life of a bird

who does not love so much

that it hurts

 

 --LWK

 

 

 

Blog Index

 

You are my 'son' shine 

my little 'son' shine;

you make me happy

when skies are grey

You'll never know dear,

how much I love you

please don't take

my 'son' shine away

 

I wish I was fine

It’s like my brain

is doing a freakin’ crime....

 

From a rap by Coby, age 11

Wednesday
Jul062016

Another One Bites the Dust: Experience with an IDSA Doctor

"Are you saying my son does not have Lyme?" I questioned the doctor we had come to see about getting IV antibiotics for the Lyme and co-infections.

"Yes." The smug doctor stood up and said, "Have a nice day!"

I felt myself battling between frustration, aggravation, anger and tears. My 15 year old son stood up and looked at me, as if asking, "Are you going to say anything?"

I focused on my anger. "Well, this was a complete waste of time," I said. "You do realize that there are over 700 peer-reviewed studies on the existence of persistent Lyme? We came to you for help."

The doctor shrugged and walked out.

So went my first truly despicable experience with an IDSA doctor who is not only misinformed but unwilling to help in any way. As my son said after, "Guess we should only go to doctors recommended by other patients."

This even beat the pediatric neurologist who questioned the PANDAS and Lyme diagnosis a few years ago but wrote a script for an MRI and EEG anyway after my son's cheek froze for a couple of hours.

My own doctor had recommended this doctor's partner for my son. He thought that the recent round of IV antibiotics had been good for my son, but had stated that both he, an internist, and my son's doctor could only get a month's worth through insurance and that an ID doctor who was Lyme Literate could get through at least 3 months. But the doctor he referred us to is no longer taking new patients and it was thought that his partner was also Lyme literate. 

We drove an hour and a half to get there. This would have been worth it had the appointment been successful. We Lyme parents will do anything for our kids. As it was, we saw a brand new resident doctor first. I think it was his first day there. He clearly knew very little about Lyme as I had to explain a Herxheimer's reaction. But he seemed friendly. When he left the room, my son asked, "Mom, did you like him?" 

"That could be you someday," I told my boy, who wants to be a doctor. He shook his head and said, "No, that's too boring. Surgery is much more exciting." 

The doctor finally came in and made small talk. Fine, if the doctor would help, we could chat for a moment, although I really didn't want to hear that he has a healthy kid around the same age as my son. But, whatever. Establish common ground. 

After that, it didn't take long for him to reject the diagnosis of Lyme. When he took a look at the Igenex test and explained to the resident that "this is a test from California", my inner IDSA-meter went off. He then proceeded to explain to me about IgMs and IgGs. My internal eye roller went off. My son has been ill for years. I'm so beyond IgMs and IgGs at this point.

But when I told him I knew that IgMs and IgGs don't always convert with Lyme, he became agitated. "Who told you that?" he asked. "That's not true. Who told you that? All diseases do." 

As if I would throw any of our previous doctors under the bus. 

He never asked about co-infections. Or symptoms. Or the fact that a month plus of Rocephin greatly helped my son's joint pain. He just stated that once treated, Lyme is gone. He stood up and ended the appointment altogether. 

If he truly believed that once treated, Lyme is eradicated, then what is causing my son's symptoms now? Doesn't an ID doctor treat "Post-treatment Lyme"? He gave no suggestions for treatment.

The Igenex test we gave him is four years old. Is he really going to base my son's case on this one test? LLMDs will use clinical evidence. One of the practitioners with whom I recently spoke wondered if my son had been re-infected recently, which could have led to his "relapse." The doctor today dismissed everything without even finding out all the facts. And I thought that maybe they'd want to test him through Galaxy Labs. What galaxy am I living in?

Not once did this doctor ask anything about co-infections. Rocephin helped. But it treats Borrelia, not Bartonella and Babesia. We are having major difficulty treating the co-infections because my son doesn't detox well. 

Clearly, this doctor had no desire to investigate further or to even treat my son. He couldn't get us out of his office fast enough. I guess we're pretty lucky in that we do have knowledgeable Lyme-literate doctors and that this one doctor is not representative of all others where we live. Yet I wonder how many people must endure multiple visits to ignoramuses such as this. 

My tears came the moment we exited the office building. My son was pretty cool about it. "I didn't expect more," he said. And we drove home.

 

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