Lyme Disease Support Group

I had a stent placed 2 weeks ago and have been getting the run around with my cardiologist's assistant and staff. My doctor went on vacation and the staff treated me like shit. I had a follow up appointment today and said the following:

-for 30 years I have been dismissed and have had to fight for answers

-I'm not here to get your opinion on Lyme Disease, I know what I have

-I've spent over $400 in the past 2 months at your office, I expect to be called back, not pacified, taken seriously and treated with respect

-your assistant sucks

-a doctor is only as good as his staff

-do I need to find a new doctor, can I expect things to improve?

-are you aware that lyme patients have to "plan ahead" for appointments because of severe pain? You staff insisting I come in to see a doctor all the time is not acceptable

-surgery for a lyme patient is so much worse than for others

-uncontrolled bleeding is scary and I needed some direction instead of someone passing me off on a gyno..you deal with this every day, don't just try to get me in for a co-pay

-after surgery I dealt with tremors and severe pain (not related to the surgery) I bet you didn't know that

-the side effects of plavix mimic lyme and have been very difficult to deal with

I expect to be treated as the employer, because that is what I am...and I am not happy

Do you know how good this felt??? I'm tired of being kicked around, dammit! No more!

I got listened to today, he even told me he wants to keep me as a patient...even got a callback from him directly this afternoon. We need to stand up and not allow ourselves to be treated like this! I now have a clear-cut understanding of the agenda and we can go forward.

I don't simply want to be abusive back to them, but we need to be a part of the process. Be it for Lyme, co-infections or other problems not related to this horrible disease. I will be treated with dignity!

I feel better, and my fight is coming back

Thank-you for reading my rant Love you all!

Hugs

Post edited by: PosionIvy, at: 09/26/2011 12:07 PM

Great job and don't ever back down. You're right, they work for us, not the other way around. To many doctors have a god like complex. I despise the way they and they're staff treats me sometimes. Glad you stood up for yourself. You made us all proud! : )

Gary

iVY

Your mojo is in there, I know it is. Keep yourself surrounded by people that support YOU, because you are right and you will get better.

Thank-you all for your kind responses to my post.

Polka, you know I luv you! Thanks for the hug!!

Ivy

I made up my mind, the last time I was in the ER, I'd never be treated that way again. Below normal WBC, depleted Neutrophils, Dehydrated, 91/52 BP & sever pain all over my body. Was told there was nothing wrong with me & offered anti anxiety pills.

Only to find out later, I had MS.... BS!!!

If a person is at the ER & is treated this way, "FIRE" the ER Dr. & demand a new Dr. If you are told that's the only Dr. available, demand a "Customer Care Advocacy". Things will get straightened out real quick.

Also, if you go to see a Dr/Specialist & are treated poorly &/or receive no services... call you insurance & ask to speak to their own "Custom Care Advocacy" dept. Tell them what happened & demand your Co-pay back.

I've gotten many a copay/fees back by doing this. The insurance company has no idea what's going on unless you complain.

Here's to standing up for yourself. Way to Go, Girl!!!

Dear Sir:

I have an issue with the way I was treated personally and not treated medically at my appointment on (date).

Whether or not you believe chronic Lyme exists is not the issue. However, there exists significant anecdotal and research evidence to suggest otherwise. For the anecdotal one only need to examine the cases of President Bush and Darryl Hall and the significant media coverage concerning their diagnoses and treatments. To the research, a number of studies ranging from Czechoslovakia, Germany, Thailand and Colombia University and more tend to indicate that current thinking about the disease is dated and needs reexamination. I have included some of the resources for your review.

Additionally, my Western Blot test would seem to indicate the presence of Borellia. While I am not a trained physician, interpretation or the results seems pretty clear. There is a critter running around inside me that needs to be eradicated. I have also included the results and interpretations for your review, edification and commentary.

Returning to the main issue, 2 significant sets of conditions that need be addressed were not: symptomatic treatment and antibiotic intolerance.

Let’s strip the “Lyme” label from this discussion and focus on problem number one. I still have an unresolved set of symptoms: burning skin, “pins and needles” feeling in the extremities, neck/knee pain (arthritis?), flu-like feeling and brain fog. I suggest you and this group of physicians slap whatever label on the symptoms that makes you comfortable and design a course of treatment to resolve this thing.

Number two: I was ostensibly in the office to test for antibiotic sensitivity and summarily tossed out on my ear. The problem remains regardless of this bug or future infections. I need to identify antibiotics which I can tolerate for current and future infections. That did not happen. While you may have lived up to “never to do deliberate harm to anyone” I have to wonder if refusal to treat allows a harmful entity to live and thrive inside me, violating a sacred oath.

I have to wonder what course of action you would pursue for yourself, were it you had the same symptoms and issues as I? I suspect you would view the failure of treatment thus far as the impetus to “think outside the box”, research and discover new treatments and ultimately “physician, heal thyself”.

With all of you here, I am ready for anything, I feel. <3

Thanks to you all for the inspiration, and WAY TO GO as well!!! Major kudos!