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 Post subject: Treated like a fibro patient....
PostPosted: Thu May 08, 2008 5:56 pm 
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Well today at my pain management appointment the nurse said to me, "You know, many would think this was all in your head". I was caught off guard and could only respond, "Then I invite them to live in this body for one month and I will tell you something else, LLMD's believe Fibro, CFS and MS ARE untreated Lyme". No response what so ever.

They have 1,700 patients treated for pain at this doctor's office...I am telling them next month with proof in hand that if they test their patients through Igenex, probably half or MORE have LD. I am going to challenge them to start testing patients through Igenex next month. I am sure most of their "pain" patients are misdiagnosed with Fibro, MS, CFS and more. I have left ILADS fliers and done what I can to help the patients coming and going. The doctor in this office is very accepting of my Lyme and even called me once to ask for help with a patient he believed had Lyme! But he is rarely around...the nurses run the show.

On the way home, I started thinking how last month my doctor there had mentioned that he had been to a fibro conference. They had the Md's "vote" "Do you think fibro is real, or a somatoform (made up, hypochondria) disorder?" The majority response of the Md's was "somatoform".

So as I was driving home, I wondered if the nurse thought I had Fibro, either way, what a nasty remark. I almost felt like going back and saying "How would ANY doctor think this in my head when I have blood tests that show 4 bacteria and 4 viruses?"'' Fibro patients have no proof of anything wrong and I HAD to be confused with a Fibro patient.

I think it was Les Roberts (author of the Poison Plumb) who offered to the IDSA a pint of his blood to be "transfused" into any doctor that doesn't believe chronic Lyme exists...no takers of course! I think I will offer this next month to the nurse...and say, "Anyone who believes I am 'making this up' I will gladly donate a pint of blood to, then they can tell me, is it real or made up?"

Think anyone will be game?

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 Post subject: Re: Treated like a fibro patient....
PostPosted: Thu May 08, 2008 6:04 pm 
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It is discouraging when things like this occur. It's a test.

I like his analogy regarding the blood donation. He makes a great point accompanied by a thought provoking word picture.

I hope you have opportunity to share your tests, if she is receptive, at another visit - to help her understand its not always as it seems; but, more important to ask really good questions to ensure understanding and to avoid attaching incorrect viewpoints or opinions. Especially when one serves in the medical community and is called to compassion, wisdom and care.

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 Post subject: Re: Treated like a fibro patient....
PostPosted: Fri May 09, 2008 10:00 am 
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It is a test, that I know. I kept thinking about it all day, into the evening. I just grew more angry. I am EXHAUSTED with the Md's and their nurses being so illiterate. I wonder why CALDA doesn't do a huge media blitz.

California is ALWAYS brought up as highly endemic by ILADS and the IDSA. Why and how are these doctor's missing this? I am not. All I have to do is go to my county Health dept website and they post "tick" warnings twice per year. Yet 99.9999% of Md's are clueless.

I feel sorry for their other patients, especially the Fibro's and others with "no proof" of symptoms.

I found a study a long time ago online, I saved the link, it is now GONE....I wanted them to see this...it was a study of 100 Fibro patients tested for LD, every single one tested positive. Of course the link is gone.

Calda needs to get involved more ...what are they doing? I need to talk with them some more and ask why they have not pushed for a media blitz - like we get every year about w. nile virus.

It is tiresome to constantly hear ... it is in your head. Paul has heard it 20 times or more, I have heard it many times, even Danny has heard it. But I will admit, that Igenex test does hold some weight..with that in hand, they are in awe...really.

I have tried to educate these offices every visit. My husband's primary was receptive and even somewhat knowlegeable. Labcorp - is the only very "receptive" one. The manager there loves to hear something new about LD everytime I visit. She has our site on her favorites, she encouraged me to leave more ILADS fliers. She said last time, "Dana, I can't belive how bad this is...people need to know!" She got it! Why can't these doctors!

I never stop talking....never...

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Always check w/your MD regarding advice given by me or any member at this forum & any articles & info. at this site. Site disclaimer: viewtopic.php?f=6&t=16


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 Post subject: Re: Treated like a fibro patient....
PostPosted: Tue May 13, 2008 8:43 pm 
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The bottom line is that the nurses comment was TOTALLY out of line. I know when comments like that come out of peoples mouths we are so stunned we don't think of an appropriate response until later. I hope you say something to her on your next visit! ~~ Yikes


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 Post subject: Re: Treated like a fibro patient....
PostPosted: Tue May 13, 2008 11:17 pm 
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Oh I will be ready next month. The more I have thought about this, the more upset I have become. I have 8 disease/virus issues ALL proven by blood test...yeah it is in my head.

I filed an anonymous patient complaint online about it.

Fibro or not...they better learn compassion in the business they are in.

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Join us on Facebook and connect with other Lyme patients: http://www.facebook.com/home.php?sk=gro ... 2524317756
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Always check w/your MD regarding advice given by me or any member at this forum & any articles & info. at this site. Site disclaimer: viewtopic.php?f=6&t=16


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 Post subject: Re: Treated like a fibro patient....
PostPosted: Wed May 14, 2008 6:35 am 
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i'd bring it up to your doctor, I know you really like him. and bringing in materials and such is a great idea. she obviously needs educated

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(Isaiah 53:5 NKJV) But He was wounded for our transgressions, He was bruised for our iniquities; The chastisement for our peace was upon Him, And by His stripes we are healed.


Any advice given by me, is just that, advice. I am not a medical doctor, and I suggest you talk to your doctor about any concerns.


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