Well. Does it really “suit” Lyme Disease? Or is it just that there is so much conflicting information, no real consensus, and therefore inadequately educated physicians? How many of us have been told we have:
2. Chronic Fatigue Syndrome
5. Rheumatoid Arthritis
8. ADD/ADHD or a Learning Disability (more likely in children)
9. Autism (more likely in children)
10. Early onset Alzheimer’s
I know for ME, myself …. this is the cycle of diagnoses I went through with
1. Hypothyroidism (he was RIGHT and I responded to treatment initially, but he was reluctant to pursue anything beyond this …. and I later found out Lyme CAUSED the thyroid issues)
2. MS (he kept saying he faxed paperwork to the neurologist – I never heard anything. This talk of MS went on for over a month)
3. some type of anemia ? A vitamin B deficiency …. he tested me for it and suggested I take B vitamins anyway
4. Chronic Fatigue ….. he made it clear there was no treatment for it. I cried and sobbed, unintelligibly begging him to listen to me and that I know my body ….. here he said:
Here I fired him.
1. He smiled politely, ordered some blood work and …. gave me a ‘script for Ativan. I know Ativan is an anxiety med. He didn’t SAY it was in my head, but I got the message.
Here I fired him.
Doctor 3 :
1. Treated me for RA even though my test was negative to rule out my possibly falsely testing negative
2. Lyme Disease. Test was negative, but I responded to treatment and she referred me out to a specialist. Specialist administered yet another test and it was very much positive.
This all spanned about a year. My symptoms progressed and got worse and worse. And it’s not just me. Sometimes I wonder …. I foolishly wonder …. what if they caught this quicker? Where would I be today? What kind of shape would I be in? Would I still be the athletic type who climbed mountains and rode my bike? Would I still be in the yard with my son from after dinner til dark every day instead of laying on the couch and trying to keep my eyes open? But it’s not just me. And my situation is not the worst – not by leaps and bounds.
In 1999 a teenage boy was awarded more than a million dollars in Canada. When he was healthy, his IQ was measured at 115. After becoming ill and not being diagnosed, he was tested twice. One result measured it to be an astounding 86 while another reflected an IQ of 103. Can you imagine?
Yeah. Maybe you can.
Here’s an article about him:
The Infectious Disease Society of America (IDSA) does not believe in the validity of Chronic Lyme Disease and they seem to set the bar for the CDC whose cues physicians tend to follow. IDSA tends to recognize Post Lyme Syndrome, but it seems to be in the context of psychosomatic conditions. (And how many of us have had friends that have said we’re just “used” to being sick? Or it’s “in” our “heads?”)
An article in the New England Medical Journal argues the validity of the term “chronic” Lyme Disease. (Let me make a quick distinction: “Chronic Lyme Disease” implies that there is an active infection in the body that will always be there. Dr. Feder refers to the continuation of symptoms after treatment “Post Lyme Syndrome.” He acknowledges that symptoms persist, refuting the claim that the infection itself continues to exist – and this follows with what IDSA maintains).
Dr. Feder is reputed to serve as a medical witness in malpractice suits – and he does not believe in “chronic lyme disease.” And … this article he has written pisses me off. What interested me the most was his section called “Treatment of Post Lyme Disease Symptoms.” He discusses placebo effects, etc. Well? It’s to be expected. Dr. Feder describes the difficulty in finding enough people with these symptoms! Is he serious? I know countless people! Granted, this was written in 2007 …. and people suffering and struggling are on the rise each year. BUT!!! He seems to have a tone. A tonnnnnne.
Here’s a link to the dryly worded article: http://www.nejm.org/doi/full/10.1056/NEJMra072023#t=article
The problem with malpractice suits in general is that the doctors can prove that they have conducted the “appropriate” tests (which often turn up with false negatives). A case in Connecticut involves a lady who attempted to sue a doctor who diagnosed her with MS. She obtained a second opinion from a neurologist who concurred with the original diagnosis of MS. The case cost the doctor $350,000 and he WON. But did he win? That’s a costly ‘win,’ isn’t it? She pursued him in court because after the second opinion, she found an internist who administered yet another test and she tested positive. Her health continued to deteriorate.
(See “Medical Misadventure”: http://journals.lww.com/neurotodayonline/Fulltext/2010/02180/The_Ordeal_of_Medical_Malpractice_Lawsuits__Even.12.aspx)
So is a malpractice suit worth pursuing? I would say no. From what I’ve read, it sounds like there are a lot of balls to be hit back in court and it will be a costly and exhausting experience that will result in nothing.
However …. if it happens enough then perhaps enough physicians will be shaken up and they might be less complacent.
Thinking back to my doctor #1….. I don’t want to take him to court and never did. But wow, I wish he would wake up. It’s exhausting to have Lyme Disease and to just …. BREATHE. Never mind having to advocate for more to be done on our behalf! I think the best thing to do is have a FRIEND you trust to go with you to an appointment and to help you get a different doctor or a second opinion or a third opinion – whatever it takes.