Topic: undiagnosed , misdiagnosed - did you tell old dr they messed up?
LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
When Iwas first dx about a year ago, it had been a 16+ year fight to find what was wrong with me.
I was very gung ho at that point to write a letter to all the 40+ Dr.s that misdiagnosed me, or gave me the Elisa over and over, or those dr.s that just laughed at me.
I kind of forgot over the year that I wanted to do this as I went through so much with my treatments- making me unable to do it or much think about doing it.
Now I feel better. I feel a little more in control of my brain and I am thinking that it may be time to do the letter.
have any of you written your past ignorant drs? and if you did, did anything come of it?
how did you word it?
thanks
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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posted
LisaK if I may ask where are you located and who was your lymes doctor? Please PM me. I think writing the letters is a wonderful idea - I never thought about it !!!
Posts: 21 | From Maryland | Registered: Mar 2014
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posted
I wrote 6 letters when I found out I had Lyme. I was very nice and just implored them to be sure to look for that diagnosis in their patients.
My urologist (I had suffered greatly from IC) was the only one who replied and he wished me well. Maybe he felt that he was not in danger of being sued since he was not my primary care Dr or he was just being kind. It was a very compassionate letter and I appreciated it.
My point with all of them was for them to please test for it. I don't think anyone had even considered it since my tick bites were MANY years earlier.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
I wrote to the doctor who might have saved me from years of illness, but didn't and was very dismissive. Didn't go into treatments, testing, and said I was not looking to sue, just educate. And did not give the name of my lyme doc.
In other words, it is a good idea provided you don't give them ammunition against your lyme doctor or any way to argue with you about test results. The treatment outcome speaks for itself and that should be said....you are now better. Wouldn't hurt to mention the symptoms you had when sickest.
Shorter letters better than longer ones, no matter how passionate you feel about it.
And you could refer the doctors to the ILADS website for more information.
Posts: 2888 | From USA | Registered: Mar 2004
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posted
I did the letter about a year ago ,writing to all the drs i have seen. Along with an ilads brochure .
It was short and simple basicly I was a patient of yours I have been successfully treated for lyme and bartonelia , please take the time to read ilads brochure .
Thank you for your time and understanding.
I don't know what became of it , but it is a start.
Posts: 238 | From Where | Registered: Aug 2012
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Nope. Wtg until I am well enough to do so.
I did go back to the orignal doctor in my home town once I was dx....
He still refused to believe I had lyme disease and would not work with my lyme doc.
I had to travel an hour and a half..well..have someone drive me an hour and a half to get a doctor who would work with my lyme doc.
Same with pharmacy's..werid...trried all 3 in my home town and was told either that the insurance I had would not provide what was needed, or that due to the cost of the product I would need to come every day to get a pill and pay the co pay each time
Went out of town an hour and ahalf and the pharmacy filled the products without a hitch.
weird, freaky but true.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
Dont waste your time trying to notify your previous doctors.
They don't care, and it won't change the way they diagnose their patients.
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I've taken in articles in the past, only to find them buried inside my medical file, the doctors do not take them . . . they are part of patient history. More, they think, to our mindset than to their continued learning (sigh!).
No, do not send letters, I strongly advise you. Not as yourself (or a fake name), anyway. Other ways to approach this.
But you have to be clear on your reason. Likely it's more about vindication than education and, when so, we really need to put on the brakes. Certainly, I wish all the doctors who blocked me were able to understand and acknowledge but it's not going to happen . . . I'm certainly not well enough to speak or write a would be required.
These letters will go in your file. You will be flagged as a "difficult patient" (if not already) and a nutcase and also flagged as likely to sue.
I know that's not correct but it's what will happen.
I advise against writing letters directly from yourself to a doctor in this matter.
Still, if you feel well enough, get involved with your state and local lyme support groups that are ILADS minded. Help them with patient and professional education and awareness. That's the best way to help, IMO.
You could send lyme educational materials to the doctors' offices . . . even be sure that all the staff and each doctor has their own pamphlet, etc.
