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I live in Eastern Ohio 1 hour from Pittsburgh or 2 hours from Columbus Ohio. My neurologist does not believe in Lyme. The doctor who ordered the Western blot only did so because I insisted. I'm concerned it won't be read correctly. I need someone to interpret the results and possible treatment. Marie
Posts: 3 | From St Clairsville Ohio | Registered: May 2016
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TF
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Welcome to LymeNet! When you get the results, be sure to get a copy and keep it in your files. Show us the exact results and we will interpret it for you.
However, just know that many people with lyme disease get negative tests. The lyme tests aren't that reliable. So, even if you get a negative, you could still have lyme. If you get a positive, you definitely have lyme.
A good lyme doctor knows the tests aren't very good so they go by your symptoms. It is expensive to go to a good lyme doctor. But, that is the only way you will get rid of this disease.
And, neurologists definitely don't believe in lyme. The one I saw yelled at me that I didn't have lyme, even though abnormalities showed up on my brain scan and I had a positive lyme test!
I am originally from Pittsburgh, so I know a little about the lyme doctors they have there. We have better lyme doctors in the D.C. area. So, if you conclude that you DO have lyme, and if you are willing to travel to get good treatment, let me know and I will give you the name that I recommend to folks on the east coast.
At least half of all lyme patients go out of state for their care. The lyme docs do monthly telephone appointments with out-of-state patients so you are not traveling to see them every month. (You generally see a lyme specialist once per month.)
If you have not yet read the Burrascano Lyme Treatment Guidelines, I strongly suggest that you do. They are here:
Lyme Borreliosis (LB) is diagnosed clinically, as no currently available test, no matter the source or type, is definitive in ruling in or ruling out infection with these pathogens, or whether these infections are responsible for the patient's symptoms. The entire clinical picture must be taken into account, including a search for concurrent conditions and alternate diagnoses, and other reasons for some of the presenting complaints. Often, much of the diagnostic process in late, disseminated Lyme involves ruling out other illnesses and defining the extent of damage that might require separate evaluation and treatment.
Consideration should be given to tick exposure, rashes (even atypical ones), evolution of typical symptoms in a previously asymptomatic individual, and results of tests for tick-borne pathogens. Another very important factor is response to treatment- presence or absence of Jarisch Herxheimer-like reactions, the classic four-week cycle of waxing and waning of symptoms, and improvement with therapy." (page 7)
Look at pages 9-10 and see how many symptoms you have. Make a list of all of your symptoms and take that to your first lyme doctor appointment. This is very important, so be as complete as possible with the symptom list.
As the quote above says, if the lyme specialist thinks you have lyme, he will give you a course of antibiotics to treat lyme to see how you react. That will seal the diagnosis.
Many doctors say they treat lyme. But, you want to go to someone who specializes in lyme, meaning that his entire practice is lyme disease or almost the entire practice. That is how a doc develops expertise in curing this very difficult disease.
You can also contact the Ohio and Pa lyme support groups that are nearest to you. They may be able to give you names of good lyme specialists. See Support Groups on the left side of this page.
There is also a person who visits this site who helps those in Ohio. Hopefully, she will be along shortly. Here is a previous request for a doctor in Ohio, and she answered it:
We do not name the doctors publicly because then the majority doctors will try to get their licenses taken away. So, we try to protect our lyme specialists this way. You would be surprised who reads these public messages. They are not just lyme patients!
So, go to the Ohio thread and click on Ann-Ohio's name and you can write to her PRIVATELY about who she recommends in OH. That's how you get names.
***edited cities of LLMD's***
The main thing you can do for yourself now is to become educated about this disease by STUDYING the Burrascano Guidelines. If you do, you will then understand much of what the lyme specialist is talking about. And, you will be able to evaluate his treatment of you. That means, compare it to what Burrascano says good lyme treatment is (meds, dosages, combinations of meds, length of time treating, etc.)
If you want the names of the docs in Hermitage, let me know and I will send them to you.
The main message is that if you have lyme, be willing to travel to see a good lyme specialist. Some states have nobody good. Certainly most cities don't have anybody good.
Contact the lyme support groups as I advised you above. It may take time to hear back from them, but do it. The more info you get about a lyme doc before you spend the big bucks on them, the better. It will save you time and money and effort getting well.
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.
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