Why is it so hard for doctors to determine if a patient has Lyme Disease?
In a previous post I mentioned that most doctors are not educated in Lyme Disease and that is why it goes undiagnosed and misdiagnosed for many patients for years.
- Since it mimics over 300 other diseases and doctors are not educated in it they assume it’s something else.
- Since the the list of symptoms are endless it gets misdiagnosed as something else.
- Most doctors think it does not exist in California so they don’t even consider it a possibility here. They are lead to believe it only exists on the East Coast in the USA. And if you get your doctor to test for it they don’t understand the testing so most everyone gets false negatives. So even if your test comes back negative IT DOES NOT MEAN YOU DO NOT HAVE LYME DISEASE.
- The tests are not 100%.
- The CDC’s two-tier testing method is flawed.
- Most people have never heard much about Lyme Disease.
- Most people have never heard of Lyme Literate MD’s
So what are the tests to determine if you have Lyme Disease?
If you get a test done at your regular MD they are only testing for one strain of Borrelia Burgdorferi. And they are testing for the antibodies of that bacteria. So basically they are testing your blood to see if your immune system responded to an infection and is trying to fight it off.
I got tested on September 15, 2015 for the antibody of Borelli Burgdoferi (ELISA test) from my primary care physician and it came back negative so of course I was told I did not have Lyme Disease. But that was not true. The doctors don’t know about Lyme Disease so they do one blood test and rule it out. But to rule out Lyme Disease you need a clinical diagnosis and possibly Western Blot testing of Borrrelia and co-infections. You can’t just test for ONE bacteria when most people can get more than one bacteria from a tick bite. And your body can not fight off multiple infections at the same time. So if you only test for one you are not getting accurate results.
So here is the basics on what testing is available?
ELISA – Enzyme-Linked Immunosorbant Serum Assay
Most doctors who are not educated in Lyme Disease will do the ELISA blood test. And if it’s negative they don’t do any other testing.
Results from ElISA are as follows:
< = .90 is Negative
0.91 to 1.09 is Unequivocal
>= 1.10 is Positive
My test result was < .90 so it’s assumed negative. If it came back higher than 0.90 then a Western Blot test would have been done. But it wasn’t and it was a year later when I went to a Lyme Literate MD that I had it done. NOTE: 50% of the ELISA tests produce false negatives!
The Western Blot:
The Western Blot is testing different classes of antibodies IgM and IgG. My understanding is that this test is more sensitive and may show positive results when the ELISA show up negative. The IgM and IgG are Immunoglobulin type M and G.
So if a patient has a lot of symptoms and possibly symptoms for a long time then the Western Blot should be done. In fact, most people say you don’t even need blood tests since a clinical diagnosis for Lyme Disease can be made.
However, I wanted proof that all my pain and other symptoms were caused by something. Since I was told so many times I was making them up I wanted proof from a lab saying I was not making these up. But getting a Lyme Diagnosis didn’t help since most most doctors still thought I was making these symptoms up. Unfortunately, most insurances don’t cover the costs of these tests and they are very expensive.
The Western Blot still confuses me. You get a report of the IgM and IgG antibodies and different bands that are either
IND – Indeterminate
The problem with the CDC is that they are conservative and say you must have 5 bands positive of Borellia Burgdorferi to have Lyme Disease. Again, if you just stop at the ELISA then you really don’t know if you do or do not have Lyme Disease. I can’t stress this enough. You must see a Lyme Literate MD to rule out Lyme Disease. Your primary care physicians and neurologists and other specialists at “TOP” medical facilities do not know how determine if someone has Lyme Disease. These places will only do the ELISA test and stop there if it is negative.
I did gets some positive bands and IND results for the IgM test for Borrelia Burgdorferi. And I also tested positive for the co-infection Babesia. So testing positive for Babesia, a co-infection basically means I have Lyme Disease.
Both of these tests are flawed. And depending on the lab used the protocols may be different. And the CDC two-tiered testing is flawed. So here are some links that can explain it much better than me.
- ELISA CDC Definition
- Life….with a Twist of Lyme
- What is Lyme
- Western Blot CDC Definition
- My Lyme Disease Treatment Blogger
- Tired of Lyme
What is PCR (Polymerase Chain Reaction) Tests and will there every be an accurate test? Check out owndoc.com/PDF
My advice: Go with your gut! If you feel you didn’t get properly tested or the right diagnosis then go to a Lyme Literate MD.
Previous Post in this Series
May is Lyme Disease Awareness Month Blog Post #6 What are the Symptoms of Lyme Disease?
May is Lyme Disease Awareness Month Blog Post # 5 What are Symptoms of Lyme Disease?
May is Lyme Disease Awareness Month Blog Post #4 The Great Imitator
May is Lyme Disease Awareness Month Blog Post #3 What is Lyme Disease?
May is Lyme Disease Awareness Month Blog Post#2: Prevention is the only cure!
May is Lyme Disease Awareness Month Blog Post#1 Lyme Disease Awareness Month Begins