posted
Brief bio...about 6 years ago she started getting sick. Been diagnosed with fibromyalgia, chronic fatigue, and others. Has horrible hip pain and about 30 other symptons on the Lyme disease checklist.
Had a work up for MS...bunch of MRIs all negative and a spinal tap also just came back neg. I have been reading this board for a couple weeks and I really feel Lyme is what she has.
She seems to want to go to the Mayo Clinic instead of Dr. C in MO who I just set her up with an appointment. Any advice or words of encourangement I can relay to her??
posted
I have heard that the Mayo Clinic knows nothing about lyme. Your best bet is to see an LLMD, Dr. C can run the proper tests and know how to read them.
livinlyme
Frequent Contributor (1K+ posts)
Member # 3773
posted
quote:Originally posted by pab: When all is said and done, usually more is said than done.
Amen to that statement pab! Linda D
-------------------- "Hatred paralyzes life; love releases it. Hatred confuses life; love harmonizes it. Hatred darkens life; love illuminates it." Posts: 1389 | From who knows, who cares, but somewhere over the rainbow | Registered: Mar 2003
| IP: Logged |
posted
Mayo has an excellent reputation for health care, but unfortunately, when it comes to Lyme disease, there are too many tragic stories.
Since I've been on LymeNet, a significant number of people here have related their unfortunate experiences with NO diagnosis for Lyme disease at Mayo (and other prestigious medical institutions). Missing the diagnosis has delayed their treatment & in some cases caused problems with insurance at a later date.
When their illness was misdiagnosed (chronic fatigue, MS, ALS, fibromyalgia, etc), it was a label that was difficult to change. The insurance companies can be reluctant to pay for Lyme treatment if a "prestigious" institution has made a different diagnosis.
With Lyme disease, the misdiagnosis is frequently something that has no cure & no treatment. Lyme is a complex disease, but at least antibiotic treatment can give hope - if not a cure, then possibly remission & restoring quality of life.
I know a man here in South Carolina - loved to hunt & fish, has all the symptoms of Lyme, & went to Mayo.
They said he didn't have Lyme (which is definitely present in South Carolina), but instead they diagnosed him with an extremely rare syndrome that will be fatal. A conservative estimate of not more than 500 people in the US currently have this illness.
Info on this illness recommended 6 lab tests. #5 on the list is Lyme disease.
So, so sad.
My recommendation - If there is any possibility that she has Lyme disease, have an evaluation by a Lyme Literate Medical Dr. They treat hundreds of Lyme patients all the time.
Tell your wife to please keep the appt with Dr C in MO. If she does not have Lyme disease, he will look for the cause of her symptoms. His patients have so many positive things to say about him. You need a doctor who has lots of satisfied customers!!!
Posts: 4638 | From South Carolina | Registered: Mar 2001
| IP: Logged |
quote:Originally posted by cbb: Tell your wife to please keep the appt with Dr C in MO. If she does not have Lyme disease, he will look for the cause of her symptoms. His patients have so many positive things to say about him. You need a doctor who has lots of satisfied customers!!!
Ditto!! Please read carefully everything that cbb said!
I, too, have been on this board many years and have heard MANY horror stories of people who tried to get a diagnosis at Mayo.
One was told "we don't do Lyme." That sums it up pretty good.
We have lots of people here who were misdiagnosed with CFIDS and/or Fibromyalgia. I am one of them.
Please DRAG her to the apptm with Dr C if you have to! Neither of you will be disappointed.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
JillF
Frequent Contributor (1K+ posts)
Member # 5553
posted
I have been misdiagnosed w/Fibromyalgia, anxiety (by all 12 doctors), allergies, sleep apnea, rosacea and one doctor told me it could be MS (but never sent me for tests)
Go see the LLMD and see how your wife feels after the visit
My husband didn't show any interest in my Lyme disease until he started showing symptoms. He probably got Lyme disease from me - so keep that in mind also.
Posts: 1485 | From USA | Registered: Apr 2004
| IP: Logged |
posted
All newbys seem to go thru this phase. We think that the big name institutions will do it best. And maybe it works that way with some health problems, but not lyme.
