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Appt. with Infectious Disease Specialist today

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Posted 8/21/2012 5:13 PM (GMT 0)
I am so angry I could spit. Met with my doctor's group Infectious Disease Specialist. I went in there with Dr. Schaller's new 2012 checklist book, all filled out.

So, she spends over an hour with me, documenting all my symptoms and then does her physical exam.

Then, she announces to me that I don't have Lyme, and that all my problems are from my father being burned to death last fall.

I just sat there with my mouth open. I said, "My father's death caused lesions in my brain? My father's death causes seizures?"

She says, "Well, no, not those, but your neck pain and headaches could easily be from the trauma of your father's death."

I replied, "My horrible neck pain and the week long migraine started in July. My father died in October."

She says, "Your joint pain is also easily explained by that same trauma."

I said, "Even though I didn't have joint pain until a month ago, and it started within 12 hours of taking Cat's Claw?"

So, then I grabbed the book and showed her how I had 75% of the stuff checked for Lyme Disease. She looks and says that those things could be caused by lots of things. I replied that I knew that, but that ADDED TOGETHER they seemed to show Lyme Disease. She then says that clinically, I don't present as Lyme Disease or Bartonella or Babesia.

"Even though I have 75% of the stuff on the checklist????"

And then she says again, "Those could be caused by any number of things."

I said, "Look. I have learned the simplest explanation is usually the correct one. I could have six separate things wrong with me. Or, maybe I have one thing that affects six parts of me. Logically, which is more likely?"

So then she says she will test for Lyme again. "With a Western Blot?" I ask, hopefully. No, with the stupid ELISA again - which might only has a 30% accuracy with late stage Lyme.

This same "Infectious Disease Specialist" couldn't understand why I would want to take a daily probiotic. Good grief.
Posted 8/21/2012 5:28 PM (GMT 0)
Hmm a lot of us have had similar disappointing experiences with infectious disease doctors. The ID MD I met with basically just blew me off, had no suggestions of what might be wrong or where I could go next. He was a JERK. It was only through the under world of Lyme like this site that I got the information I needed to find a LLMD who read my test results and symptoms and immediately started treating me. LLMD is the way to go even if you have to drive to another state which is what I do every month. Good luck to you.
Posted 8/21/2012 5:33 PM (GMT 0)
Have you seen a LLMD that is affiliated with the ILADS group?

I am so sorry you were treated in such an unprofessional manner. Your blood work should be sent out to Igenix lab in CA. You can request a kit and they will send it out for free. I had my GP fill out the paper that comes with the kit and then went to Quest lab for them to draw the blood and and then took this kit to FedEX. Usually, a lab will send it out. All the info and what labs to request from your GP are under the 'New to Lyme....start here' at the top of page one.

You may already know everything I have just written but I had to be my own advocate prior to seeing a LLMD.

Patty
Posted 8/21/2012 8:33 PM (GMT 0)
I'm so sorry to hear about your experiences! It's horrible the way we can be treated sometimes!

These stories are exactly why we suggest that people only go to ILADS trained docs. Of course every once in a while, a decent, independent thinking ID doc is found, but that is actually quite rare - I think I've read about it happening only two times here in the last 5 years.

Please find an ILADS trained LLMD, or go to a Holistic doctor to find appropriate treatments.
Posted 8/21/2012 11:18 PM (GMT 0)
Unbelievable! Unfortunately that's how most Infectious Disease doctors treat Lyme. I couldn't even get an infectious disease doctor to see me. Instead he told a GP not to test or treat for Lyme anymore, give me antidepressants and send me on my way.

I also had seizures from Lyme. Find an ILADS based MD ASAP. Most of them are much better listeners.
Posted 8/22/2012 12:57 AM (GMT 0)
Ugh! It's sad that it feels like you can't let doctors know of any traumatic event in your past..ever...or they'll blame all future symptoms of everything on said traumatic event. I had the same experience. I actually had a doctor whom I didn't tell (about the one traumatic event in my life that happened 10 years ago) tell me that my symptoms were due to "some trauma in my past." When I even lied, and said I didn't have any trauma, he said "it must be a repressed trauma from your childhood"...***

I agree, you should definitely find an LLMD that will help you..it sounds like you've done the research and know your body/symptoms very well. You need to just find a doctor that respects that their patients are capable of knowing their own bodies...and who knows as much as you do about Lyme disease!
Posted 8/22/2012 1:03 AM (GMT 0)
I am so sorry to hear about your father and to have to deal with the ID being so rude and heartless is beyond comprehension.  You need to move forward with all the resources you have and find the right LLMD to help you.

My first visit to my PCP's ID Dr referral was horrible and I was told yes I did have lyme [+IgM on WB] but I am now better - I had 21 days of Doxy @ 100mg 2X a day, he would have only given me 10 days.  I should be feeling better in two or three months when my immune system has a chance to shake itself out smhair !!!

Second ID [same pratice, different Dr - they scheduled me twice and then the receptionist was rude and told me to either keep the 2nd appt or cancel - so I went again] - I was checked for co-infections [negative] and told the same few months I should be back to normal but if things got worse she would be ok with 10 days of Doxy if it seemed merited.

So please get started on the LLMD asap, I have found a long waiting list and a lot of summer vacations standing in the way of my appointment with an LLMD.  I wish you the best.

Take a few extra minutes and know that we are thinking of you and it will get better, slowly...don't let the nightmare today discourage you, keep fighting and check in here for support whenever you need it wink

Alison

Posted 8/22/2012 3:52 PM (GMT 0)
I'm so sorry - hearing stories like this really get me angry! I am sorry to hear about your father - that's got to be tough to deal with, especially on top of being sick! I saw an ID specialist so many years ago, and I'm still so angry with this woman - I had already been diagnosed with Lyme and my insurance company required me to go see this ID specialist in order to continue covering treatment. Well, I was young and naive and when she told me that the first doctor I'd seen (president of ILADS at the time!) was simply crazy and there's no such thing as chronic lyme, and really my problem was that I was a deconditioned teenager! I spent many, many years chasing diagnoses when THE FIRST one I'd been given was the right one, all because of this horribly trained doctor.

I went to a regular old GP a few months ago who told me that my sinus infection was actually depression, and that it was imperative that I take lexapro immediately. Outrageous! I know it can take a while to recover from the blow of these traumatic doctor appointments, but I'd really encourage you to find an ILADS-trained LLMD, or even an herbalist - it's so important to find someone to work with who understands that medical treatment is a collaborative effort - they are not "in charge" and have no right to abuse the authority they think they have, when really they're just being paid to provide a service just like anyone else. You've done so well in doing all of your research and I'm so sorry that it wasn't taken seriously by some dummy. Press on!
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