posted
I live in Davis County Utah and have been experiencing symptoms for 11 years that can't be explained. I am hoping to find a doctor that can test for Lyme years after symptoms that have started. My neurologist doesn't think I have MS or Lyme based on zero lesions on my brain but I am not overly confident in my neurologist. I don't remember getting a tick bite but I go to the mountains often and have had nasty bug bites throughout my life so it could be possible. I am just looking for an answer. Thank you for your help.
Posts: 12 | From Utah | Registered: Jun 2017
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Take a look at this document. Pages 9 - 11 is a good list of lyme symptoms.
If it is lyme, you will get more symptoms as the years go by because lyme will continue to progress until adequately treated.
Make a very complete list of your symptoms in preparation for you first visit to a lyme doctor. Lyme tests aren't very reliable, so the list of symptoms is very important to help the doc make the diagnosis.
You do NOT need lesions on the brain to have lyme disease.
Until others come along, I suggest you contact the lyme support groups in your state and nearby states. See Support Groups on the left side of the page.
They can tell you where folks go for good diagnosis and treatment of lyme disease. You may have to travel.
And, be prepared for the appointment with a lyme specialist to be expensive. They generally do NOT take insurance.
I went undiagnosed for at least 10 years before a good endocrinologist thought of testing me for lyme. Still, I got rid of lyme by going to a doctor who followed the Burrascano Guidelines document above.
Then, I sent at least 5 of my friends to docs who followed this document and they also got rid of their disease.
Lyme is not easy to cure, so you have to find a doc with a lot of expertise in lyme to have a good chance of getting well. Spend a lot of time researching doctors. It is time well spent.
Many doctors treat lyme, but very few have ever cured anyone of it. You need to find a doctor who knows enough to cure people.
And, there is no set ABC treatment of lyme, so the doc is free to treat you however he wants. So, you really want to find out in advance HOW a doctor treats lyme before you spend time and money on him.
Burrascano says high-dose antibiotics taken in combination is what it generally takes to get rid of lyme. And, you need to be tested for the lyme coinfections and treated for all that you seem to have, based on symptoms.
Study the document and you will see what good lyme treatment looks like. With lyme, it really pays to be an educated patient.
Welcome to LymeNet! We will help you here all we can.
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.
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. Check 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 this click the pencil/paper icon, make your changes, then click "Edit Post". Thanks.
Posts: 9020 | From Illinois | Registered: May 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey there Answers Please!
I am sorry you've been ill so long and still don't have the answers you want.
If you go to www.MarylandLyme.org you will see DOCTOR REFERRALS on the menu to your left. That will take you to a site that have a few listed in your area.
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,
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