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Thoughts about all the befuddled docs?

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Posted 2/28/2014 9:19 PM (GMT 0)
Have you ever thought about going back (or sending letters) to all the docs you've seen in your journey toward diagnosing Lyme & TBDs?

I mean, would it be enlightening for my PT who was trying to help my sore neck learn that the mysterious pain was caused by an actual disease?

My Dad thinks I should tell my dermatologist to help pay my current med bills because he saw the bullseye rash & said, "We don't have Lyme in NC. If you want to pursue treatment, you should see your GP."

Has anyone done this?
Posted 2/28/2014 11:37 PM (GMT 0)
Have heard about a lot of people seeking legal assistance because of being denied appropriate tx.
Posted 3/1/2014 12:22 AM (GMT 0)
Honestly, I don't think enough docs would care or take notice - even if their office was flooded with letters/emails. A person would have to almost certainly bring a lawsuit against the doc, and they have many ways to squiggle out of being sued for a disease that they don't recognize.

Although if it would work as a sort of therapy for anger - why not? LOL!
Posted 3/1/2014 1:37 AM (GMT 0)
I personally think that we could be more effective if we rated these doctors at online websites that allow you to rate a doctor that has treated you. You could then send a copy of the review to the doctor.

I read a recent article that said that more and more people check online (specially younger people with insurance) before visiting a doctor. I think that if we wrote a truthful and accurate review of how the doctor treated us and how they misdiagnosed us, the doctors would take us more seriously or go out of business.

We could also use the same tool to praise those doctors who are good at what they do and that go above and beyond to help us get well.
Posted 3/1/2014 1:52 AM (GMT 0)
Great idea.
Posted 3/1/2014 1:57 AM (GMT 0)
I wrote a letter to a clueless ID doctor, demanding a refund. Next step is small claims court. After that comes a complaint to medical board. Even though they probably wont sanction her, they have to investigate which will be a real hassle. If she wants to fight, it's going to cost her many times the $$$ she charged me. I have nothing to lose and plenty of time to spend on this. Ironically, it seems that she has filed complaints against several LLMDs. I guess what goes around comes around.
Posted 3/1/2014 2:01 AM (GMT 0)
Yes - and I am doing this with more than just a letter. I am overwhelmed with the lack of awareness of Lyme Disease and how many have ended up with Chronic Lyme. I am battling it now, and it's a early battle so I stand a chance of beating it 100%, but I will not let my experience go unnoticed. It is way too disturbing. I don't know exactly what I am going to do yet, but when I am ready - I am going to rock the boat, just a little. =)
Posted 3/1/2014 2:03 AM (GMT 0)
Ironically, it seems that she has filed complaints against several LLMDs. I guess what goes around comes around.

You go Dr. And please let us now how it proceeds.

Post Edited (BarnGurl) : 2/28/2014 7:06:03 PM (GMT-7)

Posted 3/1/2014 2:06 AM (GMT 0)
And btw, Welcome Aboard.
Posted 3/1/2014 2:13 AM (GMT 0)
"Befuddled Docs" changed title "Docs Attempting to Baffle Us With BS"

Post Edited (BarnGurl) : 2/28/2014 7:22:01 PM (GMT-7)

Posted 3/1/2014 3:35 AM (GMT 0)
Ya. It is baffling how many doctors think lyme can't be chronic or people automatically treat it if they took antibiotics what the hell.

Agreed also online reviews surely have potential to make an impact. I know now if I see a doctor with a lot of bad reviews I avoid them and now I leave honest reviews about doctors whether good or bad.

It would be interesting if online reviews cam effect doctors practices. It would seem fair pretty much. If a doctor is missing things like lyme and coinfections they deserve to be called out, if they are a helpful doctor than than that is fair as well and it can benefit them.
Posted 3/1/2014 4:05 AM (GMT 0)
There are good ones and bad. I was seeing a bad one for 1.5 years while I struggled in mystery and pain.... he wrote it off as anxiety. Found one that actually cares and am thankful.
Only he is not an llmd...but can probably lead me in the right direction.
Posted 3/1/2014 4:13 AM (GMT 0)
I have very seriously thought about writing these letters. My first symptoms (after a flu-like illness) 9 years ago were: a sudden onset of floaters, flashing light, photophobia, and panic attacks. I saw four eye doctors and not one ever considered lyme. Finding out that was a common symptom just totally rocks my world.

