posted
Hello. First of all my thanks to the members and moderators as this is the best website on lyme disease that I have found. In reading through the forum I have seen that my mother's story is not unusual, which make me even sadder.
We believe that my mom got bit in 1993, in northern Michigan (northern lower pennisula, not the UP). She has had years of tests and a multitude of medications, she even had doctors at the University of Michigan Hospital tell her that she could not have lyme disease simply because she had not traveled outside of Michigan and there were no reported cases in Michigan (this was in 2001). She was finally diagnosed as having lyme in 2002, but it seems the doctors couldn't come up with very good treatments. Since 1993 she has been in and out of hospitals and doctors offices, but since 2002 she has been a regular at the hospital / Emergency Room / Doctor offices. One doctor puts her on numerous medications, then after months of no sign of improvement (or little improvement) she would change to a "lyme specialist" and they would take her off those and put her on numerous different medications. In 2006 she was actually diagnosed with ALL of these conditions: Myalgia & Myositis, Unspec Fibromyalgia, Chronic Fatigue Syndrome, hypothyroidism, GH deficiency, Adrenal Insufficiency, Unspecified Endocrine Disorder, Immune Disorder, Hyperlipidemia, Vitamin B12 Deficiency, Iron Deficiency Anemia, Migraine, Viral Syndrome, Nonorganic Sleep Disorder - Unspecified, Hashimoto's thyroiditis. The doctors hit her with numerous medications, IV's, shots, etc., and she actually felt better towards the end of 2006. Then they slowly decreased her meds/IV's, and by mid to late 2007 she seemed to be back where she started. Since then she has gone through another really big treatment of meds/IV's/etc - and her current doctor now has her stopping all meds to start over again. I have tried to get involved in this to help her and every time I do she has a new doctor or they are trying something new and they "promise" her a permanent recovery. My mom always tells me to wait to see if this works, and if not we can work together on it. Since 1993 my mother has gone from a self sufficient full time worker, to part-time, to early retirement (because of the fatigue). I would say it's safe to state that she has probably only driven her car 10 times in the last 8 years. My father drives her to her appointments and while he helps the best he can, I think he is very frustrated with this as well. My mom is now in her early 60's, and I want her to spend her retired years happy. I have her medical history that she has kept (a very good diary of her sickness and treatments). I am looking to find "the" expert to go to to get her recovered. Obviously I would like to see someone in or near Michigan, but at this point I do not care if they are outside of Michigan. I just don't know where to start, so any information that anyone may have would be greatly appreciated. Thank you for taking the time to read my rant
Bob
Posts: 1 | From Michigan | Registered: May 2009
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Hi Bob,
Welcome to lymenet!
Someone will be along to send you a list of LLMD's.
Your Mom's story is pretty typical.
I sure hope she gets an eval by a good LLMD and figures out what is really going on.
While you are waiting for the list of Dr's in your area, read through some of this info when you can.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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mbroderick
Frequent Contributor (1K+ posts)
Member # 5220
posted
Hi Bob,
Information is sent! Check your private messages by clicking on the flashing envelope above. Posts: 2097 | From PA | Registered: Jan 2004
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Siciliano
Frequent Contributor (1K+ posts)
Member # 15920
posted
Hi, Bob and welcome to our site. We're glad you came to us.
I have also sent you some information and hope your Mother will find the right Doctor and is soon on the road to recovery. Let us know if you need anything else.
-------------------- I'm sorry but I am no longer accepting any private messages due to my own battle with lyme. Posts: 3897 | From New Hampshire | Registered: Jun 2008
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Bob and welcome to our site. We're glad you came to us.
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