Thursday, September 13, 2012

Sarcoidosis and Lyme: For Your Information Zena

THIS POST HAS BEEN UPDATED

I assume having a pulmonary sarcoid is the same as sarcoidosis?  That is why I thought of you.  It appears that some people who have been diagnosed with Sarcoidosis possibly have Lyme disease. In Australia Lyme Disease is not a truly recognised disease although many of us know it exists so please take a moment to visit this website.

If you are interested in getting tested, you will need a referral but the lab testing here in Australia that I have been referred to is Australian Biologics if you want to Google it.  It will cost $450. Borrelia PCR - urine/whole blood is the name of the test.

I just read that "The Lyme PCR Test is the gold standard for Lyme disease testing accuracy
The PCR test is not well known but very accurate. The Polymerase Chain Reaction (PCR) test confirms that Lyme bacteria are present in the body. The PCR test is relatively new. It is designed to confirm that Lyme bacteria DNA are present. A positive PCR test almost always guarantees that a patient has Lyme disease, if the laboratory work has bee performed properly. Dr. Braccia observes, "A negative PCR doesn't prove a patient doesn’t’ have Lyme however there are PCR strategies that assist in the test confirmation. Another factor that must be taken into consideration is do the fact that PCR test results often vary depending upon which lab performs the test. Therefore it’s important for the physician to use a lab that is accurate in their analysis. " Reference: http://www.prweb.com/releases/2010/02/prweb3542194.htm

However, Australian Biologics is not an approved lab as far as I understand.  Getting a positive diagnosis seems less than 50/50 from the bits of local (Australian Facebook) information I can glean.  A negative here usually means that the diagnosis is not confirmed rather than a definate no to the Borrelia borer (my nick name for spirochete).  So most seem to then go for the overseas, supposedly more reliable test at $3000 which I think throws in a few other common co-infection tests.  I am starting to understand that the type of co-infection profoundly effects the types of symptoms manifested so Lyme disease seems to have sub types.  Not everyone has the neurological Lyme so commonly seen on TV.  I might not be very accurate describing this.  There are others who know so much about it but at the same time some information getting around is not altogether accurate either.  For instance you don't have to have Herx symptoms after treatment and the online community seems to welcome feeling worse before feeling better at least for the sake of hope.  Anyway I read somewhere today that it is a bit of a myth but also that herxing is quite possible.

As far as the lab not being accredited, I am not sure that it is such a bad thing.  I have heard bad things about one that is and given the politics behind the suppression of Lyme in Australia (which I do not understand) perhaps having Government approval is not an indication of accurate testing.  I wouldn't really know.  If we need to we will learn as we go.

One online friend had both the AB lab test and the IGENEX test in the USA and got a positive on both so that she said the top dollar one was a waste of money for her.

I will get around to doing the AB test after I dig up the money. 



 

3 comments:

Sue Sherratt CMC said...

Hi I actually run the web site www.sarcoidosisaustralia.com. I have had Sarc since the mid 1980's and just undergone the blood and urine test at Australian Biologics for Borrelia Real-Time PCR and to my amazement results for both came back positive to Borrelia

ZzirF said...

Hi Sue, I know you from Lyme Australia and friends on Facebook

Sue Sherratt CMC said...

Ah hi. The new web site is now www.sarcoidosislymeaustralia.com. so do you have a SARC diagnosis. Id be interested once you get your PCR test back.