I have been sick for at least two years. Symptoms include nervous system involvement, cognitive dysfunction, motor weakness, and fatigue. Getting worse everyday.
Been to PCP, rheumatologists, neurologist, and others- tons of blood work, mri, xrays, no diagnosis or clue.
Lyme tests have been negative, but desperate!
Thank you for any help you can provide!
Paddy (not my real name!)
[ 07-23-2016, 08:13 PM: Message edited by: Robin123 ]
Posted by hopingandpraying (Member # 9256) on :
Welcome to Lymenet! PM sent for PA & MD.
You should add "northeast PA" in your title, so people will know specifically where you are looking. To do this, click the pencil/paper icon, make your changes, then click "Edit Post".
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.
Unfortunately, LLMDs are far and few between. You need to go where they are.
Also most LLMDs do not accept insurance due to the politics surrounding this horrible disease. Read poster TF's explanation, "Why Lyme Doctors Don't Take Insurance":
If you scroll down in the link Lymetoo has provided here, you'll see the link about 27 reasons why you might test negative even though you may have Lyme. If so, Lyme doctors treat clinically, based on history and symptoms.
Sometimes someone's tests turn positive after some treatment, when their immune system is strong enough to mount a defense.
Posted by Tincup (Member # 5829) on :
Hey PaddyM not my real name. ~smile~
Sorry you are feeling so poorly. Bless your heart. It's time, past time, to get to the bottom of this situation!
If you go to www.MarylandLyme.org you will see a doctor referral section on the menu to your left. That will give you contact information for Lyme treating traditional, natural and other kinds of health care providers from all states that have them.
There is also the SE PA Lyme Disease Association that has great speakers and programs on Lyme disease. They also give referrals. You can reach them by going to this link and scrolling down to the "Mason Dixon" listings.
I am not familiar with where you are located in comparison to the other PA groups, but they are also listed on the link above and do good work helping people.
Hope this gives you a good start on getting some answers. Take care of you!
Posted by me (Member # 45475) on :
![[Smile]](smile.gif)