My symptoms started in November 2016 - intense headache along back of my head/neck, diagnosed as occipital neuralgia. A week later I had a sudden onset of floaters in my vision.
Have developed muscle fasciculations and one side of face droops (not significantly). Also developed palpitations and incredibly fast heart rate. I just feel sick.
I've seen neurologists, a neuro-ophthalmologist, cardiologist, hematologist/oncologist. At this point I'm just terrified I have early symptoms of ALS.
I had an EMG done two weeks ago and the neurologist said there were "only benign fasciculations. Tested negative on Western Blot in March 2017. Any help would be greatly appreciated.
(breaking up the post for easier reading for many here)
[ 05-06-2017, 08:32 PM: Message edited by: Robin123 ]
Posted by hopingandpraying (Member # 9256) on :
Welcome to Lymenet! PM sent for PA & MD.
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, so you need to go where they are. At least half of all Lyme patients travel out-of-state to get treatment.None in DE.
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":
Read the books written by the top LLMD, Dr. H, titled, "Why Can't I Get Better?" and his new one, "How Can I Get Better?". They are an excellent source of information.
Also read "Cure Unknown" by Pamela Weintraub. Get it at your local library or buy it used on Amazon.
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 that, click the pencil/paper icon, make your changes, then click "Edit Post". Thanks.
Posted by TF (Member # 14183) on :
The Philly area doctors are not as good as the names I sent you.