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Lymes results back from Igenex

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Posted 6/22/2012 1:14 PM (GMT 0)
Hi i live in the UK.

I went to the Breakspeare clinic who are very lyme literate. Anyway they send me the results back, and I have an appointment to talk to the doctor at the end of the month because there are other blood tests to come back.

I know i am being impatient lol, but these are the results. It sounds as though I dont have Lymes phew, but not sure about what all the other things on western blot mean.

The test result is:

Lyme IgM/igM seriology was within the normal range
Lyme IgM Western Blot was reported as negative with an indeterminant band at 41kDa
Lyme IgG Western Blot was reported as negative with an indeterminant band at 83-93 kDa, + band at 66 kDa and ++ band at 41 kDa.

Anyone translate lol.
P.S I either have MS or Lymes or my doctor said I had MS with a co infection of Lymes. Been ill for 6 years. Failed all my neuro tests and have a pale disc in my left eye, rombergs, babinski, nystagmus and other bits and bobs lol. I had optical neuritis probably in 2004, and went blind for minutes in 2000 in brazil.

Anyway i used to fish up the lakes where there are sheep and deer.

Thanks for reading.
Posted 6/22/2012 8:51 PM (GMT 0)
Hey,

We are also BS patients. I just wanted to say that although your results seem to have been interpretted as normal/negative by the lab this doesnt mean that you dont have Lyme and it is really up to your clinician to assess you primarily on the basis of your symptoms and history. Interpretations of the western blots will differ according to lot of variables.

Good luck and glad you found the BS

Hugh
Posted 6/22/2012 9:28 PM (GMT 0)
Hi Mrs Aristotle,

You are in good company here - I'm another UK patient (although currently battling with the NHS).

Lyme diagnosis is not just about the test results, as people with long-term lyme often get negative tests, and it is also possible to get false positive results too. The 41 band is the most common with lyme, but also shows up for numerous other (not necessarily harmful) bacteria. 66 is common to all bacteria and 83-93 are though to be cytplastic membranes (again, possibly found in several types of bacteria). So, there are signs that you have had (or still do have) some form of bacterial infection, but not necessarily lyme and not necessarily harmful. The tests don't often help much when someone has had lyme for a long time - check out the 'new to lyme' section for more info on this.

BS are likely to look at your medical history, symptoms, response to treatment and the exclusion of other illnesses to determine if you do have lyme. I know it's horrible, but you are better to wait for all the blood tests and your appointment before second guessing.

Hope this helps a little,

Kirsty

Posted 6/23/2012 3:49 PM (GMT 0)

Morti81 said...
Hey,

We are also BS patients. I just wanted to say that although your results seem to have been interpretted as normal/negative by the lab this doesnt mean that you dont have Lyme and it is really up to your clinician to assess you primarily on the basis of your symptoms and history. Interpretations of the western blots will differ according to lot of variables.

Good luck and glad you found the BS

Hugh

Hi hugh who are you seeing?

I think i understand it all now. I have been told this morning that they are going to start me on 2 months antibiotics as the test result 83 shows lymes specific and something is current at 41.

The IgG I was told means i had something, but it could have migrated out of the blood stream into organs, and that is why it isnt showing as IgM now. The idea from what i gather is to stir up the auto immune system and hope that the bacteria if it is hiding will show back in the blood stream.

Crikey it is all so complicated lol.

I have found an American buddy who had the same results as me, and after 2 months of antibiotics they found current lyme 83.

We shall see.

I wish it didnt cost so much lol. Its a shame we have to have it done privately. Thanks for replying.
Posted 6/24/2012 3:16 PM (GMT 0)
Like worrypot said, a negative test doesn't necessarily mean no lyme. My lyme test has become more and more positive with treatment, as is the case for a lot of people. The thing is that the western blot tests your immune system's response to the presence of bacteria, however, the presence of bacteria suppresses your immune system's ability to respond! Crazy, right? Sometimes a rule of thumb is that the sicker you are, the less likely you are to test positive.