Mayo gets discussed and cussed regularly. Can do a search in archives and pull up a few. Here is one you can print out for your wife. Maybe she will get the picture.
posted
Thanks everyone for your help. After explaining it all she feels better. I just want her to feel better!!! I'm sure you guys will see me here more often.
posted
The Mayo clinic is one of the WORST places to consider going. It has a terrible reputation for anything involving Lyme disease. Don't waste your time or money. I know several people who have gone there, been treated like they were crazy, taken off antibiotics, and put on antidepressants and painkillers, nothing but symptom control. Its horrible! Please email me and I will help get you to a real good Lyme doctor to rule it out, or get treatment and testing done CORRECTLY! email [email protected]
IP: Logged |
I'm glad to hear she will be seeing Dr. Crist. He is a great dr and makes you feel very comfortable. She won't regret seeing him.
I was also dx'd with CFS/FMS 16 years ago only to find out last Dec. that I have had lyme all along. I gave it to my daughter and I suspect I gave it to my husband. All three of us are in treatment. We were just so glad to have an answer to our problems.
Glad you found this site. It's very helpful and I don't know what I would have done without it. Hope your wife gets an answer soon. It's good that she has a supportive husband to help her through this. Mine is very helpful but some aren't so fortunate.
Take care, Sapphire101
Posts: 495 | From KY USA | Registered: Dec 2004
| IP: Logged |
posted
My LLMD just suggested that I go to the Mayo Clinic for diagnosis and dismissed me from further treatment as I did not respond to 1 1/2 years of oral abx-Biaxin/Cipro. No changes in abx during treatment. My Western Blot is totally negative as our auto-immune tests.
Posts: 509 | From southern new jersey | Registered: May 2003
| IP: Logged |
Katie G.
Unregistered
posted
Chip, I know your wife has an appointment with an LLMD. I just wanted to echo what a lot of people said and also add something else:
After years of feeling bad, I finally had a very reknowned surgeon in my area test me for Lyme. It was negative.
I'd read up on Lyme by then, though, and found out the tests were often unreliable/ Still, Chip, it was very powerful to have this real respected doctor telling me I didn't have Lyme. It made me question my own feelings.
I had already made an apointment with a Lyme lit. doc, thankfully. She spent a lot of time with me and felt sure I had Lyme. The tests she had done confirmed it.
I am just so glad I didn't listen to that mainstream doc. As far as Mayo, I've heard very negative things about them re Lyme.
quote:Originally posted by marie: No changes in abx during treatment. My Western Blot is totally negative as our auto-immune tests.
That is awful!! You need to go through treatment for co-infections before submitting yourself [and your life] to Mayo. UGH.
cgooge...Very glad your wife is willing to give DR C a try!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
lymebrat
Frequent Contributor (1K+ posts)
Member # 3208
posted
Hello,
Welcome to LymeNet! There are alot of wonderful people here to help you. I am sorry to hear about your wife. Unfortunately her story is one many of us can relate to.
I hope she will see Dr.C and that she will be on the road to recovery very soon.
God Bless,
~LymeBrat
Posts: 3154 | From NH , USA | Registered: Oct 2002
| IP: Logged |
quote:Originally posted by imanurse: They told me to see a behavior psychologist so I could learn how to stop having seizures - which they told me many patients who are being abused perform as a cry for help when they need attention!!!!!! Quack Quack!!
HOLD the MAYO for me.
IMA...that's pitiful, isn't it!!?? Makes you want to bang your head against the wall!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
See private message...
Andie
Posts: 2549 | From never never land | Registered: May 2005
| IP: Logged |
Linda LD
Frequent Contributor (1K+ posts)
Member # 6663
posted
A friend at my church had her best friend die of Lyme--she was being treated at Mayo clinic...
Posts: 1171 | From Knoxville, TN US | Registered: Dec 2004
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Smile]](smile.gif)
![[hi]](graemlins/hi.gif)
CORRECTLY! email ![[Cool]](cool.gif)
![[Mad]](mad.gif)
Makes you want to bang your head against the wall! 
Printer-friendly view of this topic