And to their professional organizations. I think it's best to have this sort of thing guided by the state, regional or local support group leaders so it's a coordinated, professional effort and those who are on the front lines have some kind of speakers' bureau training even if handing out brochures.
Do not make yourself a target. Your medical file is yours forever. Nothing is deleted. Try to keep it from being ammunition against you at anytime in the future.
And this can be in a computer file - many insurance groups, medical practices are going to computer files and it may not matter if you are at a different location.
Even if you no longer see some of the doctors, you cannot trust that anything you send them will not show up in your file. It's all shared now. Nothing slips by. And it never makes the patient look good when they try to "educate" a doctor.
Take another avenue, though, with organized lyme support & education organizations. -
[ 07-15-2014, 01:52 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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droid1226
Frequent Contributor (1K+ posts)
Member # 34930
posted
I did personally and got locked up 13 days for it. Dumb move on my part. I was so mad and so sick. I confronted my Dr. I highly advise against that.
In my case, my medical file is destroyed with negative remarks and claims of "lyme", drug use, violent behavior, etc(all untrue).....lol. Idc. But it doesn't travel with me from hospital to hospital and has had no negative impact on me for follow ups, specialists, and procedures.
I don't think letters will make a difference. Writing an honest review on vitals.com or ratemd.com might have way more influence.
Now go into an appointment without insurance....then you'll have a problem.
GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
No, I would be writing for days...
32 docs. 16 specialists.
It is very much still a 'loony' disease in BC.
It would be like drawing a bullseye on my forehead if I ever needed emergency help.
It takes too much energy and would end up in the garbage bins anyways.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
wow, so many mixed reviews.
I would never sign my real name.
One past dr I did speak to on the phone (anonymous) as I thought I was calling her office in off hours. turns out it was her cell and she moved states away and has a totally different "wellness " program instead of the GYNO practice she had when I saw her.
She caught me off guard and I was having a terrible day. I layed in on her and told her that her oversight left me stranded and gave a very brief- like 6 second- talk on lyme, haha
I was totally taken by surprise so it threw me off. She actually said she understood and now realizes about lyme. I am not sure I believe her.
she was always full of herself.
when I saw her last I was crying and irrational from lyme and all the gynos were telling my I was in perimenopause. WRONG
she actually told me to go home and have $ex with my husband to feel better. I wanted to punch her lights out
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
when I first found out I had lyme & co. I was so mad at all those ignorant or pompous drs. I wanted to stone them with words so they would feel guilty and cry and change.
I knew that was never going to happen. but I thought I would really be writing to tell them so that they can help other people.
now that I am feeling somewhat better and not so uneven in the brain function, I feel I should write to instruct the ignorant!
out of 40+ drs there must be at least _one_ that would hear what I have to say and think about it! or at least an office person that opens the mail?
sigh
a girl can dream , right?
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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posted
I think communication with past doctors is key.
Mainstream is never going to change if they don't realize that they've seen Lyme patients.
I think letting a doc know which treatment protocols improved you and test results is helpful. I think using your identity is helpful so they can develop a clinical picture to compare to future patients with your symptoms. If you had 'lyme rage' or other frustration issues, I think it's important to explain that was part of your pathology, apologize, whatever... The neuropsyche aspect of Lyme has got to stop being a secret.
Droid - u got locked up for trying to do a post-mortem?! What the what? Like, crayons and white walls? or orange jumpsuits and soap-on-a-rope? Cray-cray.
LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
I think most drs are not open to change. They are too wrapped up in the system around my way here.
I just want to plant a seed and hope that one day a tree may grow. one day.....
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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steve1906
Frequent Contributor (1K+ posts)
Member # 16206
posted
Let it go LisaK, go on with your life and help others in need.
I'm sure you know in your heart you can't change the way doctors are trained, it's a waste of time and effect to write letters.
Enjoy your life and help others understand these diseases.
Steve
-------------------- Everything I say is just my opinion! Posts: 3529 | From Massachusetts Boston Area | Registered: Jul 2008
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posted
In my case, I was never going to see any of those doctors again. I had moved out of state. I had nothing to lose and satisfaction to gain.
