Been thinking about this and thought I would see if anyone else may have a thought about this.
How do you really know it's Lyme Disease?
Since the tests are unreliable and symptoms mimic so many other diseases like Fibromyalgia.
Especially Fibromyalgia and since there is no blood test for that either, how do you know?
Also what defines a LLMD? Is a LLMD a dr. that treats Lyme? Or are there other characteristics that make up a LLMD?
Posted by Paul Mall (Member # 27581) on :
the best way to know is if you have symptoms of lyme see how you respond to antibiotics... if you herx and then feel better. you know the antibiotics are working
Paul
Posted by sixgoofykids (Member # 11141) on :
I had fibromyalgia. HAD. It is a cluster of symptoms with an unknown origin. If you have Lyme, it can be caused by the Lyme. Don't think of fibro as a disease in its own right, it is caused by something. Now that my Lyme is gone, no more fibro.
Posted by kimmie (Member # 25547) on :
If you are lucky enough to test positive..the chance of a false positive is 1-3%
In the case of seronegative lyme disease, 36% will convert to positive lyme titers after successfull antibiotic treatment. (Once the body is then producing enough antibodies to be detected).
For seornegative lyme, their are other clues to look for...herx reactions with ABX treatment, low CD57 counts and high C4A numbers indicating high toxin load. The diagnsosis is strickly clinical since no test is 100% accurate.
Posted by Keebler (Member # 12673) on :
- Fibromyalgia IS lyme, or some other similar stealth infection. Really, there is no such thing as Fibromyalgia. It's a made up name for a collection of symptoms.
Nearly every person diagnosed with lyme has first been diagnosed with "Fibromyalgia" and had band aid pills pushed on them that did not work.
With lyme (or other infection) treatment and nutritional support, "Fibromyalgia" disappears. That speaks volume. -
Posted by Scrambled_brain (Member # 3071) on :
quote:Originally posted by Paul Mall: the best way to know is if you have symptoms of lyme see how you respond to antibiotics... if you herx and then feel better. you know the antibiotics are working
Paul
I generally think this is true. Herx = infection. However, I think you could have a different bacterial infection (not lyme) and still herx. Also, I've herxed on antibiotics for many years with little improvement. It is amazing how little research goes into understanding chronic infections, the herx reaction and how it relates to the immune system, etc. But we all know that.
Posted by Keebler (Member # 12673) on :
- Summer,
Some of the articles at your previous thread address that question: how do you know? Well, the symptoms you posted at your other thread are certainly on the list of lyme symptoms.
First, though, get an ILADS-educated LLMD for proper assessment of the full range of possible tick-borne and other chronic stealth infections, etc.
More detail here in links that you can copy and paste to your computer file. As you see an ID doctor tomorrow, be sure to read all about the best testing methods and best labs - and to avoid steroids:
Topic: Have Dr Appt. Wednesday -
Posted by Keebler (Member # 12673) on :
- You asked " . . . Also what defines a LLMD? Is a LLMD a dr. that treats Lyme? Or are there other characteristics that make up a LLMD? . . ."
A ID doctor is NOT a LL MD, automatically. They may say they treat lyme but 99% of the time they follow the IDSA.
A true LLMD is ILADS-educated, in that they have read ILADS' articles, presentations, attended seminars and learned more than the IDSA has about all tick-borne infections.
Now, some LLMDs may vary in treatment methods but they know the basic science of the spirochete, etc. as approached by ILADS members.
From your other thread, but for easier finding: ------------------
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" -
Posted by timaca (Member # 6911) on :
summer~ First make sure your PCP has ruled out other possible causes for your illness. If all those tests come back fine, then consider infectious pathogens. If you have a history of a tick bite, look first at tick borne pathogens. If you don't then you can still consider tick borne pathogens, but also consider other pathogens such as HHV-6 (see www.hhv-6foundation.org and get tested at Focus labs) or enteroviruses (see: www.enterovirusfoundation.org and get tested at ARUP lab). You cannot tell by symptoms whether you are dealing with a chronic bacterial or a chronic viral infection.
Someday soon there will be a website that explains all this. It's not quite ready yet...I look forward to the day when it will be online.
Best, Timaca
Posted by summer22 (Member # 27913) on :
Okay. Thanks Everyone!
I've been researching my symptoms and that's how I came across Fibromyalgia.
I went on Igenex lab website and was trying to figure out how to test from that lab.
How do you request to be tested from there?
Just a little while ago I had an attack of pain all on my left side. My hand, arm, elbow, and knee.
Posted by sixgoofykids (Member # 11141) on :
My pain was all left-sided.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by kimmie: [QB] If you are lucky enough to test positive..the chance of a false positive is 1-3%
In the case of seronegative lyme disease, 36% will convert to positive lyme titers after successfull antibiotic treatment. (Once the body is then producing enough antibodies to be detected).
For seornegative lyme, their are other clues to look for...herx reactions with ABX treatment, low CD57 counts and high C4A numbers indicating high toxin load. The diagnsosis is strictly clinical since no test is 100% accurate.
Yes.... no worries if you are positive. Find a good LLMD since Lyme is a clinical diagnosis.
You can order a test KIT from Igenex for free. Then you must find a dr willing to sign off on it. When you send in the bloodwork, then you pay appox $200.
Test #188 and 189 .. is what you need.
www.igenex.com Posted by erikjh1972 (Member # 20964) on :
the tick i found on me gave it away.
Posted by LSG Scott (Member # 21624) on :
Keebler is right in saying
"Fibromyalgia IS lyme, or some other similar stealth infection. Really, there is no such thing as Fibromyalgia. It's a made up name for a collection of symptoms".
the name Fibromyalgia was even first coined by Lyme feo Allen Steer at least thats what i have heard.
it is no different then people losing thier sight from Lyme and then haveing Steer and company calling it the cond. known as "Noseeosis"
HA No-see-osis, see how easy it is to make up this crap