I am desperately searching for a LLMD in the STL Metro area. I was tested yesterday so I do not have my results, but I have high suspicions that I have Chronic Lyme and possibly co infections.
I was diagnosed with Rheumatoid Arthritis in 2011 and have been on just about every infusion and shot available for the treatment of RA and not one has improved my symptoms.
I have progressively gotten worse and what finally took me in a new direction was severe migraines and most recently a stiff neck, ringing in the ears, brain fog, etc, etc....just an overall unwell feeling and mentally deep down I know something just isn't right.
Oh how could I forget the fatigue, more like exhaustion to the point of not being able to function or hold a conversation. Thanks in advance for any help. I'm at the very end of my rope.
[ 08-04-2016, 05:06 AM: Message edited by: MyOwnAdvocate ]
Posted by hopingandpraying (Member # 9256) on :
Welcome to Lymenet! PM sent for MO & IN.
The first piece of advice I have for you is: tie a knot on the end of your rope and hang on!
You need to be evaluated and treated by a Lyme-literate doctor (LLMD). Non LLMDs have no clue about this horrible disease or its complex treatment!
A LLMD is one who has treated Lyme disease and the co-infections which come with it for many years and has gotten patients well. A good one will follow Dr. B's Guidelines, the "gold standard" for Lyme treatment.
Btw - I know you are new to Lymenet, but please break up your posts into 2-3 sentence paragraphs, as there are people on Lymenet who cannot read large blocks of text due to neurological problems from Lyme.
To do this click the pencil/paper icon, make your changes, then click "Edit Post". Thanks.
Posted by Tincup (Member # 5829) on :
So sorry to hear of all the symptoms. Glad you are becoming your own advocate!
If you go to www.MarylandLyme.org you'll see a doctor referral link on the menu to your left. That will give you some options for all states that have treating health care professionals.
It also has a listing for labs, support groups, holistic dentists, ways to find natural doctors, chiropractors, etc.
Hope that helps you in your search. Good luck and feel better soon!
Posted by MyOwnAdvocate (Member # 48521) on :
Thank you Tincup and hopingandpraying for your responses I appreciate your help greatly.
Posted by Tincup (Member # 5829) on :
You are very welcome! Hope you see some good results real soon.
Posted by MyOwnAdvocate (Member # 48521) on :
Well all my test results for came back negative. Well I guess they would when I was tested for one thing Lyme. I was also told Lyme is not common in my area.
Funny how since day 3 of Doxycycline my brain fog lifted and I already started seeing improvements overall.
This is day 7 on 100mg in am and pm and I feel like I have a bad cold which seems to be sign of herxing so I will stick it out.
I did manage to get my GP to prescribe another two weeks of Doxycycline which I know will be nowhere near enough.
I told him that I'm trying to get into a LLMD and was pretty much laughed at. He even asked me if I'm depressed and asked if I want some medication for depression. As soon as I got to my car I lost it and started bawling my eyes out.
1) if would have even looked at my chart he would have know I'm already on an anti-depressant and 2) I've been sick and feeling like crap for years so yes I'm depressed, but only because I want my life back.
My next step is to get in to an infectious disease specialist that has at least some knowledge of what I'm going through. Hopefully I can continue some form of treatment until I see the LLMD (I'm on a wait list with a confirmed appt in January)
Posted by MyOwnAdvocate (Member # 48521) on :
Forgot to mention that the same day I was tested for Lyme my doctor ordered a Neck X Ray and the results were "Neck Arthristis"
I was diagnosed with Rheumatoid Arthritis in 2011 so I guess the doctor thinks everything I'm experiencing is RA related. I have heard that there are doctors out there that use an antibiotic protocol for RA so maybe that is why I am experiencing improved symptoms with antibiotics.
In my heart I know I have some sort of Chronic Infections that have been misdiagnosed for years.
![[group hug]](graemlins/grouphug.gif)