I was diagnosed with Crohn's about 2 years ago. They put me on Remicade for the Crohns and Psoriasis, about 2 1/2 months ago my joints in my knees and shoulders started hurting me really bad. I talked to a friend of mine in Michigan and was telling him about my symptoms and he told me about his brother in law having Lyme and that my symptoms were the same. In the meantime I went to the Mayo Clinic and seen a GI dr, told him that I would like to be tested for Lyme Diesease. He looked at my medical records and assured me that I had Crohn's and that I had a reaction to the Remicade, then put me on Prednisone. I returned home 2 weeks ago and went to my dermotoligist, he ran a blood test and I begged him to do the Lyme test. He told me there is no way I had LD but he ran the test as I asked. He called me yesterday and informed me I had tested positive for LD.
Finally I had found someone to listen to me. Now I need to find a good LLMD in the Indy area.
Posts: 13 | From Indiana | Registered: Feb 2011
| IP: Logged |
sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Yes, much of us have been given the run-around.
Prednisone is terrible for Lyme patients.
Have you posted in seeking a doctor?
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
steve1906
Frequent Contributor (1K+ posts)
Member # 16206
posted
Welcome to the group, we've all been there...
Go to seeking a doctor like sixgoofykids said.
Keep on posting, and keep us updated.
-------------------- Everything I say is just my opinion! Posts: 3529 | From Massachusetts Boston Area | Registered: Jul 2008
| IP: Logged |
BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
Do not trust doctors who don't take your concerns and observations seriously. They either have enormous egos, conflicts of interest, or both.
posted
I sent her info for Indiana doctors... and replied to her in Seeking.
j.ro
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
| IP: Logged |
tick battler
Frequent Contributor (1K+ posts)
Member # 21113
posted
Lyme/parasites/coinfections can cause gut symptoms. A big part of the battle is getting a diagnosis...so that hurdle is over...hope you can get in to see a good LLMD or naturaopathic doctor soon. There are many different approaches and everyone responds differently to different treatments. Just keep an open mind in this journey and you will get better!
Good luck to you.
tickbattler
tickbattler
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
| IP: Logged |
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
OMG does Mayo sound like a real bunch of ###hol##. The stories I hear just make me sick. I agree find a good LLMD.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
| IP: Logged |
posted
Yeah, hold the MAYO. My nephew is thinking of going there and I tried to discourage him. My neighbors' son went there and was told to see a shrink and get some good pain management. He finally went to an LLMD and got the Lyme diagnosis.
I would urge you to SLAM all the docs who misdiagnosed you on the various doctor rating sites like vitals.com, etc. These jerks need to be held accountable for their arrogance and ignorance.
-------------------- Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that. Posts: 765 | From nw ct | Registered: Sep 2008
| IP: Logged |
posted
Also, if you can, you would be wise to avoid any more steroids, as they are completely contraindicated for Lyme disease.
Posts: 340 | From san francisco, ca | Registered: Nov 2010
| 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!
![[Frown]](frown.gif)
j.ro
Printer-friendly view of this topic