posted
Hi, I'm new to this forum, and hoping someone can help me. Have had 1/2 a dozen tics on me in the last few years, but last June found one that had been on me for at least 4 days. It was in an inconspicuous area, and much smaller than other ones I have had. The last several months sound almost identical to others I have read here, in terms of symptoms, tests, dead ends. A rheumatologist did send me for a lyme test...the inital assay test only...and it was negative. I have read that the test is not reliable, and that a Western blot should be performed. I have two questions. Any advice on if I should indeed have the Western blot, even though the other (Elisa???) was negative, and if so, are there labs that will do it without me having to have a doctor's request??? Thanks to all.
Posts: 117 | From Illinois | Registered: Apr 2008
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posted
Find a real good LLMD and you will be all set. He will be your signature that you will most likely need from any good testing lab. Most people here use Igenex or Fry labs.
What ever you do don't wait. it can only get worse with out help!!!
posted
Thank you Paul. I am a part of the wonderful world of HMO's. Any advice on midwest doc's??
Posts: 117 | From Illinois | Registered: Apr 2008
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The harder you work the luckier you get! Posts: 965 | From Nebraska Cornhuskers fan in Massachusetts | Registered: Dec 2007
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daise
Unregistered
posted
Hello havefaith377,
Welcome!
That you have had tick bites does not mean you have Lyme disease.
Even when one's been on you for 4 days: pathogens can be transmitted fairly quickly, if there are pathogens to be transmitted.
However, you've had signs and symptoms since your tick bite in June. The overwhelming majority of conventional doctors are of no use, and you seem to have had a taste of their nightmare.
I'm sorry you've been treated badly. That's par for Lyme patients.
I'm sorry to say, the Lyme Titers test (ELISA) is a bogus test. It's used by insurance companies and ducks to deny treatment.
There's a name for docs who hurt people: ducks. Quack!
The western blot is only good if it's sent to IgeneX in Palo Alto, CA. Even then, only about 40% test positive--the other 60% actually DO have Lyme disease.
The CD57 count is a SCREENER for Lyme diagnosis and must be sent to LabCorp Lab in Dallas, TX.
Some use the CD57 count after an extended long antibiotics course and say it doesn't work for that. Some say it does, for them.
There is a lab in Scottsdale, AZ called Fry that offers testing. Some say it's more accurate than western blot. I don't know.
That's why Lyme disease is a clinical diagnosis, made by an LLMD (Lyme-literate MD)who is also an ILADS (International Lyme and Associated Diseases Society) doctor.
Any doctor can say they are an LLMD. Some of those say that and then diagnose everyone with Lyme, whether they have it or not, because they want your money.
IDSA is a so-called "professional" organization representing your local infectious disease doctors.
IDSA ducks lie when they say chronic Lyme Disease does not exist: it is used to deny us treatment. They will belittle you, but for a very, very small number.
These ducks give a few weeks of doxycycline--at best. That is never enough, even in the early stages--and they know it.
The CDC (Centers for Disease Control) is made up of IDSA ducks.
ILADS are our hero doctors. At risk to losing their license to practice, they treat us anyway.
It's all about profits over patients, by some insurance companies.
Also by some drug makers, like the painkiller, statin and antidepressant superindustries. If we are healed, they lose profits.
A book that helped me, because it covers a lot of things to know in Lymeland, is Coping With Lyme Disease, by Denise Lang and Kenneth Liegner MD.
Maybe it's at your library.
Go to www.ILADS.org, click on "Treatment Guidelines" on the left menu. That will bring you to Dr. Burrascano's 33 pages of tips for 2005. All essential reading.
Excellent new books for understanding we ill Lyme patients are It's All In Your Head, Books 1 & 2, by PJ Langhoff.
You are welcome to post under the forum for seeking doctors. One or more of us will send you a private message.
I encourage you to make contact with your local support group: Go to the top of any page, to the leafy menu on the left and click "Support Groups."
Compare notes to find a good doctor!
I'm not saying you have Lyme. However, you see yourself, in us. GO!
You are welcome to come back and post questions. You an also go to near the top of any page. See where it says, "search?" You can search any topic.
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The fact that you had tick bites is diagnosis enough! You don't need positive test, if you had tick bites! I hope you realize that testing makes no sense. Lyme disease is a clinical diagnosis, and the lab data is supposed to be used as a supportive measure to support the diagnosis only. A negative test does NOT rule out Lyme. You should have been put on 400 mg of Doxycycline the exact day you found the tick bites! Don't wait another day, and don't settle for inadequate doses like 200 mg Doxy per day, that's not enough! Educate yourself please!!!
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posted
Thank you all for your comments. I am doing my darndest to get a diagnosis/treatment...I will keep you posted. I am very glad that I found this site!
Posts: 117 | From Illinois | Registered: Apr 2008
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