I was very nice to them because they had all tried to help me. Ticks had never been asked about or discussed since by the time I was going downhill, it had been years and years since I had even seen a tick.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
I don't know. It kind of feels like closure to me. like if I do it, then I can let it go.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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linky123
Frequent Contributor (1K+ posts)
Member # 19974
posted
I wouldn't. With the climate around lyme being what it is, I think there's more to lose than to gain.
As hard as it is, I think it's best to just let it go.
-------------------- 'Come to me, all you who are weary and burdened, and I will give you rest.' Matthew 11:28 Posts: 2607 | From Hooterville | Registered: Apr 2009
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droid1226
Frequent Contributor (1K+ posts)
Member # 34930
posted
I find most the drs agree that it's a problem but are very skeptical of positive results and simply don't know much about it.
SickSci, the dr I confronted is actually my primary now and will do anything(except long term abx) to help me symptom wise. It's a very odd situation. But yes, in summer of 2011 I asked him for a lyme test, his assistant called me that afternoon and said I was negative.
I realized quickly that no W blot, culture, or Elisa could be done in that time. I lost it, I never hurt him or anything I don't really remember. I had gone 14 days without sleep and was a mess. They put me in a facility where I was literally tied down for a couple days then roomed with a guy that had just murdered his brother. Good times...
Anyway, we had group talk sessions once a day and everything I said during those were then put into my hospital records. So if I said I used marijuana and alcohol in college, they recorded it as if I was currently on them....it's a joke. I had an ombudsman talk to some of the dr's. but most of the stuff stuck to my record.
Anyway, I've seen my full file through the Cleveland Clinic. It's not good. lol. But it includes +'s for ehrlichia, bart, rmsf, lyme, and a few others. I've had many appointments and procedures done there since and nobody has brought it up. Except one Dr who actually said a practicing physician there was on leave because of it and it was getting more and more prevalent.
So IDK how much I believe that "blacklist problem patient lists" have that much influence. They might. Just not in my case.
posted
I was very angry also like droid I wanted to ummm , well anyway I took that anger and turned it around and sent out a simple basic letter anonymously along with an liads brochure. (About 100 )
That was about a year ago , I never wanted to follow up on it never going too see those drs again nor I did not care if they did not read or considered it.
Why get my hopes up.
But I do know my eye doctor is well aware of what goes on with the eyes and lyme.
He had seen me numerous times with all sorts of eye problems .
But after treatment for lyme and bartonelia , my eye problems disappeared .
I went back to him along with some brochures and was amazed on how my eyes were.
Even though he is an eye doctor he had become lyme literate.
As Kebbler posted above , I took another approach and managed to get someone very high up in the lyme disease community to do a presentation .
Have been planning that for a few years.
Then when I got better and was able to get back into the workforce. I ran it by the one organization I belong to and the corporation they sent me to work for.
Along with a lot of LDA brochures to both party's
Both party's say they are interested , but like lyme it's a slow tedious process .
One day it will come around.
There is so much more that can be done to promote awareness or educate .
And please sign the petitions and also help pass the ny state bill.
Posts: 238 | From Where | Registered: Aug 2012
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posted
I communicated with as many of my former medical practitioners as I could find, via walk-ins, phoning, emails and letter packets.
I found results to be like a Bell curve - a few really cared that I told them because they liked me and had wanted to help. A few were hostile. The rest fell somewhere between the two ends - many were silent. You'll do the best with those who treated you somewhat like a friend.
I asked to have my records changed to reflect the new diagnosis.
I do recommend the exercise, however, because first of all, it is our right to speak up and inform them about an accurate diagnosis, and second, we might just be educating some folks...
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
why don't you try this....it helps me to let things go.
Write your letters, get it all out, every thought, every emotion. Say it all. Then go outside, or in a fire place, burn them. Watch them disappear into smoke. It is very cathartic.
I find that writing it down helps to get it out. Burning it sets it free and also gives you a little satisfaction
Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
If you're going to write to them, I would cc your congresspeople and state governor too.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
that has never helped me jenny- except with some heated love/hate letters to an old boyfriend when I was in my 20s.
