posted
Hello. Was wondering if you could please provide me with LLDs in the VA area. For me, I am in need of a neurologist, rheumatologist, and infectious disease specialist. I would also like to get a LLD pediatrician for my child, to rule out Lyme.
I was bitten by a tick several years ago and tested negative. I continued having increased symptoms, and then tested positive last spring. I did oral Amoxicillin for 1 month. It has not seemed to help.
I have had an increased muscle enzyme test, myositis, terrible headaches, eye problems, stiff neck, painful joints, numbness, gastro issues, muscle tightening, etc.
Thanks for your help!
Posts: 2 | From VA | Registered: Nov 2013
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
You really don't want an infectious disease (ID) specialist. They will all tell you that one month of amoxi cured you of lyme and now you have "post lyme syndrome." This is the term the IDSA (Infectious Diseases Society of America) created to explain why people are still sick after their 1 month of treatment.
You see, all ID doctors look to the IDSA for guidance on how to treat lyme disease. The IDSA issued lyme treatment guidelines a number of years ago. The guidelines say that 30 days of meds are all you need. So, forget them.
You need a lyme doctor. This is generally an internist who got lyme disease himself and found out that 30 days of meds don't cure lyme. He researched for himself and learned that it takes long-term antibiotic treatment using high doses and combinations of antibiotics together to get rid of this horrendous illness.
The best document to read to learn how lyme is successfully treated is the Burrascano LYme Treatment Guidelines found here:
I suggest you STUDY this document to get your education on this disease. All of your symptoms are from chronic lyme disease.
A neurologist is generally as bad as an ID doctor. They will treat you like a mental case because they also believe in the IDSA lyme treatment guidelines. Per them, you are cured. You just have to wait for your body to settle down now that you have gotten treated for lyme!
You don't need a rheumatologist either because it is lyme causing you to have lyme arthritis. All you need is a great lyme doctor.
Contact the Support Groups in your state (see Support Groups on left side of page) to get the names of doctors who treat lyme disease.
If you are in Northern Va., there are quite a few lyme doctors in that area, but they all treat differently. If you want high-dose combinations of antibiotics, you have to ask if the doctor does that before you make an appointment. Many in NoVa treat with very, very low doses of antibiotics and use only one med at a time. These "low and slow" doctors help people but generally can't get rid of lyme for anybody.
A Boston TV station did a show on the lyme disease controversy a few years ago. Here is the Boston Chronicle video on YouTube:
I suggest you watch this video a few times. It explains the lyme disease controversy and the role the IDSA plays in making it difficult for a person to get good lyme treatment.
I suggest you really educate yourself about this disease before chosing a doctor to treat you. That will save you from wasting a lot of money and time. These lyme doctors are very expensive, especially for the first appointment. So, if you realize your first doctor is not good, you will be paying for another very expensive first appointment with another doctor when you change doctors. You don't want to have to pay that high cost more often than is necessary. So, do your research.
Pediatric lyme doctors are really few and far between. The best one in your area is currently not taking new patients.
Please know that no lyme test is reliable enough to say, "this child has lyme or this child doesn't have lyme." We all wish it were that easy, but it isn't.
See this quote from 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. 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)
Notice that "Another very important factor is response to treatment..." Even in the year 2013, one of the ways a doctor confirms a suspicion of lyme disease is by giving the patient a trial course of lyme treatment and seeing the reaction of the patient. They generally will have a herxheimer reaction at the start and every 4 weeks after.
Why not tell us what part of Virginia you are in so we can help you more.
And, welcome to LYmeNet!
Posts: 9931 | From Maryland | Registered: Dec 2007
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