posted
Has anyone found any sense of satisfaction in letting all the incompetent doctors know when you finally got a lyme diagnosis?
I consider myself lucky that I've only been sick for a year and a half. But I've pleaded with 4 doctors to look into lyme for the last 8 months and was told the same thing by all 4 "neg lyme titer means no lyme". I finally found 1 (thanks to this support group) who has a clue what's going on with lyme!
I'd love to send a letter to each one of the doctors with my lab results showing the positive test result. Especially the infectious disease doc who told me all I needed was a psychiatrist (he almost lost a knee cap that day!)
Just curious if anyone else has wanted to do this/gone thru with it and if it was worth their time?
-------------------- No tick bite/rash sick Nov '09 diagnosed Mar '11 Doxy/Zithro LOTS of supplements
Psalm 62:5b He is my rock and my salvation. He is my defender, I WILL NOT BE DEFEATED! Posts: 127 | From Illinois | Registered: Sep 2010
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posted
I didn't send a letter, but I did call my Neurologist personally to tell her because last I was tested by her I felt a bit humiliated when she told me maybe the pains and twitching in my hands was anxiety. Prior to the last visit I felt I was taken seriously, but when she or my general doc couldn't figure it out they both acted like I was nuts. General doc wanted me to take prozac. Needless to say, it felt good to tell the neurologist my diagnosis and tell her "That was what was wrong with me". She tried not to react and said she would like to have a copy of the test for her file. I could tell she was affected, so it was good with me...
Posts: 39 | From NY | Registered: Feb 2011
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posted
YEP! I sent out SIX letters! My very kind urologist ( I have IC ) sent me an encouraging letter in reply. It was so nice of him to do that!
Most of my doctors had tried to help me, but either didn't test me for Lyme .. or DID and it came back negative.. end of story. ( I never knew which, since I had no knowledge of Lyme disease. )
Hope that makes sense! I was misdiagnosed with fibromyalgia for many years.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
If you do contact past doctors -- do not give out the names of your current doctors who are treating you. If they ask for tests 'for their files'... be sure that your doctors names are not on them.
NOT TREATING Lyme SHOULD BE the crime...
In reality, TREATING Lyme IS the crime.
99% of the doctors are doing things the way the CDC, the NIH, and the IDSA say things should be done.
We had the same thing happen to us. Most on this board have had at least one doctor tell them it is all in their head. The ID doctors are the worst!
People are fighting for their lives and doctors are ignoring them! This monstrosity is a crime against humanity and there must be a way to stop it!
Whatever you do, just make sure you keep the 1% of doctors who are willing to treat us safe.
Better yet... have a public viewing. Invite the doctors. Maybe they will learn something.
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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posted
thanks for the tip on protecting the name of my current dr. I will definitely do that!
My rheumy genuinely wanted to help and admitted that she knew nothing about lyme. I would like to call and send her the info because I think she'll learn from it.
The neuro, inf dis, and gen prac were all disrespectful and degrading. I am angry with them and would like them to know that their ignorance made them stupid!
-------------------- No tick bite/rash sick Nov '09 diagnosed Mar '11 Doxy/Zithro LOTS of supplements
Psalm 62:5b He is my rock and my salvation. He is my defender, I WILL NOT BE DEFEATED! Posts: 127 | From Illinois | Registered: Sep 2010
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kidsgotlyme
Frequent Contributor (1K+ posts)
Member # 23691
posted
I didn't send a letter, but I did go in person to tell them that my daughter WAS actually sick with lyme disease.
This was after the doctor looked at her Igenex test and said that it was probably false positive because "we don't have lyme disease in Tennessee!"
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
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Hambone
Frequent Contributor (1K+ posts)
Member # 29535
posted
Does anybody have a sample letter they'd be willing to share, or a template for others to use to send to their doctors?
I've been wanting to send "I told you so" letters for quite a long time, but I never know what to say without sounding really really po'd.
That will only make them defensive.
I have no idea how to write a semi-kind letter about this huge injustice.
I just don't even know where to begin. How do you inform a doctor they failed you miserably and did great harm to you physically, emotionally and financially... while trying to come off as educated and completely sane?
I would LOVE to see what others sent to their doctors so I could get an idea of what to say.
Posts: 1142 | From South | Registered: Dec 2010
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posted
I'm working on a letter to send, i'll post it when I finish it. I'm trying to find the right words (hard to do with my lyme brain!) that won't offend them, although they didn't mind offending me! I'm hoping if I can stroke their inflated egos a bit they won't be so close minded about their mis-diagnosis' (plural, I'm sure it's not just me)
I e-mailed the doc who was my PCP when this all started. She was a very good friend at the time. She completely avoids me now and she didn't respond to my e-mail.
I was very careful with my words in the e-mail and it was completely non-threatening. Just a "hey how are ya, haven't seen you in awhile" e-mail. With "oh by the way, I did end up testing positive for LD through Quest".
I get the feeling that she knows she failed me but her pride won't let her admit it, so she avoids me so she doesn't have to think about it.