I respect what everyone is saying that said dont' do it because ______. but I would never put my name. never.
and I *really* want to send it to those that gave me the approximately 10 or so Elisa tests that were all neg and then told me "no lyme here".
they just don't know what they are doing. they are the ones that seemed to care. and the others that had no clue need a wake up call.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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steve1906
Frequent Contributor (1K+ posts)
Member # 16206
posted
It sounds like you really need to follow through with the letters.
If your not going to sign the letters, and they can't trace it back to you, then I see no harm in sending them.
Who knows, maybe one of the doc's will have an open mind, that would be great for the next Lyme patient.
Steve
-------------------- Everything I say is just my opinion! Posts: 3529 | From Massachusetts Boston Area | Registered: Jul 2008
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posted
After I got diagnosed with Lyme, I sent letters to all my doctors who saw me and diagnosed me with other things.
I sent them an informative letter only with no hint of anger or blame.
One of my doctors wrote back to me saying how sorry he was that I was ill, and I was very touched by that. The rest I did not hear from.
I never however, wrote to the primary care physician who was the one who refused me treatment for all my tick bites for years. Just thinking of her brings up too much emotion for me as she literally denied me antibiotic treatment over and over for multiple tick bites.
However, I do tell people who she is so that they can avoid her and not end up in my situation.
Posts: 187 | From Connecticut | Registered: Jun 2013
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posted
I did. I called the doc's office, asked for him and told him after 16 years of misdiagnosis, from Chronic Fatigue to Fibro to potential bone cancer, to LGD, MS tests possibilities to being put on meds for depression......
When I told him I finally got a real diagnosis, HE SCREAMED AT ME INTO THE PHONE THAT I DID NOT HAVE LYME DISEASE!!!
I couldn't believe it, and when I told my husband in tears, I had to do everything possible to stop him from going and tearing that duck's head off.
Fast forward, 3 years. I heard f/local acquaintance that after years of mis-diagnosing patients.....he now treats for 30 days w/abx.
Never an apology.....or admission of guilt.
I wish I could sue him but we know how that goes, right?
Posts: 19 | From PA | Registered: May 2014
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posted
Just about 2 weeks ago, I had the opportunity to chat with the nurse practitioner who diagnosed my daughter with "hypermobility." Though my daughter is slightly hypermobile, finding this minor problem gave the doctor an excuse to stop looking any further... which means they dismissed us when I said she could no longer handle regular school, and they never found the neuropathy (which should have been clues that there was something bigger going on).
We talked for a long time, and she took notes and said she was definitely going to discuss it with the rheumatologist. She also said she was grateful that I talked to her because it would change how she practices at the rheumatology clinic.
Actually, that's the same response I got from daughter's physical therapist and from the head of the pediatric physical therapy associated with our hospital system. That it would change how they practice.
When I told her primary care doc, who I feel did his best sending us to specialists, his response was that he wasn't convinced she actually has lyme and babesia. Interesting since even the CDC believes she does. Oh well.
Posts: 48 | From Orlando, FL | Registered: Apr 2014
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
"she actually told me to go home and have $ex with my husband to feel better. I wanted to punch her lights out"
Argh. This kind of advice makes me want to punch that docs lights out also. Unbelievable. I hope that doc gives the same advice to herself. geesh.
That's along the same line as the doc who told me I needed to play MORE soccer....to help my sore and swollen joints. And the fact that I stopped playing soccer (from joint pain, chest pain and fainting), was reason enough to diagnose me with a mood disorder because I stopped doing something I had previously enjoyed...
If you truly need it for closure, then do what you need to do.
In BC, it is too risky still.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
greta, yes, it is amazing to me that drs can be such sheep!
this is why I LOVE the scene from the movie The Wolfman with Anthony Hopkins and Benicio De Toro.
the scene where he is in the mental hospital and they have been trying to help him by torture and on the night of a full moon decide to have a little observation class of his delusions..... Mwahahahahahaaa...... PAYBACK!!!!! to all those drs that get it wrong! haha
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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