Tuesday, May 28, 2013

Understanding Igenex Lyme test results

Since my last post I have been able to have a good look at my Igenex test results for Lyme Disease. A friend who also recently had a Lyme diagnosis was able to graciously explain it all to me in a way that my foggy brain could understand. Here is how she basically explained it to me.

The test is about probability rather than certainty. It looks at a number of ‘bands’ and how strong a response you have in each band. The LDAA (Lyme Disease Association of Australia) have this to say about the bands:

Currently there are 9 identified bands specific to Lyme Disease – 18, 23-25, 31, 34, 37, 39, 83 and 93.  
 A “+” or “IND” to one of these bands is considered a positive result.  A “+” or “IND” to two or more of these bands is considered a strong positive result.
Other bands on the Western Blot report such as 22, 28, 30, 41, 45, 58, 66, & 73, all add significant weight to the result, but at this stage are not necessarily considered  as absolute specific for Lyme bacteria. 
NOTE : It must be stressed that a Lyme Disease diagnosis is not based on a blood test result, but is rather based on medical history and current presenting symptoms – blood tests can assist in diagnosis, but should not be used to base a diagnosis on.  Also, almost all Lyme Disease patients have co-infections such as Ehrlichia, Rickettsia, Babesia, Bartonella, Mycoplasma Fermentans, Chlamydia Pneumonia, etc – these have their own testing and diagnostic problems, but should be considered in the diagnosis and treatment of a patient with Lyme Disease.
 For more information regarding the bands
 31 (also written as 31kDa) – is the outer surface protein A (ospA) – this is a classic Lyme Disease band, used in the Lyme Disease vaccine
 34 (also written as 34kDa) – this is the outer surface protein B (ospB) – this is also a hallmark Lyme Disease antibody, but is excluded from CDC criteria.
 23-25 (also written as 23-25 kDa) – these are the outer surface protein C.  Patients that have a 31 or 34, or 23-25 band have a 97% response rate to the correct antibiotic treatment in conjunction with correct treatment for co-infections.

Here are the bands that are tested
  • 9 cross-reactive for Borrellia
  • 12 specific for Bb
  • 18 unknown
  • 20 cross-reactive for Borrellia
  • 21 unknown
  • 22 specific for Bb, probably really the 23/25 band
  • 23-25 outer surface protein C (OspC), specific for Bb
  • 28 unknown
  • 30 unknown; probably an outer surface protein; common in European and
  • one California strain
  • 31 outer surface protein A (OspA), specific for Bb
  • 34 outer surface protein B (OspB); specific for Bb
  • 35 specific for Bb
  • 37 specific for Bb
  • 38 cross-reactive for Bb
  • 39 is a major protein of Bb flagellin; specific for Bb
  • 41 flagellin protein of all spirochetes; this is usually the first to appear after a Bb infection and is specific for all Borrellia

My results for the IgM were IND or +ve (based on the info above it basically means all +ve) for 31, 39 and 41. And for IgG 30, 34, 41 and 66.  

which means the following apply:

31, 34, 39, 41 are all lyme specific, and it says a +ve or IND on ONE of these is considered a +ve result. 

The LDAA also say  ''If you have not received the Lyme Disease Vaccine and you test positive (“+”) or indeterminate (“IND”) to bands 31 and 34, you probably have Lyme Disease.'

and also “Patients that have a 31 or 34, or 23-25 band have a 97% response rate to the correct antibiotic treatment in conjunction with correct treatment for co-infections”.

So although officially my Lyme test was said to be negative it’s pretty likely that I do have Lyme. If I were to be re-tested after I start treatment then it’s more likely that I would be returned a positive result because as the Lyme dies it’s released into the blood stream where it can be found by the test.

I have more reading to do but I am leaning quite heavily towards my Doctors recommendation of going on IV antibiotics. 

* Photo is of a Lyme Spirochete, taken from the movie 'Under Our Skin'.

Sunday, May 12, 2013

"Without treatment I can see no future for you"

Since December 2009 I have had diagnosis of ME and have been completely housebound since about June 2010. In the last 18 months I have seen many of my local Facebook friends who also have ME get diagnosed with Lyme disease. For a long time I kept thinking ‘no, I couldn't have Lyme because I don’t ever remember being bitten by a tick’. Over time as I picked bits and pieces of info from people the doubt started to creep in, maybe I do have Lyme. So why not have an appointment with a Lyme literate Doctor and find out? Well there are only a handful of them in Australia and none of them were anywhere near me. It’s made very difficult for Doctors here to consult with a patient over the phone or via Skype unless you have had one initial face to face consult. So it was just impossible to talk to a Dr who could give me the answers so I just put it out of my head.

A Lyme Doctor whom a few of my friends were seeing moved his practice a little closer, still an hour and a half’s drive but maybe there was a way. Who was I kidding, I couldn't even tolerate the 5 minute car ride to my local GP! Then something extraordinary happened …. A friend spoke to the Doctor on me behalf and he agreed to drive the hour and a half to come and see me at my home. This is completely unheard of in this country. He spent an hour with me and by the end of the consult he seemed pretty certain that I did in fact have Lyme Disease.

He ordered a mountain of blood tests, mostly regular stuff but he needed to get the whole picture because a Lyme diagnosis is a clinical one, it does not come from any one test. My results came back eerily clean for someone so ill. There were however two things that stuck out. My CD57 was quite low (CD57 is an indicator of how a specific part of the immune system is functioning) and my testosterone was very high. Low CD57 is commonly seen in people with Lyme so this clue helped to confirm the good Doctors diagnosis. The high testosterone was just odd and didn't really correlate to anything … but I suspect in time it will make sense.

There are several actual ‘Lyme’ tests available. None in Australia really give an accurate result. There is one in Europe and one in USA which are preferred options. The problem with these though is that they are dead expensive and still do not give an accurate results for many reasons. One reason is that these are blood tests, and the Lyme often move into the tissues and don’t live in the blood, so looking at blood is not going to find it. We decided to send my blood to USA at a cost of over $1000. If it came back positive we would know for sure we were on the right track. If it came back negative we would just have to keep assuming that we were on the right track.

My test came back negative. Not what I was hoping for but bad luck I guess. After receiving the result the Doctor said to me that he is certain I have some sort of stealth infection, probably Lyme or something similar, so we should move ahead with treatment plans. He said ‘without trying treatment I can see no future for you’ …. That statement really hit me hard. I think even though I have been so desperately ill these last 3 years I have still been in denial about the fact that this will be my life for ever. Who wants to exist like this for ever? Treatment is always a risk but what choice do I have really? Currently I am relying on my parents and a friend to survive. They do everything for me that I cannot, and the list is long. Perhaps we can limp along like this for a few more years but then what? My parents are in their 70’s and my friends health is also not good. I need to put on a brave face and just leap. Treatment may make me well, it may make me sicker, it may kill me …. But I have to do it.

The Doctor is talking IV antibiotics. I have another consult with him this week and will discuss further …. So stay tuned for part two!