I just received my IGENEX results back–help translating??

[Fran]

I just received my IGENEX results:

Western Blot IgM; CDC Positive;  Bands 31 (IND), 34 (IND), 39 (+), 41 (+), 58 (+).
  Western Blot IgG; Negative;   Bands 31 (IND), 34 (IND),  39 (IND),  41 (++).

I have no idea what this all means.  Does anyone have any insight as to whether this is positive or not?  Is there a website that helps interpret this stuff?

Thanks!  Fran

[Maz]

[user=123]Fran[/user] wrote:

I just received my IGENEX results:

Western Blot IgM; CDC Positive;  Bands 31 (IND), 34 (IND), 39 (+), 41 (+), 58 (+).
  Western Blot IgG; Negative;   Bands 31 (IND), 34 (IND),  39 (IND),  41 (++).

I have no idea what this all means.  Does anyone have any insight as to whether this is positive or not?  Is there a website that helps interpret this stuff?

Hi Fran,

You're CDC (Centers for Disease Control) positive – it doesn't get more positive than this. Looks like you finally have your answer about what has been going on. 😉

You're showing sensitivity of some very specific bands, one of which was removed from the standard tests when they were creating the LymeRix vaccine, as well. In other words, these antibodies were so specific to Lyme that they didn't want cross-reactivity with the vaccine if people had been infected or re-infected with Lyme when they got the vaccine. Well, the vaccine failed – actually caused cases of rheumatoid arthritis and other AI problems – so it was withdrawn from the market. This sort of speaks to how important this band is (31). IND readings basically mean “indeterminate,” or just not enough antibody in your blood at the time to test fully positive…however, if you look at it this way, you can't be a little bit pregnant. If there is antibody there, then it's there for a reason. Regardless of the IND bands, however, you're positive as per the criteria the CDC has set, so there's really no question you have Lyme.

If this helps, you're actually showing more positive than me and I was considered IGeneX positive on just Bands 39 and 41 (with an IND on bands 23-25) on my IgG (past infection). However, I also had 2 EM rashes, which clinched it.

Here are some links to help you interpret your results – the first is a link to Dr. C's interpretation of the IGeneX WB (he's Kim, JB's, Elaine's son's, Eann's and a few other folks LLMD here):

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=042077;p=0

http://www.lymenet.de/labtests/brenner.htm

It's a good job you went ahead and had this test done, Fran…should help to explain quite a bit. 😉  And, when borreliosis is in the picture, there are usually co-infections which often keep a person sick and need separate treatment…would also explain why you were able to knock it back with your first round of AP and then it came back for another stab a bit more aggressively the next time. This is pretty common with Lyme and relapses are to be expected if the pressure isn't kept up and coinfections treated adequately.

When do you see your LLMD?

Peace, Maz

PS Would be a good idea to start some researching now, Fran…the book by Pam Weintraub – Cure Unknown” – is the new Lyme bible and will bring you up to date with much of what will help you along the way. You can read the Forward to the book here:

http://www.cureunknown.com

[Kim]

Hi Fran,

Sorry about your results, but at least you know now which direction you need to go.  Getting the right treatment with the right doctor will make things start falling into place so you can once again feel normal and get on with your life.  You already know that Lyme treatment is not quick and not easy, but worth it in the long run.  Inadequate treatment only allows the infection(s) to destroy your body so you have to mount a serious attack.

Good luck, Fran.

Take care…..kim

[Fran]

I'm still confused as to whether this is positive.  I read that if the IgG is negative then you should get tested a few weeks later to see if it is still negative cuz it could indicate a false positive lyme test (if your IgM is positive and your IgG is negative).  If I've been sick with this for 4 years, shouldn't the IgG be positive also?

Also, I'm confused cuz the bands 22, 23 and 25 which I thought were indicative for lyme, I'm not positive on.

I also read that if you have a positive ANA (which I do) that it can create a false positive on the western blot test cuz the auto-antibodies can mess up the test results.

Does anyone test negative?

