She then discharged me with papers on how to handle stress, anxiety and the suggestion to do yoga which I have been practicing for three years prior.

Their response was "It's the wrong time of year for Lyme".

"You can't get lyme disease in January."

I was referred to an Infectious Disease specialist in NJ, and when thru my whole list of neuro symptoms with her. She told me that if I had 'Active Lyme' my knees would be swollen.

She then told me to take Advil, since it makes me feel better. When I asked, "So, then it's OK for me to take Advil every four hours for the rest of my life?", she said, "Yes".

I've got like 50 of them, but this is my personal favorite...

In a medical center on Cape Cod of all places.. with a huge bulls-eye type rash..

Doc: 'No..No.. it's not lyme. It's Impotigo.. '

Me: 'Doctor, I don't remember the actual tick bite but I am absolutely sure that it is Lyme or something very similar.. this is why....'

Doc: 'It's not Lyme. If there was no tick there is no Lyme'

I stand up turn around & notice a LYME DISEASE AWARENESS POSTER on the wall directly behind where I was sitting! Perfect side-by-side match & even information about how easy it is not to notice a tick bite!

Amazing! lol!

My GP Jan '05
"I don't have time for you today, I'm backed-up and have a bunch of other patients to see, and I'm the only Dr. here."

We switched peds. because she was more like a cheerleader - always superficial and "perky" - than a real doctor.

He was in for his yearly exam which consists of checking his vitals and not much more..she would never be involved in his Lyme treatment or speak to our LLMD. At the time Max was herxing badly, feeling terrible with a continual headache...at the bottom of the form she wrote...

"Healthy boy with chronic Lymes"

How can you even talk to someone like that???

When does the rash actually turn green?

(Lime green) I thought, only in New Mexico!

Trails

quote:

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Originally posted by trailsgrl:
In 2001 while hospitalized with severe herx reaction to Rocephin, I had a nurse ask me:

When does the rash actually turn green?

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You have got to be kidding! Boy they were bright!!

Episode 1:

I was first diagnosed with Lymes at age 13 in 1993, I was hospitalized for a week and put on morpheine for my pain. During my 5 day stay my current doc (who against every other doc I had seen was willingly treating me for Lymes though I had not had a positive test) well he commited suicide. That by itself was tragic, but the quack that replaced him actually said this the very first time I ever met him:

quack: (walks in holding my chart, rifles through it) we're discharging you because you do not have Lymes, you're completely fine except for the fact that you have numerous mental problems and that you need to be admitted to a pyschiatric ward to deal with them. I'll talk with your parents about it as soon as they get here.

me: (who is under 16 and by law quack should not be discussing any treatment with me w/o my parents who were not there) (as I was on morpheine I didn't care what was going on or how I behaved soo....) ***k you I want another doctor. I am sick. I have Lymes. I need to have my mom and dad here right now. I want you out of my room now.

nurse: (quack had called her in becuase of my "distress" as he called it) what do you need?

quack: give her a shot to calm her down and then discharge her

Needless to say my parents filed a huge complaint that even today still sits on said quacks record. The nerve!

Episode 2:

Now 15 years later since my first bought with Lymes it is back and has been here the whole time...I was never fully over it. I have yet again been through the rig-a-ma-row of 5,000,000 quacks that all say the same thing; although there was one I was not expecting.

Days after waking up one morning almost blind, (this was the onset of my obvious signs that Lymes was back in my life) I sought the advice of an opthomologist quack....visited her 3 times within 3 weeks, desperate to regain my vision. Each time she did normal tests, etc...all came back normal. So the last time she saw me she looked at me and said:

quack: have you been fighting with your boyfriend?
me: no everything is fine
quack: (looks at boyfriend whos with me) do you fight a lot? have you noticed her behavior change? do you think she is depressed?
boyfriend: (looks at me like "are you kidding?") no changes everything is fine really she just can't see anymore
quack: (back to me) you were recently promoted at your job right?
me: yes but I love my job and am good at, there's no problems there at all
quack: well I can't find anything wrong with you and I have discussed your case with a colleague and I think you have what's called "hysterical blindness". you see a counselor right?
me: (starting to cry) yes but that has nothing to do with..
quack: (interrupts) you should focus on more therapy and deal with your mental issues and depression. you have "hysterical blindness" and the only one who can make your vision come back is you.
me: (now sobbing) I can't deal with this again. This happened to me as a kid, no one would believe me and now you won't either. I need a doctor who is willing to help me and you are not that doctor by far. (abrubtly left her office, went to receptionist desk and made it very obvious that i was unhappy with quack and needed to talk to her supervisor) Also put an official complaint on her record as well. The nerve...like I want to be partially blind!

