posted
I am looking for a Lyme disease literate doctor near DeLand Florida. I went to Mayo Clinic in Jacksonville to find out what is wrong, spent a ton and still have no diagnosis. They ran a Lyme disease test, but just came back saying negative. I wan't even able to get the results showing the titer levels. I want to make sure this isn't what is causing all my problems. Right now the diagnosis is fibromyalgia (but it has been auto immune, myeloma, parasthesia, etc.)
Posts: 1 | From Pierson, Florida | Registered: Feb 2014
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I sent you a name.
I want you to know that the fibro diagnosis is often lyme disease. The lyme doctor who cured me had a fibro diagnosis for years. He finally got tested for lyme and he had lyme. He treated himself and now he has been cured of his "fibro" for at least 15 years.
In addition, he told me that he was able to help many fibro patients prior to learning that it was lyme. He then tested all of his fibro patients for lyme. 100% of them were positive for lyme! So, he treated them all and they ALL got rid of their fibro.
Mayo Clinic is NOT the place for a person with lyme disease to go. They just do NOT believe in lyme disease. So, what happened to you is typical.
It is great that you found LymeNet. Welcome! We will help you here all we can.
If you have not yet done so, I strongly suggest that you read and STUDY the Burrascano Lyme Treatment Guidelines found here:
Especially look at pages 9-10 where he lists common lyme symptoms. To prepare for your first apppointment with the lyme specialist, make a very complete list of all of your symptoms.
Pages 9-10 can help you do this. Lyme tests are not reliable, so the doctor relies on symptoms and a course of lyme treatment to help make the diagnosis. Read it here in Burrascano:
"DIAGNOSTIC HINTS 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. . .
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)
Notice the last sentence of the quote. Response to treatment is an important factor in making the lyme diagnosis. So, get to a good lyme doctor and see what happens!!!
Once you see the list of lyme symptoms, try to determine how many years ago your symptoms started.
I never saw an attached tick or got a bulls eye rash. So, in cases like that, it takes an educated patient to determine when they likely contracted this horrendous disease.
The smartest thing you can do for yourself if it is lyme disease is to get the very best lyme doctor you can afford. If a nearby doctor can't do it for you, then travel out of state. At least half of all lyme patients go out of state for their treatment. The doc is the key to getting rid of this disease. Can't emphasize that enough.
Many doctors treat lyme disease, but only a very few know enough to get rid of it for a person. I know a few of these doctors.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
I am also in Volusia County, FL.. I know that this is an old post, but I am beginning to believe that LD is a real possibility for myself... If either of you can help me out with a doctor or maybe the current state of fairhairedfury, and if any treatment or help was found..
Posts: 1 | From Volusia, Fl | Registered: Jul 2016
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey in Volusia County!
Sorry to hear you have these concerns about yourself. Good you are doing some investigating.
If you go to www.FloridaLyme.org and look under "Doctor Referrals" (menu to your left) you will find a site with doctor's contact information for the entire USA, including information on alternative doctors, labs and support groups.
If you type in the word Skype or phone in the upper right side search bar on the doctor referral site it should bring up some results.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Here is a link to an article published recently not too far from your area. If you scroll down the page a bit there is a LONG list of some of the TBD's (tick borne diseases) that are known to be there.
*Standard lab tests are only designed to detect exposure to Borrelia burgdorferi and those tests miss up to 75% of people who have the Borrelia burgdorferi strain of Lyme disease.
posted
Did you ever find a good Lyme disease doctor in Florida? I too have been looking for one because I am having symptoms and being told possible ms. I am worried, confused, and don't know where to turn. I have been bit by many ticks when younger on long island and possibly some here as well. We used to walk our dogs in the woods. As I think back I realize my symptoms may have started long ago. Please help.
Posts: 1 | From Palm Bay, Fl | Registered: Jul 2016
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I don't believe there are any good lyme specialists in Florida anymore.
The one I used to recommend retired 2 years ago.
If you are willing to travel to the D.C. area, I can give you the name of a good lyme doc who can see you quickly.
He will do telephone appointments monthly so you only have to come in person once every 3 months. Let me know if you want the name.
Once you go south of Washington, D.C. there are few to no good lyme specialists unfortunately.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey Kim,
Sorry to hear you are feeling so badly! Long Island does have bunches of ticks, so that is very possible.
You said.. "We used to walk our dogs in the woods."
Interesting. My Godmother would "let me" go with her on her 5 mile a day walks on Long Island with her and the dogs too. Always had fun!
Just tonight I updated the "Lyme Misdiagnosed as MS" pages at this link. It may be of interest to you.
posted
"Trying to Figure This Out" and "Kimberly Bennett" - Welcome to Lymenet! PM sent for FL.
Btw - I know you are both new to Lymenet, but you should each write a new post instead of adding on to an existing one, because most don't re-read old posts (and this is a very old one!). That way, more people will see them and respond.
Also, 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.
Kimberly Bennett - you should not use your real name (if it actually is your real name), because this is a public forum with all sorts of people on it. Read this link about it:
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The
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