I got the info on the IgG/IgM at this link:

http://www.righthealth.com/topic/Igm_Western_Blot/overview/healthocrates20?fdid=healthocrates_19866bd111b06c0cc6035f0550994b27#ixzz0tiH4FwNK

Fran

[Maz]

[user=123]Fran[/user] wrote:

I'm still confused as to whether this is positive.  I read that if the IgG is negative then you should get tested a few weeks later to see if it is still negative cuz it could indicate a false positive lyme test (if your IgM is positive and your IgG is negative).  If I've been sick with this for 4 years, shouldn't the IgG be positive also?

Also, I'm confused cuz the bands 22, 23 and 25 which I thought were indicative for lyme, I'm not positive on.

I also read that if you have a positive ANA (which I do) that it can create a false positive on the western blot test cuz the auto-antibodies can mess up the test results.

Does anyone test negative?

Hi Fran,

Lyme is very controversial now – the link by Dr. C above explains the wavering to and from of IgM and IgG….basically, Lyme is a waxing and waning infection. This is due to it being a pleomorphic organism that changes from active spirochete to L-form to cyst form and various other forms in-between, like blebs (fragments). When in its cystic form, the outer surface proteins become diminished and so the immune system can't pick up the foreign antigens. The spirochete also changes up its outer surface protein coat so swiftly that the immune system has trouble tracking it down….it changes, the immune system senses the foreign invader, goes after it but by the time it reaches the target, all it picks up is the left-behind chem-trail of the spirochete (and our own tissues become the collateral damage)…it's gone underground again and shows up elsewhere in the body with a new outer surface protein disguise. The following video explains this in good detail:

http://envita.com/sections/disease/lyme/default.aspx

What you're referencing is material that follows the IDSA guidelines. The IDSA does not recognize a chronic form of Lyme. In fact, there are more false negatives than false postives for Lyme, according to LLMDs. It's actually quite difficult to get a positive test on the standard tests….however, had you run the standard test, too, you likely would have come up positive on them by CDC standards.

Many Lyme patients have positive ANAs. This is described on Dr. J's website somewhere, if you have time to browse. This link also explains how the IgM can persist for years:

 http://www.jemsekspecialty.com/lyme_detail.php?sid=9

Fran, if one believes in infectious causes for rheumatic diseases, then all these antibody tests are the result of infections. Again, the video above explains how the body's own tissues become collateral damage with Lyme, so it's no surprise that what are thought to be AI markers, are indeed infection markers. My LLMD actually watches my RA markers to gauge my progress on abx therapy.

I think once you have read the links above and also the book by Weintraub, much more will become clear to you.

I was actually watching the PA senate hearings on Lyme last night that were held on 22nd June. These are worth watching for anyone interested in Lyme….the stories heartrending, but there is much info given by the docs on why this disease has become so controversial and why insurance companies are LOVING the IDSA restrictive guidelines.

http://www.ilads.org/news/lyme_legislation/74.html

Yes, some folk test negative….and some folk also test negative when they have distinct bulls-eye rashes! Some of the sickest people with Lyme never test positive on any Lyme test, because their immune function is so compromised, they can't mount an antibody attack on the infections. Lyme must be a clinical diagnosis, but if you have labs that indicate Lyme, this is just a nice confirmation (as you now have).

Hope this helps, Fran.

Peace, Maz

[Trudi]

[user=123]Fran[/user] wrote:

I'm still confused as to whether this is positive. 

Hi Fran–

You are “fortunate” to be CDC positive–it will make it much easier to receive treatment and have it covered by insurance.  I sincerely hope your confusion isn't really denial because the sooner you start the process of healing with an LLMD the better.

Take care,

Trudi

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

[Fran]

Thanks Maz.  I'll read through those links.  The link I posted was one that was sent to me by my Mom, a nurse.  I'm feeling like I'm going to have to justify this and be able to explain it, if it is Lyme, to everyone around me who doesn't believe I could possibly have lyme disease.  Like I need one more thing to suck more of my waning energy!!

I did read Dr. C's link last night but need to re-read it because its so foreign to me.

