Is it normal to get angry at all the doctors who missed diagnosed you?

I've been fighting Lyme and co-infections for about ten years, although I didn't know that's what I had. The last two years have been the worst. I finally was diagnosed officially by a LLMD on September of 2015. As you all know it's been hell, but I am making progress and I maybe can see a possible remission in the somewhat near future.

The strangest thing has boiled up in me. I started thinking about all the doctors I had been to in the last ten years and how all of them missed the signs of Lyme. What bothers me the most is that all of them never even tried to figure out why I was having all these weird symptoms. They just gave me medication to cover up them up. What was the worst part was that I was somewhat blamed for the some of the symptoms I had. One was horrible anxiety (bartonella) which lasted for a long time. In order to get anti-anxiety medication, I had to sign forms that said I would allow them to drug test me anytime I came in. Since my anxiety was so bad and I had limited anxiety medication, I would self-medicate with wine. I was constantly scolded for that. I know it wasn't the best idea, but when anxiety hits hard in the middle of the night, I felt I had no choice. I had insomnia for most of the first 8 years. They gave me Ambian which I gladly took. Of course, they never mentioned that getting off of Ambian would be hell and of course it was my fault because I didn't have good "sleep hygiene". I started getting getting neuropathy early on and was told that was just a part of getting old. I wasn't diabetic or had any of the other causes. Why didn't they do further testing??

After two years of treatment, I can fall asleep without any aid. My anxiety is almost gone. My neuropathy on the other has not gone away but is slowly getting better.

I'm also frustrated with myself because I just listened to the doctors and never questioned them. Now I research everything before it goes into my body.

I remember when I think I first got lyme disease. I had achy joints, muscles, fever, headaches which all lasted for over a month. I went to my internist and she ran a cbc, cholesterol, and I asked for a c-reactive protein test. I had read about it in a women's magazine. Everything came back normal except the c-reactive protein which was really high which meant I had a ton of inflammation. She scolded me about my diet and exercise even though she never questioned me about them and sent me on my way. That was the beginning. I saw 9 doctors after that before I was diagnosed.

I know everyone has a similar story and my story is by far the from the worst. Do any of you have these feelings of anger and mistrust of doctors and I'm furious with the CDC. I hate to waste my time being angry about something I can do nothing about. So I thought if I wrote it out it might help. If other people have these feelings what has helped? I would love to hear about them.

The one thing that I try to do is educate people about Lyme Disease through social media. That's about all I can do right now. My big goal is to try and educate the doctors in this rural area that I live in.

Thanks for reading. Blessings to all.

I was fortunate that i had a supportive GP who didn't misdiagnose...just continued to test - lab work every week...for the longest time...MRI's, a ct scan, couple X-rays...sent to endocrinologist...and when I wasn't happy with him...she sent me to a second one that I chose. He then said it was 'neuromuscular' issue not endocrine..so my GP sent me to a neurologist...who sent me to a Physiatrist. He focussed on my frozen shoulder symptoms..only.

She never once suggested it was psychosomatic and I am so grateful of that...I hear the horror stories.
She never once suggested I had fibromyalgia.

She tested me for Lyme disease...it came back negative...should she have known that it was a poor test?

She has supported me since my diagnosis via Igenex...and I am grateful for that.

IDK - I think the anger should be further up the line. (in my case)

I agree turn it to activism...
the best llmd let me go home with gut stuff and stuff for depression ...his nurse was actually the one who broke it to me...
My gf had to stop me from spitting on the id duc that refused to treat me when i saw him in the store .
the first rife dom said i was cured and let me go .i just feel compelled to help others if i can help one persons mystery ,prove it one time with my microscope ...so far i have helped many including my family and loved ones ...ignorance was bliss but we all were dying now just more aware and slower ...idk i move it to the pharma insurance and cdc isda and the ****s who made this pathogen so virulent
docs are just pawns ..go for the rooks or the bishops...even checkmate

Laker,

Hi. I imagine your feelings to be quite normal. I mean anger is one of the stages of grief and we are all grieving our pre-healthy life.

Anger at someone else is like the making a poison tea for your enemy but you drink it. Anger also makes Lyme worse.

Since getting reinfected in July 2016, then finding out I had Lyme for years before that, yes, I was a bit angry. I went to my trusted internist who finally diagnosed me with fibromyalgia in 2014 because she didn't know what else to say. My gyn. told me I was depressed and offered prozac. I kept saying "I'm not depressed something is different in my head." My internist then suggested a self help book and intimated it was my thoughts that were keeping me from being fully healthy because nothing was wrong with me.

I probably am the most upset at myself. My son also has lyme and I found the ticks on him when he was seven. Tests came back negative because they were done too soon. I didn't know you had to wait. His little body went through years of symptoms. Finally I asked over and over "Could this be Lyme?" His doctor actually laughed and said "You worry too much you have a healthy child." Ugh.

So no anger, but lots of guilt for not knowing better. Oh and I wouldn't mind being refunded for all those doctor visits.

I am glad you found out, glad you now have hope. I do believe we can heal.

I think as my brain fog has started to lift, the only real thing that's improved for me so far, I have started sorting through the years and the dr visits and treatments, surgery and tries by them to fix whatever specific symptoms they focused on, that yes I'm mad too.

