Thursday, July 28, 2011

Lyme Disease & Co-infection Testing

I was given unreliable Lyme disease testing more than once while trying to figure out why I was having horrific crippling symptoms like air hunger, nonstop panic attacks, unbelievable runaway anxiety that would not go away, crushing fatigue, an immune system that was not functioning well just to name a few symptoms that were beyond difficult to function with. Unreliable testing along with ignorant medical doctors were the main reasons it took me years to figure out what was causing my symptoms. My doctors were of little help in diagnosing my illness. I went to many different doctors while trying to find out what was wrong with me. I had to suggest to them that they order Lyme disease testing to begin with because they knew very little about the disease & they did not even suspect that I had it. 

Unfortunately the current CDC guidelines for the testing diagnosis & treatment of Lyme disease & co-infections are misleading. Many doctors go by the CDC guidelines making testing for Lyme disease like trying to find a needle in a haystack. Due to the misleading guidelines many Lyme patients including myself are sick & suffering for years before they receive a correct diagnosis. Many people are never diagnosed correctly and believe they have Fibro, MS, ALS, Lupus, Chronic Fatigue, EBV or fill in the blank. Often doctors do not know the correct facts about Lyme disease. It is an epidemic yet they tell their patients fables like "No reason to test if you have an attached tick bite because your chances of getting Lyme disease are one in a thousand". WRONG!!!! 

Lyme disease diagnosis is a clinical diagnosis which means it should be based on symptoms rather than just test results. You can have Lyme disease & due to a variety of reasons still test negative for the disease. 

If you would like to know why you can have Lyme disease yet still test negative for the disease go to this link.

If you suspect you have Lyme disease you need to be seen by a Lyme literate doctor often referred to as a LLMD. You need a doctor who sees Lyme patients all day long so he can guide you through the diagnosis process. If you suspect you have Lyme disease do yourself a favor if at all possible & find a LLMD in your area to begin the process. I wasted hundred of dollars on useless doctors & unreliable testing so please don't waste yours. You can contact for a list of doctors or go to the forum on to the Seeking a Doctor section. The majority of Infectious Disease Society (IDSA) doctors believe "Lyme disease is hard to catch & easy to treat". They also go by the misleading CDC guidelines because the IDSA created the misleading guidelines in the the first place so IDSA doctors would not be very helpful when seeking a correct diagnosis. 

If I was trying to help someone who suspected they might have Lyme disease I would tell them to order a test kit from Igenex Lab in Palo Alto, CA.  I would tell them to order the Igenex Western Blot for Lyme disease & also to do the co-infection testing Igenex lab offers as well. Having a LLMD read the test results when they are returned is important. You might test negative for Lyme disease yet have enough suspicious bands that an doctor experienced with Lyme disease would know to retest you. If you have insurance that would cover your testing you could try using MDL a lab in New Jersey for testing. Co-infection testing can be unreliable as well as Lyme disease testing yet it is still important to test for co-infections. 

I am not an expert on testing just a patient who has been through the process. 

Here is a link to a blog written by a Lyme literate MD on the subject of testing.

Scott the Better Health Guy on testing.

Another informative link from Scott regarding a NEW Borrelia Culture test. For anyone new to Lyme Disease terminology Borrelia is Lyme Disease.

Here is a link to information about another new test for Lyme Disease among other things that Dr. Lee Cowden prefers. It is called Spiro Stat.

If you need assistance paying for Lyme disease testing go to this link.