Thanks for all your help in figuring this one out!  Fran

[Fran]

Trudi-  No, I'm not in denial, I would like an answer.  I just don't understand the test results and whether they do mean truly positive or not, especially cuz my IgG is negative and the bands indicative for lyme are not positive (like band 22, 23 and 25).  I'm just trying to understand it all.  Maz gave me some sites to read up on all this.  I don't even understand what it means to be CDC positive on IgM but be negative on IgG???  I'm truly confused by all this and just trying to make sense of it.  Lyme is very new to me and I know absolutely nothing about it.  Fran

[nspiker]

Hi Fran,

So sorry to have to welcome you to the lymie group:blush:.

I tested negative for lyme,  five times over the last ten years.  I tested IgG and IgM negative by Igenex too.  Finally, an additional test revealed I had been exposed to lyme. 

I was probably one of the most stubborn, and reluctant, dragging-my-feet to this diagnosis.  I didn't see how I could have had a tick bite.  It was just one more burden on top of everything else I was dealing with.  And, as you say, no one “gets” the lyme diagnosis.  I was diagnosed with Chronic Fatigue Syndrome years ago, so lyme was just another misunderstood diagnosis – I was used to it.  You'll find a way to explain what it is that has made you sick.  Sometimes I just tell people I'm dealing with a complicated infectious process, it makes it a lot easier to understand.

This morning I was on the beach with our dog and another woman brought up the incidence of ticks with dogs, and how sick they can become.  She said that she heard an author give a lecture on ticks, and how this vet thought that many illness in dogs, especially arthritis, were caused by ticks.  I hadn't even mentioned anything about my diagnosis.

The good news is that your confirmed test will allow an LLMD to treat you.  It's been eight months of treatment for me, and I have improved significantly.  Once you get over the shock 😯 of the diagnosis, and start to put in place your treatment, you'll be on the road to feeling better…

nancy

[Maz]

[user=123]Fran[/user] wrote:

I just don't understand the test results and whether they do mean truly positive or not, especially cuz my IgG is negative and the bands indicative for lyme are not positive (like band 22, 23 and 25).  I'm just trying to understand it all.  Maz gave me some sites to read up on all this.  I don't even understand what it means to be CDC positive on IgM but be negative on IgG???  I'm truly confused by all this and just trying to make sense of it.  Lyme is very new to me and I know absolutely nothing about it.  Fran

Fran, I didn't understand it all in the beginning either, so you and me both. After you've done some reading up on the subject, much more will become clear. As Nancy mentioned above, though, just try not to get too overwhelmed with this…it takes a while to absorb all the new terminology, but if you print out the links above and compare them to your labs, much more will start to fall into place.

What it means to be CDC positive, means that the Centers for Disease Control for the US has set out criteria (upon the advice of the IDSA – Infectious Diseases Society of America) that lay out what exactly constitutes a positive test. As Nancy mentioned, many Lyme patients don't meet this very stringent criteria (current estimates being that 50% or more will get false negatives – false positives are much more rare). However, you are very fortunate, because you do have a positive CDC result! This means that there really is no question (in the mainstream eyes) that you have Lyme disease (unless you get a doc arguing the false positive stance – if so, why use this useless standard test, at all, if a person tests CDC positive and then is regarded as negative? It doesn't make sense).

With the IgM and IgG thing….controversy surrounds this, too. What it bascially comes down to is that IgM means present infection (within the last 4 to 6 weeks) and IgG is past infection (beyond 4 to 6 weeks). The conventional view is that if a person has had Lyme for longer than 4 to 6 weeks and has received the IDSA prescribed standard of care (2 to 4 weeks of doxy, amoxy or cefuroxime), then the IgM is meaningless, because the person must be cured.