Are our Drs aware of Lyme and warned against going there?
Are they just not taught about it medical school?
Is the still guilty CDC and tightwad insurance companies at work here in refusing to make Chronuc Lyme and co a recognized and valid treatment need?

I have to see a family dr soon for refills for normal stuff and I've already started the debate over whether I should mention my diagnosis to him at all. Will I be treated differently?

Thanks everyone for your support. Many of your comments really helped. I guess I am going thru the stages of grief, I never thought about it like that before.

While it doesn't make me feel better that almost everyone has gone through the same slow process I've gone through, I feel like it I'm not alone.

I think reading all your comments a few times will help me get out of this dark place I'm in.

This group is really so helpful and I'm not sure what I would do without it.

VCL,

I agree with Trav - and many doctors just believe what they believe.

Example: As soon as I was bitten I took myself and my tick (in a ziploc) to my doctor. I was told not to worry because most ticks don't carry Lyme. I then asked for abx. My DR knows I hate them and will refuse them always. Was told no, not necessary. Then I was told that the tick wasn't on me long enough to even cause lyme.

12 days later: bulls-eye, symptoms, went on Doxcy.

LLMD said ticks can be on you for ten seconds and bombard you with bacteria, act as if all ticks have Lyme and go on abx immediately if you ever find a tick on you.

So a little bit different than what first doctor said. Then an ID, specializing in Lyme (before this board told me to go to LLMD) said Lyme people are crazy and if I am still sick after two weeks of Doxcy it has nothing to do with Lyme!!!!

I should add that I live in Manhattan and these are all specialists in their fields. It is so out of control crazy that I don't listen to doctors any more. I hear them, I take notes, I come home and ask you guys.

I think the reason I don't have the anger at my GP is because she did try to sleuth out what was wrong with me. She just wasn't educated about lyme disease.
She spared no expense to find out what was wrong with me.

...and she honestly believed there was something wrong with me.


When I first started seeing her she was at one clinic...and after several months she moved to a different clinic. It was a clinic that I had been a patient of prior...and the Dr.'s there were very reluctant to do much testing. It was like it was coming out of their pockets. I thought the Dr. who started up the clinic was 'in charge'...so I was concerned when my Dr. announced she was moving there. I thought her practice of testing was going to change.
My first question to her was: "You have been doing a lot of lab tests...is that going to change now?" ...and I explained what my experience was of the other clinic.
She replied "No other Dr. is in charge of me. It is my right to test. i requested all those tests for you because there was something wrong...and I didn't know what that was".

(not exact words she used...but something along those lines).

......how could I be angry at that?

I am another one that spent decades being sent from one doc to another in search of answers, and even having a Dr. look at my Lyme test and tell me it was a false positive. I was angry at him at the time for suggesting it could by syphilis, because I had been abstinent for many years at that point.

But no, I don't feel angry at any of them..except for the ones that work for the Social Security admin. screening disability applicants. The ones that reported over and over than I was lying about some symptoms, or that they were somataform(imaginary), thus preventing me from getting my disability for 9 years of jumping through their hoops. Those are the ones that I am angry at, though it's not a obsessive anger, more of a resentment.

Village Crazy Lady said...
Girlie you are very lucky to have a GP like that! I wish she could teach all of them her ??? Arg I can't find the word!! Approach, belief, methods, concepts, plans, ideas...... it's in there but it eludes me

I do feel fortunate. When I got the positive Igenex test result...she asked for a copy for her files.

She supports me by giving me a standing order of Hematology, liver and kidney function tests (monthly)
These are all covered under my medical plan. If she didn't do this...and my LLND gave me the lab req instead..I would have to pay for every one.

When my WBC count was low ...I was concerned I'd hear something from her about long-term antibiotics...
but no, she looked at the number and said it wasn't anything to worry about yet.
Same as my high liver enzymes... actually - she sent me for more tests...to make sure there wasn't something in addition to lyme going on.

I'm crossing my fingers that she doesn't change her attitude at some point....

She has recently gone down to 3 days a week - as she now has a side business (some kind of cosmetic treatment clinic) - I don't want to lose her!

My lesson learned is never try to change a doc-move on and find one that helps.
they aren't family-you aren't married to them-its not for better or worse stay only if they help.

There are some docs out there who help-thank god

OMG yes! One doctor told me "we were just getting old" and one of the neurologists asked me if I was depressed. Grrrrrrrrrrr. I didn't realize how small minded and 'in the box' that most doctors operate in until I became ill. I have literally been to 2 rheumatologists, 3 neurologists, an immunologist (she helped me the most), a cardiologist, an endocrinologist, a naturopath, 2 gastroenterologists, and 2 functional doctors in 4 years. I've been to doctors at Stanford, UCLA and USC teaching hospitals. I told every one of these doctors that there was 'something wrong with me.' After being healthy for 56 years...I KNEW something was making me sick. Now that I have PCR results I plan on sending a copy to each of them...just so it can become part of my record with their practice.

Post Edited (vanessasunshine) : 2/19/2017 12:27:36 PM (GMT-7)