Episode 3-

Finally am seeing a neurologist who can interpret my MS looking damage seeen on my MRI's and delayed VEP tests and perhaps shed some light on my situation. On visit number 3 I tell quack that I had been running a temp of 100-101 for the past 4 days. Quack looks at me and asks me accusinly "Why did you take your temp?" I replied "Because I felt hot, like I had a fever." Shouldn't his first question be..."hmmm that's no good, have you felt like the flu...blah blah?"

On visit number 4, 2 1/2 weeks after having a spinal tap done I tell quack that I had been super thirsty and drinking like a gallon or two of water a day for the last 2 weeks. Quack looks at me with disdain, "Why are you doing that?" I'm like what? "Because I was thirsty". Quack replies, "Well don't do that it's not good for you." So I say,"How do I deal with being so thirsty? What is causing it then?" Quack says: "Just don't drink that much water. Be thirsty, it's not going to hurt you."

Last time I saw him I brought in my symptom journal. He looked appalled. I read him off all of the things that had been going on for each day, and there were lots. He looked at me and began the speech I had been dreading, that we have all heard "Well some of that is important to know, but most of that I think is you just being too in tune with your body, (is there such a thing? I don't think so) too conscious of it. I think you are just very wound up about this whole thing and need to relax. I'm going to give you this rx for Impramine to help you be less anxious, and I want to talk to your therapist. Also I think you can go back to work now, things seem to be resolving themselves and the medication will help even more. Just come back and see me in 4 months and we will redo the MRI's and if we see more brain damage then we can diagnosis you as MS."

This was incredible to me as I had just told him that my arms and legs had gone numb and tingly for a whole week, seizures, tremors, episodes of falling down, speech impairments, vision issues had worsened, and the headaches now were unbearable and so much more. That was the last time I saw him, and when I got the positive Western Blots back from my LLMD that were done at Ingenex I sent him copies!

Thanks for sharing all these stories...they are really good to hear so that we all know we weren't alone in the hypochondriac cave!

"I don't have time to keep up with the regular diseases! How do you expect me to have time for something like Lyme!" "Besides, I haven't had a vacation all year because my malpractice insurance is so high!"

Kindof makes you NOT wonder why malpractice insurance is so high!

Internist, Infectious disease MD at University hospital:
"Even though your Western Blot came back still positive for Lyme, you were treated with antibiotics for 9 weeks two years ago -there is no way you can have Lyme now. You will just have to accept that this is a false positive and you have MS or fibromyalgia"

Found an LLMD after that one!

Me: I can't see out of my right eye anymore (28/29 years old at the time). It happened over a 12-day period.

Quack: How do you know you can't see out of the eye? That's right. How do I know I cannot see out of the eye??????

Me: Well, what do I say to this? I had to paid $150. to him before he would see me(Ophthalmologist). I was living in Canada at the time. Dealing with the limited amount of doctors and red-tape.

Quack: Well, the only way to know what's going on with the eye is to TAKE THE EYE OUT OF YOUR HEAD AND DISSECT IT. The only problem is we couldn't return the eye back in your head(my only problem). However, this problem isn't your eye your need to see a Neurologist.

quote:

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Originally posted by bigmamma:
You have got to be kidding! Boy they were bright!!

---

quote:

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Originally posted by bigmamma:
You have got to be kidding! Boy they were bright!!

---

I had called her one day because i thought i had a seizure while driving...while i was dealing with the oil heat guy she called and my sister answered.

My sis says "korinne, dr.k is on the phone" i get on the phone and the doctor says to me "well thats pretty bad that your family knows me by my voice on the phone already"

I guess she never heard of caller ID.

Another time is... i was in her office and she was thinking that i could possibly have a tumor in my pituitary.

So i asked her while she was writing up the perscription for an MRI...."what are the symptoms of a pituitary tumor?" and she says "im not going to tell you the symptoms because you'll be back in my office the next day saying you have all of the symptoms of a pituitary tumor."