I want to write the letter in case one of them sees someone with the same symptom. It may save someone 9 years of suffering!
Posted 3/1/2014 4:21 AM (GMT 0)
I guess yelling at them wouldn't work!

Margaret
Posted 3/1/2014 4:36 AM (GMT 0)
It might feel good to yell though ;)
Posted 3/1/2014 10:52 PM (GMT 0)
You know Lymie Lou, I do not think they understand it. Some doctors specialize in a specific area and unless this disease has effected someone they know like a loved one directly they usually do not know about it.
Posted 3/2/2014 12:31 AM (GMT 0)
Boy, you said it BarnGurl. If it doesn't fit into their specialty, they just ignore it. The gastroenterologist just smiled at us when I talked about my son's chronic floaters. The hematologist said my son at age 10 was pre-adolescent when he had a rash (hello?!), and my GP thought the lymphocytoma on his ear I pointed out at our very first doctor visit for all of this was an insect bite. The GP is the only one I don't hold responsible--how is she supposed to know everything? But the others are inexcusable.
Posted 3/2/2014 12:52 AM (GMT 0)
MamaV- I was having the exact same thought today. I was even visualizing what my letter would say.

I like the idea of rating the doctors online. I can still hear each and every specialist, as I sat in their offices:

"There is nothing physically wrong with you",

"Are you sure you aren't just...tired?",

"I think you would benefit from a massage",

"You're weird. How's that for a diagnosis?"
Posted 3/2/2014 1:34 AM (GMT 0)
ksgirl I diagnosed my nine year old son after I went neuro. Thank God I got it because if I hadnt I wouldnt have been able to detect it in him.

I told my husband and my mother my son had Lyme and they said I was nuts. They said I thought everything was Lyme etc. In the meantime he was having screaming fits, headaches and chronic sinus problems. My LLMD believed me and tested him. We lived on a farm and a horse here almost died from tick borne illness. My son did have Lyme and responded to abx immediately.
Posted 3/2/2014 1:39 AM (GMT 0)
I had an ENT specialist tell me, "The symptoms you're describing in your neck cannot physically happen. There are psychosomatic symptoms sometimes. Let's send you to a neurologist." That was the doc who got a letter and a request to withdraw charges. She preferred to dive into my emotional state which, after suggesting that I was depressed and completely misunderstanding my pain, I WAS somewhat saddened and slightly angry. Ugh.

I'd just love to tell doctors that we make ourselves vulnerable when we see a doc. We make ourselves face our troubles that no one else has been able to address when we bring our ailments to a doc. It can definitely be an emotional ride if the doc isn't compassionate.
Posted 3/4/2014 11:38 AM (GMT 0)
I am friends with many physicians. I don't even discuss my condition with them any more because their belief is that it doesn't exist. I am much more knowledgeable about it than they are and getting them to help me will not happen. It's the way they are trained. Whenever I correct one of them on something, it isn't taken very well so I just don't say anything.
Posted 3/4/2014 12:50 PM (GMT 0)
The biggest issue with me is - nobody knows how unreliable the regular quest/labcorp Lyme disease tests are - this is SO IMPORTANT!!
Posted 3/4/2014 4:27 PM (GMT 0)
I'm wondering if I should go after the doc that put my gall bladder in a jar!!! Because that didn't help a thing. I actually started feeling worse after that.
Posted 3/4/2014 7:02 PM (GMT 0)
I told several of our doctors about our diagnoses, but they were all naturopaths. I wasn't angry with them at all and most of them did help in some way, but just didn't know much about Lyme disease. They were all relieved to hear that we found out what our daughter had and never disagreed with the diagnoses. If we had gone to MDs, it would've been a different story.
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