Just something to mull over/research on your own - there appears to be a connection between lyme and MS. It's one of those things where many people speculate that MS is caused by lyme, while others think lyme is really misdiagnosed MS, depending on which side of things you're on. Just be cautious - a few people here on the forum (and I assume many more elsewhere) have been falsely diagnosed with/treated for MS when it's actually been lyme, and they're obviously two VERY different treatment strategies.

Keep us posted - I hope you find some healing soon!
Posted 6/25/2012 5:15 AM (GMT 0)
Hi borderlyeme(love the ID), THANK you, i have learnt so much about Lyme in the last few weeks lol. I am very sick now if i did get it was it pre 2000 or after sometime not sure. I went blind in Brazil for seconds in one eye, then the same again when i got home. I was told by my doctor at the end time it was nothing to worry about just probably the heat and a bit of low blood pressure. (I kid you not). Now i had eye problems again in 2004 and a relapse for 6 months was ill with MS/LYME problems.

Anyway I have had optical neuritis confirmed in both eyes in 2007, and all my tests for neurological problems are positive for MS. However, some things going on are not MS, and my new doctor at Breakspeare believes I have MS WITH A co infection of Lymes. I had another result I missed which was:

E chaffeensis igM negative and E. chaffeensis igG was INDETERMINANT.

I believe this is for bacteria that causes Ehrlichia, and is classed as a not negative," which means I was exposed to it at some point.

The thing is i cant find Ehrlichia in the UK.

I have lived in Kenya, Africa, Asia and Europe.

Thank you again to you all for taking the time out to answer my post. I feel tons better.

I believe you are right about Lymes and MS. I have met people diagnosed with MS who could quite easily have Lymes, and vice versus.
Posted 6/25/2012 5:34 AM (GMT 0)
sorry missed something.

I cant find E. chaffeensis in the UK, BUT I find it in USA. Amblyomma arnericanum from the Lone Star Tick?

I was in the states but cant remember when before Brazil anyway, sorry my memory since i lost it for 3 hours in 2007 is not as good as it was. We went to Hossamonga springs, Datona, for a week, then to the gold coast.

Anyway I was a bit taken a back about the E chaffeensis. I was negative for bartonella which is weird as recently i had the classic bartonella rash on my back, all the cat scratches it looked like lol. Still have it i get a lesion then it clears and leaves a small scar. I was diagnosed with shingles a few months ago on the left, but it wasnt spots it was more like small line lesions, and tickling under my skin nearly drove me nuts.

Anyway its all so complicated. I cant wait to talk to my doctor on Saturday lol. I expect she will dismiss it all and I will be non the wiser it seems that I have so many positive tests come back over the last 6 years, but the always fail slightly on a diagnosis.
Posted 6/26/2012 9:15 PM (GMT 0)
These things are so frustrating! The research isn't exactly finite as far as which infections are where, and/or how they get there - there are so many more suspected modes of trasmission besides ticks and these things can travel! A lot of this stuff unfortunately is trial and error - my best advice is to follow your own instincts. Doctors and people in general tend to assume we can't know what we're talking about, but the truth is no one's going to know about your condition better than you! I've done so much research - and all of that research is specific to ME and MY symptoms so when certain things keep coming up, it probably means something.

Hopefully the doctor you're seeing can help point you in the right direction so you can start feeling better!
Posted 11/28/2012 10:43 AM (GMT 0)
Hello there,

I am from the UK too and have been to Breakspear. I am awaiting the lyme test result from Germany, but have my Igenex ones as follows:

IFA 40 Equivocal

IgM

23-25 ++

31      +

34      +

41      +

Igenex positive

CDC/NYS positive

IgG

23-25 IND

39     IND

41     +

58     +

Igenex negative

CDC/NYS negative

I know I need to wait to see what the Dr says, but just wondered if any one can help. Thank you so much x 

Posted 11/28/2012 3:21 PM (GMT 0)
Kaz,
Were your questions answered in the other thread - the one that you started?
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