Belive me there are many times where i just wanted to smash her head against the wall The famous words i would always hear was "korinne, what am i going to do with you?"....

well i dont f-ing know, im not the doctor here...shouldnt you know? lol

those are my doctors stupid phrases.

I finally told him, "If you don't do something I'm going to slip into a coma! All I do is sleep!!!"

He said, "If you don't quit complaining I'm going to write down chronic fatigue." Like that was a threat?

I said, "Well, write down something!"

quote:

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Originally posted by Korinne21:
My doctor said very many things to me but heres 2 things.

I had called her one day because i thought i had a seizure while driving...while i was dealing with the oil heat guy she called and my sister answered.

My sis says "korinne, dr.k is on the phone" i get on the phone and the doctor says to me "well thats pretty bad that your family knows me by my voice on the phone already"

I guess she never heard of caller ID.

Another time is... i was in her office and she was thinking that i could possibly have a tumor in my pituitary.

So i asked her while she was writing up the perscription for an MRI...."what are the symptoms of a pituitary tumor?" and she says "im not going to tell you the symptoms because you'll be back in my office the next day saying you have all of the symptoms of a pituitary tumor."

Belive me there are many times where i just wanted to smash her head against the wall The famous words i would always hear was "korinne, what am i going to do with you?"....

well i dont f-ing know, im not the doctor here...shouldnt you know? lol

those are my doctors stupid phrases.

Wait, want to write one more thing. When i had come up positive for lyme disease in august of 04' the neurologist had actually tested me and never told me i was positive until i found out on my own.

When i had faxed the results to my doctor she supposidly called an infectious disease doctor and she said to me "Well i cannot treat you because you only have 2 reactive bands on your western blot and you need 3 or more to be positive."

While my ELISA was positive and i had the 30 kda band and the 41 kda band....I demanded to be tested in 2 months and she said i was negitive....i later found out i was actually positive and the PA department of health had contacted her with a letter asking if she was going to treat me for lyme's disease.

I actually found that one out today, i got all my medical records in hand. My dad says to me "why would someone do that to you?" ...i dont know dad i really dont...she obviously did not care.

~korinne~

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I took this to mean it was serious. And it explained why I have felt the way I have for, oh, 15-20 years.

"if I'd get bitten that often I would really dislike ticks."

The neurologist was the best -

Husband says "I was being treated for Lyme Disease just when this started - could it still be that?"

Neurologist says "Oh come now, I really don't think so - what do you think?"

Husband should have said "You're the b---- doctor being paid to do the thinking!" but he is far too polite.

I went to walk in clinic because I had a sore throat and cough and wanted a strep test. During the history part I told the doctor I had lyme disease.

He knew very little about it and I felt it my duty to educate him (at least a little). I just started spouting all kinds of useful information.

After a few minutes of this he said to me, "You know an awful lot about lyme disease. WHY do you know so much about lyme disease?"

I went on to explain that I knew I had it for a year or 2 and had been through some treatment and thought it was a good idea to learn as much as I could about it.

Then he said, "You shouldn't read so much!"

Which reminded me of another one.

When I moved to florida, I was very concerned with finding a LLMD. I came from an area that was endemic and had quite a few.

So, I sat down with the phone book and called a bunch of doctors' offices (rhuematolgists, neurologists and even IDs) to see if any treated lyme and how they would treat.

After a few days of this I hit on a rhuemy that sounded promising. I promptly made an appoinment and had them request my records.

I was on tetracycline at the time and she said to continue with what I was on. (It wasn't helping and I was feeling worse but I did for a few months.)

When I felt so bad and knew I had to do something I asked what else we could try; she seemed flustered. (She sounded willing to treat but had no clue how.)

Then she comes out with, "You know I have patients that are in much worse shape than you in wheelchairs, etc. that are working full time."

I ran from her office so fast. She didn't understand the first thing about lyme disease nor did she hear a word I said in those months. (Like I would have chosen to live on pennies a month and be sick and in pain because it was a great deal.)

I called all over the country until I got a referral to my present LLMD. Heh, my disability review papers came a few days later. I can't say enough about good timing.

Please note: Stay away from the rhuemy-duck S. in Boynton Beach Florida.