Just diagnosed with this...

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hopingToFindCure
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Date Joined Nov 2008
Total Posts : 759
   Posted 12/15/2008 2:17 PM (GMT -7)   
http://www.aafp.org/afp/991001ap/tips/23.html

Can someone please explain. I was tested and have CDC reported scores.

I have neck pain and joint pain and memory loss and now I'm so upset that I also have this too.

Ha ha ha!

Does this disease exist or not?

HELP

twingirl
Regular Member


Date Joined Feb 2007
Total Posts : 323
   Posted 12/15/2008 4:18 PM (GMT -7)   
Seriously, did a doctor tell you that you had this functional somatic illness?? Or are you being sarcastic?

Are you asking if lyme disease is real or the illness described in the article?

This article was obviously written by an idiot. It makes me so mad!!!

hopingToFindCure
Veteran Member


Date Joined Nov 2008
Total Posts : 759
   Posted 12/15/2008 6:41 PM (GMT -7)   
I'm very serious. I was recently told this by a doctor because I look very healthy and am recovering from chronic lyme disease.

I have many joint issues and I went in for an evaluation. I mentioned the lyme as an aside but as something I though could help them with.

He said instead I had the above syndrome and that antibiotics were dangerous and that the CDC score was too late and on and on and on and on.

When he explained what he diagnosed me with, I said so you basically don't know what's causing floaters, headaches, memory loss, joint misalignment, tenosyvitis all within the span of a few months. He said yes he knew. It was the functional disorder. look it up he said I'd see.

Well, imagine that a doctor who not only knows about lyme but psychiatry as well. Do I have both? Or just one. I know the anwer, and I'm just mad at this a@#$%%hole "doctor". He's right I don't trust his science.

He said research shows that antibiotics don't work. I had two questions -- was that just one research project and how long were the antibiotics administered.

Frankly, I'm on a five month plan. I continue to improve I will be on them for five months. How do I wean off of them? He wanted me to quit cold turkey. No can do. Am getting better!!!

Dowa
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Date Joined Sep 2008
Total Posts : 1120
   Posted 12/15/2008 7:40 PM (GMT -7)   
Its because we look healthy, like you said, Lyme doesnt always show on the outside and they cant  feel what we feel. The last doctor I saw said to me "Who put this Lyme idea into your head?" Funny, like I would WANT it to be there for some reason. Sad...

hopingToFindCure
Veteran Member


Date Joined Nov 2008
Total Posts : 759
   Posted 12/15/2008 7:50 PM (GMT -7)   
Well apparently with the "syndrome" anything that can be suggested can cause one to feel it.

I agree that the mind plays a vital roll in one's health, but my burning back, my floaters etc., my photophobia, none of that was caused by my thinking -- I have Lyme Disease therefore I have these symptoms. Utter B.S.

this doc is responsible for the research on lyme that disproves the use of antibitiocs.

he was foaming rabid dog.

twingirl
Regular Member


Date Joined Feb 2007
Total Posts : 323
   Posted 12/16/2008 7:29 AM (GMT -7)   
Wow!!

This doctor is so arrogant!!! To suggest you have this Syndrome because he cannot figure out what is wrong with you is just BS!! I'm not sure how I would have handled this. I'm sorry you had to be subjected to that. It's bad enough to suffer have lyme, and then to have to put up with this stuff is just rediculous.

dar

JELAINEP
Veteran Member


Date Joined Sep 2007
Total Posts : 2017
   Posted 12/16/2008 2:18 PM (GMT -7)   
God, just when you think it can't get any worse.  I wonder if we can round up all these doctors and collectively sue their butts off.
 
FROM THE ARTICLE:  Symptoms include common complaints such as fatigue, headache, joint pains, weakness, memory problems, anxiety and palpitations. These patients have a higher incidence of psychiatric disorders.

FURTHER DOWN IN THE ARTICLE:  Traditional psychotherapy and psychotropic medications may be indicated in the minority of patients with a specific psychiatric problem.

HOW CAN WE HAVE BOTH A HIGHER INCIDENCE OF PSYCHIATRIC DISORDERS, BUT ONLY A MINORITY OF US WILL HAVE A SPECIFIC PSYCHIATRIC PROBLEM????????????????  HUH???? ARE YOU KIDDING ME?  WHEN THESE NON-LYME LITERATE DOCTORS START TALKING about THIS STUFF, THEY TALK IN CIRCLES.  IT'S CIRCULAR THINKING. 

AGAIN, FROM THE ARTICLE:  This shift may be caused by a decline in physician authority (I CANNOT EVEN BELIEVE THIS STATEMENT!), an increasing antiscience attitude (HUH?) , exaggeration by the media (WHAT MEDIA??) , and political and economic reinforcement of these syndromes as real medical entities (ARE YOU KIDDING ME?).

I'VE SEEN MOST OF THIS BS BEFORE, BUT THIS IS A NEW "LOW".  PERHAPS THIS DOCTOR HAS A FEW PSYCHIATRIC DISORDERS, NARCISSISM AND PARANOIA!


Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it's the only thing that ever has.  - Margaret Meade
06/00- The beginning, 08/01-LD positive, 10/01- Igenex and CDC LD positive, 10/02-LD positive, 11/03-LD positive, 10/07-Bartonella positive, CD57=3 Current Rx's 11/12/08: Wellbutrin 300mg, Paxil 60mg, Xanax 5mg, Rozerem 8mg, Darvocet, Acidophilus, Rifampin 600mg, Levaquin 500mg, Lyrica 150 to 300mg, Skelexa, Restoril
Medicare/SSDI theme song - http://www.youtube.com/watch?v=bd2B6SjMh_w 
"How much more can I take?", songhttp://www.youtube.com/watch?v=5gHiR1xeOSs
 

Post Edited (JELAINEP) : 12/16/2008 2:21:39 PM (GMT-7)


seeingstars
Regular Member


Date Joined Apr 2008
Total Posts : 266
   Posted 12/16/2008 3:18 PM (GMT -7)   
Hoping to find cure-

I am wondering what other than that bs diagnosis you are diagnosed with. Any coinfections? I ask this because I have had horrible burning in my back and I assoc. that with bart.

hopingToFindCure
Veteran Member


Date Joined Nov 2008
Total Posts : 759
   Posted 12/16/2008 7:02 PM (GMT -7)   
hmmmm. the back burning comes and goes. it is gone today - knock wood.

Seeing stars -- I too have seen stars - swirling type things when I look up. I also had a bizarre flash that sort of looked like a meteorite except I was indoors. This may not be any cause for concern, but it wigged me out the first couple times!!!

Are you on biaxin doxy combo. Are you also on plaquenil.

If so, we have the same doc! And this person is excellent. unlike the one i saw yesterday. who I obviously didn't care for AT ALL

ttlittlestar
Regular Member


Date Joined Jul 2007
Total Posts : 296
   Posted 12/17/2008 5:13 AM (GMT -7)   
I think the solution to the ignorant doctors is to have tick bite them that is infected with Lyme and let them decide for themselves. They should readily agree if Lyme disease is no big issue and does not really exist.

JELAINEP
Veteran Member


Date Joined Sep 2007
Total Posts : 2017
   Posted 12/17/2008 6:09 AM (GMT -7)   
ttlittlestar said...
I think the solution to the ignorant doctors is to have tick bite them that is infected with Lyme and let them decide for themselves. They should readily agree if Lyme disease is no big issue and does not really exist.
This reminds me of the news story from several months back... when they cancelled an airline flight because someone found 3 ticks on the plane.  The airline brought in a completely different plane for this flight!
I think if any one of these uninformed (or misinformed) doctors saw a tick anywhere near them, they would completely freak out.  And, if they saw a tick bite them, I think they would drown themselves in antibiotics for a good 3 months straight.
Unfortunately, one of these doctors would have to get bitten and then they would wake up one day and have their lives ripped out from underneath them.  I hate to drag children into this, but I'm going to since so many parents out there have children, teen agers, young adult kids with Lyme disease;  I wonder just how far any one of these doctors would go to treat one of their kids if they got bit by a tick?
This disease sucks.  It's a horrible, horrible disease.... and articles written by doctors from the IDSA or who are towing the IDSA's guidelines... just add to the horror.  And if we react?  We need an anti-depressant or an anti-psychotic or at least several visits to a pshrink.
If we test negative, we're crazy.  If we test positive, the results are "false" positives therefore, we're crazy.  Since we're crazy and have no "physical" illness, we need an anti-depressant or an anti-psychotic or at least several visits to a pshrink.
There's no way out.  It's a no-win situation... and during this whole process, we get sicker and sicker and sicker.

Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it's the only thing that ever has.  - Margaret Meade
06/00- The beginning, 08/01-LD positive, 10/01- Igenex and CDC LD positive, 10/02-LD positive, 11/03-LD positive, 10/07-Bartonella positive, CD57=3 Current Rx's 11/12/08: Wellbutrin 300mg, Paxil 60mg, Xanax 5mg, Rozerem 8mg, Darvocet, Acidophilus, Rifampin 600mg, Levaquin 500mg, Lyrica 150 to 300mg, Skelexa, Restoril
Medicare/SSDI theme song - http://www.youtube.com/watch?v=bd2B6SjMh_w 
"How much more can I take?", songhttp://www.youtube.com/watch?v=5gHiR1xeOSs
 


hopingToFindCure
Veteran Member


Date Joined Nov 2008
Total Posts : 759
   Posted 12/17/2008 6:15 AM (GMT -7)   
ttlittilestar - I thought the same thing. They should readily agree to have one bite them. Wait two weeks to be sure it's engorged.

What a nightmare scenario for them, to watch their health to right out the window!

I'm getting better I think -- but from no help from them.

JELAINEP - Yes, this doctor talked in circles. He was frustrated and rude and arrogant and full of himself. He is part of the study that says antibiotics don't work. I think he didn't really care about the 1/3rd that it did work on. I simply asked him if that was one single study. He said "No, there were three." I still don't think it's enough. He said I need help to cope with this and that "this" is nothing since it's in my head. I do need help coping. We all do. It's a bizarre thing to have happen to you. But what's more bizarre is the doctors' behavior. They are not God. They are human beings and should not be judge and jury to things they cannot comprehend.

I'm still upset. But you know what, I bet that doctor is too. The way he argued...You just don't do that. The way he said "if you want to get well, "Stop seeing us".

Rudest man I ever met. I knew he was towing the party line. So I laughed in his face.

seeingstars
Regular Member


Date Joined Apr 2008
Total Posts : 266
   Posted 12/17/2008 4:31 PM (GMT -7)   
HopingtoFindCure-

I am on doxy, biaxin, and plaquinel. But unless you are in the midwest we probably don't have the same doc. Just one thing in common-smart choice of meds.
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