RA or Lyme?

[stile RA]

Hi Kim.  Here are the Lyme test results I got back from Igenex.  After being on AP for RA for a year with no improvement, I decided to get tested for Lyme but I am not sure how to read the results.  Thanks for the help!

TEST: IFA, B. BURGDORDERI      1:40 Titer    INDETERMINATE   

LYME IgM Western Blot:          Igenes IgM result: Positive,  CDC/NYS result:  Positive

                                                18 kDA.   –

                                                22 kDA.  –

                                      **23-25 kDa.   ++

                                                28 kDa.   –

                                                30 kDa.   –

                                            **31 kDa.   +

                                            **34 kDa.   +

                                            **39 kDa.   IND

                                            **41 kDa.   ++

                                                45 kDa.   –

                                                58 kDa.   +

                                                66 kDa.   +

                                                73 kDa.   –

                                      **83-93 kDa.   +

LYME IgG WESTERN BLOT:    Igenex IgG result:  NEG,     CDC/NYS result:  NEG

            18 kDa    –

            22 kDa    –

   **23-25 kDa    –

            28 kDa    –

            30 kDa    –

        **31 kDa    –

        **34 kDa   –

        **39 kDa    IND

        **41 kDa    ++

            45 kDa    –

            58 kDa    –

            66 kDa    –

            73 kDa    –

   **83-93 kDa    –

[nspiker]

stile,

I'm not Kim, but I'll chime in with my two cents….drumrole….you have lyme! 

You're even IgM CDC positive for lyme.  You have many IgM lyme specific positive bands; 23-25, 31, 34, 41, and 83-89.  All the bands with a ** preceding them are lyme specific. 

You are not Ignenex or CDC positive on your IgG, but still have a positive band 41 and an IND for band 39, which are both lyme specific bands.  Band 41 can sometimes cross-react with other flagella or viruses, but you have enough other positive bands to point to lyme.  I'm sure most LLMD's would treat based on these results.

At least you know what the culprit is that's making you sick, and can get on the road to recovery…welcome to the club :(.
nancy

[hopefulmama]

hi Stile,

those results are even more positive than the ones that i got, and two different LLMDs have since confirmed that I have lyme.  i've asked a lot of questions about which bands are specific for lyme… i have 3 of the same positive bands that you do, and been told that two of them are lyme specific and the other is specific for any spirochete (such as syphillus).  i am 100% sure that if you see a LLMD they will diagnose you with lyme and begin treatment.

if you are CDC positive, there isn't really any doubt about it at all.  which is great for you, you don't have to wonder about the testing company.  you simply have lyme.

congratulations… you're a lot closer to getting well now 🙂  and as i have found in the past two months, there are a lot of different ways to treat lyme so i am sure you will find a modality that you feel good about and which works well for your body.

good luck!

Andrea

[stile RA]

Wow, that is great!  Obviously not that I have Lyme but that I have a direction to go in and can begin a plan of attack! 😀  This illness has robbed me of my life for over ten years.  I think it is high time I do the same to it!

Thank you for helping interpret the results.  That is the best news I have had in a veery long time.  I now have hope!

Greatfully,

Cindy

[Suzanne]

[user=2523]hopefulmama[/user] wrote:

if you are CDC positive, there isn't really any doubt about it at all.  which is great for you, you don't have to wonder about the testing company.  you simply have lyme.

I disagree with that – if only one lab can get you that result, it still makes you wonder.

A 'CDC positive' on an Igenex test just means their test results met CDC criteria (such number of positive bands) vs. their test results meeting only 'Lyme-specific band' criteria.  It is still an Igenex test.  The CDC does not have anything to do with the test itself.

Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.

[stile RA]

[user=18]Suzanne[/user] wrote:

[user=2523]hopefulmama[/user] wrote:

if you are CDC positive, there isn't really any doubt about it at all.  which is great for you, you don't have to wonder about the testing company.  you simply have Lyme.

I disagree with that – if only one lab can get you that result, it still makes you wonder.

A 'CDC positive' on an Igenex test just means their test results met CDC criteria (such number of positive bands) vs. their test results meeting only 'Lyme-specific band' criteria.  It is still an Igenex test.  The CDC does not have anything to do with the test itself.

So…..what you're saying is that I must get more than one lab to test for Lyme  in  order to verify I have Lyme?  You said CDC does not have anything to do with the test, so does that negate the information from Igenex?  If it meets the CDC criteria why would the information not be valid?

Cindy

[Suzanne]

[user=1140]stile (RA)[/user] wrote:

So…..what you're saying is that I must get more than one lab to test for Lyme  in  order to verify I have Lyme?  You said CDC does not have anything to do with the test, so does that negate the information from Igenex?  If it meets the CDC criteria why would the information not be valid?

Cindy

Lyme is a clinical dx, so personally I wouldn't get another test because all Lyme tests are unreliable. 

Nothing negates the info from Igenex, but just because the lab report has 'CDC' written on it doesn't support the info, either.  That was the point I was trying to make.

The CDC has criteria for a positive test related to the bands.  This is probably explained on your test results somewhere.  It probably also explains an Igenex positive – not as many bands, but certain bands they consider to be significant.

But when all is said and done, Igenex did the test, so you have a positive test from Igenex – a positive test with more bands than a lot of people get, who are then successfully treated for Lyme.  It is something for you and your doctor to decide!

Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.

[hopefulmama]

Thanks, Suzanne – I see what you mean.  You are saying that it would take multiple “CDC positive” tests via different testing companies to confirm that a person actually had lyme?  E.g. Five or more positive bands on a Labcorp or Quest test, in addition to an IgeneX test?  That makes sense.

I know that I was negative (even western blot negative) for lyme through Labcorp.  However, both LLMDs I've seen tell me that lyme is a clinical diagnosis and that the bloodwork can underline a diagnosis but it cannot make the diagnosis by itself.  The IgeneX test also tested a few additional bands that were not in my Labcorp test… the ones that were taken out when they made the Lyme vaccine.

I also know that maybe chasing lyme will turn out to be a false lead.  Still (and this is only for me, of course, everyone is different) I have come to the point where my Raynaud's and GERD are bad enough that it means something to me to at least be *trying* a route toward wellness.  I don't want to sit around while I progressively get worse… and I don't see the harm in trying to rebalance my hormones, adrenals, eat well, detoxify, etc.  Doesn't seem like it can hurt.  So, I guess only time will tell.

[Suzanne]

[user=2523]hopefulmama[/user] wrote:

Thanks, Suzanne – I see what you mean.  You are saying that it would take multiple “CDC positive” tests via different testing companies to confirm that a person actually had lyme?  E.g. Five or more positive bands on a Labcorp or Quest test, in addition to an IgeneX test?  That makes sense.

 

I do not even think multiple tests can confirm it, it is still a clinical dx at this time.  I also don't think anyone is going to get multiple positives from different labs, even if you show up at the dr. with a tick still attached surrounded by red rings.

I think everyone should trust their instincts.  It goes both ways – people are told they have RA, nothing helps and they find out they have Lyme and they recover; people are told they have Lyme, nothing helps, and they get a different dx and they recover.

Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.

[stile RA]

[user=18]Suzanne[/user] wrote:

I think everyone should trust their instincts.  It goes both ways – people are told they have RA, nothing helps and they find out they have Lyme and they recover; people are told they have Lyme, nothing helps, and they get a different dx and they recover.

 

Suzanne,

Thank you for the clarification.  As you said, the RA treatment wasn't working so now will try the Lyme treatment and hope for the best.:)

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