The sad thing is, my cousin is her secretary and is going through the EXACT SAME symptoms I've had and has let the dr convince her it's MS. The same diagnosis she gave me. My cousin trusts her with her life and wont push the lyme issue. It infuriates me!
-------------------- No tick bite/rash sick Nov '09 diagnosed Mar '11 Doxy/Zithro LOTS of supplements
Psalm 62:5b He is my rock and my salvation. He is my defender, I WILL NOT BE DEFEATED! Posts: 127 | From Illinois | Registered: Sep 2010
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
I sent letters along with PA LDA booklet. Don't know if it was a waste of time or not...never heard or saw docs again.
My primary doc still refused to accept the lyme dx and refused to read the info.
Said he would send me to an infectious disease specialist though. This doc trained docs for UCSF Medical Center.
he refused to consider lyme...said we could have a paper war if I wanted though....he could match my info for lyme against his info against lyme...
as far as what to do about my symptoms and health...have a nice life..see ya
he was not a mean guy...actually a nice guy don't mean to come across that he was mean...
as time went...learned that it is the nature of the beast in the lyme world
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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posted
I did write to the therapist who recommended that we admit our daughter to a psychiatric facility when she got really sick.
I explained how damaging her diagnosis was to our daughter and the trauma she still suffered from because of it. I also included an ILADS brochure for psychiatrists and psychologists to try and educate her. My tone was more educational than angry. I never heard from her, but I sent the letter because I needed to, not because I needed a response.
I think trying to educate past doctors is a great idea. But getting stuck in how much they damaged you is not such a good thing. I am grateful that we did get diagnosed eventually and I don't want to hold onto anger that isn't good for my health (sometimes easier said than done).
-------------------- "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." Anonymous Posts: 450 | From California | Registered: Feb 2008
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posted
I wanted to advise my former doctor, NOT to say I told you so, only so he might recognize it in the future and save someone from what I went through.
I have not taken any action on it for 2 reasons.
1) Couldn't figure out how to word it in a way that would only be viewed as positive.
2) Worried that it may trigger unwanted scrutiny or action against my LLMD.
Posts: 29 | From East Tennessee | Registered: Nov 2010
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posted
i thought about to send a letter too, but.. i really dont want to waste more time for the dumb doc's, instead of writing a 1 hour letter, i prefer to spend 1 hour with my girlfriend. i think, that the dumb doc's even dont give a XXXX what a "patient who dont has any idea what medicine is" is writing.
greetz
Posts: 371 | From velocity of light | Registered: Sep 2009
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posted
I sent the letter to my former GP, Neurosurgeon, Neurologist and Rhuematologist...
The neurologist did send me a letter asking for my records. I sent a polite letter back asking why would I do that? You're no longer my doctor? Basically, you weren't interested then, so why are you interested now? To somehow cover your ass?
You wouldn't believe what I had to do to get my sons previous pediatrician to sign his Igenex form.
Bought a copy of OUS for my endo. She's the one who signed my Igenex form. She has watched it several times and has lent it to her colleages.
She is now a wonderful Lyme Literate endo, before she was just a wonderful endo. I think the world of her. Love her to death.
Posts: 699 | From confusion | Registered: Jan 2011
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Hambone
Frequent Contributor (1K+ posts)
Member # 29535
posted
Ok. I'm getting more and more ideas of what to say. Keep sharing if you will
I especially can't wait to send a letter to the dolt who, when I asked two years ago, "Could it be Lyme? ...and his smartasse answer was, "Oh geez, everybody thinks they have Lyme nowadays." And he completely blew it off and wouldn't even consider it.
Also, I want the psychiatrist who told me, "You need to stop searching for answers. You are where you need to be ( meaning..in the hands of a shrink who will drug me because I'm clearly just depressed ). Because of that comment, I stopped looking for answers as to why I was so sick for another 2 years, allowing the bacteria to just get its claws in even deeper.
Grrrrrrr
Posts: 1142 | From South | Registered: Dec 2010
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Hambone
Frequent Contributor (1K+ posts)
Member # 29535
posted
Question...
If I send a copy of my results with these letters, and it says IGenex Positive, but CDC negative....
will that CDC negative result justify in their pea brain heads that I don't have Lyme?
Posts: 1142 | From South | Registered: Dec 2010
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posted
My favorite line from my old GP when I pushed her to test for Lyme was, "I think I know Lyme when I see it".
I asked, "How many people have you diagnosed with Lyme by looking at them"
Didn't answer. Ran into her after I switched doctors and tested positive through Igenex. Told her she needed to get her Lyme Eyes checked because she missed Lyme in me for 18 months.
She asked who was treating me. I just said, "A doctor who listens to their patients"
Again, no answer.
Posts: 699 | From confusion | Registered: Jan 2011
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Hambone
Frequent Contributor (1K+ posts)
Member # 29535
posted
Good for you, Stillwater. These jerks need to be put in their place.
Posts: 1142 | From South | Registered: Dec 2010
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