posted
Hi, so I was recently diagnosed with Lyme by a neurologist after my family doctor tested and said I only tested positive for 2 bands and it wasn't enough to be a full positive test and wouldn't start any treatment.
Knowing I got bit when I was 15, I am now 27 it's been 12 years I should have figured this would be the case.
Anyways 12 years and the neurologist thinks a 21 day run with a PICC line and antibiotics will be the magic cure, now I was born at night but it wasn't last night I did a lot of research over this weekend and it's going to take a lot longer than 21 day and some magic antibiotics to fix this.
I am in Somerset or fayette county pennsylvania. Prefer to stay kind of close if at all possible. Please help me out. I'm so overwhelmed.
[ 05-01-2017, 08:03 PM: Message edited by: Lymetoo ]
Posts: 2 | From PA | Registered: May 2017
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Good for you for knowing that 21 days of one IV antibiotic (which is what you will be offered) is not going to cure you of chronic lyme! Smart girl!
I have sent you a long message with names of doctors and info on each one.
Welcome to LymeNet! We will help you here all we can! You are NOT alone.
Please read and STUDY the Burrascano Lyme Treatment Guidelines found here:
There is no substitute for an educated patient when it comes to this disease. It will help you understand what the lyme specialist is saying, and you will also be able to evaluate any treatment any doctor wants to give you.
I had lyme (and babesiosis and bartonella) for at least 10 years before I was diagnosed. Still, I got rid of these horrendous diseases.
I went through 2 other docs who didn't know enough to cure me. Then, I chose a doctor who followed the Burrascano Guidelines. He did the trick for me.
So, do a lot of reading and studying before you pick your doctor. Many lyme patients know nothing when they pick their first doctor, so their first pick is not good. (My first TWO docs weren't very good picks--recommended to me by a lyme support group leader. I wasted 2 years taking antibiotics this way.)
So, it will save you lots of time and money if you study, study and then pick the best lyme specialist you can possibly afford. A doc who treats only lyme patients all day long is going to have a lot more expertise than a doc with a regular medical practice or one who specializes in 20 conditions, one of which is lyme.
Posts: 9931 | From Maryland | Registered: Dec 2007
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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. At least half of all Lyme patients travel out-of-state for their care.
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.
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. Thanks.
Posts: 8981 | From Illinois | Registered: May 2006
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