posted
Hi. Long story short, my girlfriend and I are very confident that she has lyme disease. It sounds like a very tricky disease and we want someone very good. Anyone who can refer us to a doctor in the Kansas City area, please help. Thanks.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
This article just appeared in Kansas City Star!!! Mentions possible lead for you*)!!!! Also mentions "Greater Kansas City Lyme Disease Association, which has had about 500 members." !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! ************************************************* http://www.kansascity.com/196/story/224255.html Posted on Wed, Aug. 08, 2007 10:15
Wrong diagnosis leads to years of `bad days'
By DIANE STAFFORD
Here's how your work life can be changed by something so small you can barely see it.
In May, Lenexa resident John Erickson was fired from Atronic Alarms Inc., where he'd worked since 1985. After he missed months of work, the letter from his Overland Park employer said he was being let go because of ``undue hardship'' on the company.
Erickson had hoped that his decade-long ordeal with undiagnosed and untreated Lyme disease -- acquired from a tiny tick bite -- had finally turned the corner.
For years, Erickson said, he struggled to work with excruciating headaches, back and joint pain, debilitating fatigue and kidney problems. Admittedly, he said, he was hard to get along with. A hard-driving, results-oriented person by nature, his personality changed for the worse as the chronic physical condition took its toll.
But since December, Erickson has been getting aggressive treatment that caused him to miss work completely. Now he feels better than he has in years. He's gung-ho for a job search. But first, he wants to share what happened to him in hopes of helping others get earlier diagnosis.
``Nobody mentioned Lyme. Nobody checked for it,'' said Erickson, who never imagined that the tick bite he got on his back 11 years ago would affect him so profoundly.
``It drained my family emotionally and financially -- and I was fortunate in that I had employer-based health insurance. Plus, I'd had a good income, I'd always lived below my means, and had a six-month savings cushion to draw on. But that's gone now.''
Erickson finally was referred to Carol Ann Ryser, a physician who specializes in chronic illnesses with emphasis on their emotional and stress components.
Lyme, Ryser said, ``is a disease that fools people. Many physicians aren't testing for it because they're not thinking of it.''
Sometimes its symptoms mimic syphilis. It's caused by a similar spirochete, this one a tick-borne corkscrew-shaped bacteria. It may be diagnosed as fibromyalgia, or rheumatoid arthritis, or lupus, or multiple sclerosis, or amyotrophic lateral sclerosis, or Parkinson's.
Patients can be labeled with chronic fatigue syndrome. Others are told they have early Alzheimer's. Often there are manifestations of psychiatric disorders.
Ryser said that even with correct diagnosis, chronic Lyme patients deal with devastating effects on their central nervous systems. Those effects often cause changes in personality and cognitive ability.
Kathy White concurs. A former teacher living in Overland Park, White is active in the Greater Kansas City Lyme Disease Association, which has had about 500 members.
Nine years after getting a tick bite that led to Lyme, White said she's barely able to spend half of each day out of bed. In addition to fatigue and nerve pain, she found that one of her early symptoms was the inability to call her students and co-workers by their correct names.
``I just couldn't think. And I was so cranky,'' White said.
Many of the Lyme association members have lost their jobs due to similar cognitive problems, lack of energy or frequent absences, White said.
For Lyme victims who quit and seek Social Security disability payments, the road can be long and bumpy.
There is no specific listing for Lyme under the Social Security Administration's list of impairments that would qualify one for disability benefits. Lyme sufferers must be evaluated and have their conditions compared to listed impairments, such as those for lupus, for example.
To reach Diane Stafford, call 816-234-4359 or send e-mail to [email protected]. Read her past columns and Workspace blog at KansasCity.com.
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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Hello -- I also believe that my husband has some form of tick borne illness, he is a wetlands biologist and avid outdoorsman so it seems logical based on symptoms that he has LYME or something in this family rather than Hep B/C which our clueless family practice dr beleives.
I have an appt with the Dr listed in the KC Star article on Sept 9th. 2 weeks away, which I understand is a very short timeframe, after calling the other ILADS doctors. But considering he has been bed ridden for a week already I cannot imagine waiting another 2 weeks. HELP!
Posts: 2 | From Belton, MO | Registered: Aug 2007
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Please contact the Lyme Association of Greater Kansas City for physician referral, resources, and ongoing support. Sometimes they are aware of other physicians in the area that might be able to help you while you wait to get in to see a Lyme disease specialist.
Lyme Association of Greater Kansas City, Inc P.O. Box 25853 Overland Park, Kansas 66225 Hotline # (913) 438-L-Y-M-E
You are very lucky to have some good LLMD's close by.
Posts: 339 | From nowhere | Registered: May 2007
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Annie C
Frequent Contributor (1K+ posts)
Member # 14
posted
I have but one info. Make Sure that the Test you have done is the 100% accurate. That test is the "Q-RiBb Test" Just google it to find out how and where. I hope she doesn't but IF she does Get Meds Started. After All Pres. Bush took drugs. hehehehehe. Oh I almost forgot, my Lyme Dr. IS IN KANSAS CITY KS. I NEED TO ASK HIM FIRST, BEFORE I GIVE YOU HIS NAME. SO HANG TIGHT IF NOT HIM HE KNOWS OTHERS.
Plz let us know the results
-------------------- May God Bless you every day. And Never say never and do not give up no matter what. We need you to help others. Posts: 1288 | From Tetons Wyoming | Registered: Oct 2000
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Wow, apparently didn't setup email notifications for this post and didn't know how to find it again until just now. I have several questions and comments for people when I have more time, but for now -
AnnieC - Please let me know the name and number of your lyme doctor in KCK if at all possible. I wasn't aware there was one in KCK. We found one, but I'd like a second opinion. I'm not 100% satisfied with our doctor at this point.
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