However, this doesn't take into account what is at the core of this major controversy that the IDSA has dictated there is no chronic form of Lyme and that it is easy to diagnose and treat. So, bascially, what they're saying is that if you have received a month of doxy, then it doesn't matter what your IgM or IgG is saying, because as with every other infection a person gets in their life, they will always carry antibody for that infection. This, however, is what is contested by the ILADs (Intl Lyme and Assoc Diseases Society)….that Lyme is pleomorphic, it alters form to evade antibiotics, and can be re-activated when the dormant cystic form re-emerges. There is much research out there that confirms this, but the IDSA (who has been under a major conflicts of interest investigation by the Atty Gen of CT this past couple of years), is controlling the peer-reviewed journals and rejecting any published material that contradicts their own research. In fact, the original panelists that devised the 2006 Lyme Tx Guidelines actually picked their own research and that which agreed with theirs to write these restrictive guidelines. Other conflicts of interest included the panelists receiving sums of money for consulting with insurance companies to say that Lyme was easy to dx and tx as well as to receive sums of money to act as expert witnesses against LLMDs treating Lyme in cases they brought against them, and are also involved in devising new Lyme testing kits and vaccines….so you can see these guys have basically been outed as having serious conflicts of interest in ensuring that Lyme remains a disease that appears to be one that is as simple as a bout of bronchitis to treat.

There are some very good resources out there that include independent research demonstrating the chronic persistence of Lyme, if you'd like me to send these to you, Fran.

With the IgM and IgG thing, the easiest way to explain this phenomenon is that Lyme is pushed into dormant cystic form by short courses of abx (these dormant cysts have reduced outer surgface proteins/antigens, which the immune system doesn't pick up), hence it's thought that the disease is “cured.” When the abx are stopped, the spirochetes re-emerge (sometimes within weeks or months to years later) from their cystic cases and re-appear as a brand new infection (hence the IgM). This can happen with untreated Lyme, too, because it's known to be a waxing and waning illness, where symptoms may flare and then disappear for a period of time…only to re-emerge again later, manifesting in the same or new ways physically and usually more aggressively, as it's had time to regroup. The mainstream view of this occurance is that it isn't Lyme, but some other disease (like MS, RA, Parkinson's, ALS, etc) or if symptoms are just minor, a post-Lyme syndrome and just “the aches and pains of daily living.”

Even more ironic is that ticks pass much more than just Lyme – they pass co-infections that keep people sick, even if one does adhere to the IDSA guidelines. These aren't even considered when someone shows up to a GP with a bulls-eye rash. The last eBulletin was all about Lyme…in it is new research from a rheumy in MD who has discovered that 20% of his patients are carrying various strains of bartonella, which he suspects may be a major player in RA. Bartonella often requires heavy-hitting abx, like rifampin and the fluoroquinolones, like levaquin.

https://www.roadback.org/emailblasts/ebulletin_spring10.html

Fran if you get a chance to watch the PA senate hearings that were only a few weeks ago (link above), it's about 2 hours long, but very worth watching (and maybe sending to your Mom?) to get a birds-eye view of patient/patient advocacy testimony and the political complexity that has arisen with the two very opposing medical views of this disease.

Probably what I've written here will all sound like gobble-de-goop, but once you've read the links above a few times and become more familiar with the terminology, you'll be an old pro with it all in no time. It's then up to you to decide what makes the best sense to you. 😉

Peace, Maz

[mschmidt]

Fran,

Welcome to the Lyme club–sorry you're a member.  I, too hope that you are just in shock, being recently diagnosed.  I'm so glad I took the test early into my disease process because it's made a big difference in my recovery.  It's better to know what you're dealing with so you can make informed decisions about whatever treatment path you choose.  My theory is it's better to know than not to know.  Please ask any questions you need to–there are many of us on here that are dealing with Lyme, and happy to offer support and our experiences.  The best of luck to you.

Maria

[PetRescue]

Hey Fran-Dr. P said you were positive, right? My results were somewhat similar- IgM positive, IgG negative. Don't worry too much about figuring it out. That's what the doctors (and Maz!) are for. Just think, you are positive for Lyme and hopefully by treating the Lyme you will make further progress on AP. Do you have an appt with Dr. P?

~jen

[Fran]

Thanks all for all your info and advice.  I'm currently on vacation but had to “check in” with Road Back as I digest this info I learned the night before we left for vacation.  I am starting to digest it more now.

Maz, as soon as I get back, I'm going to get to reading all the info you have recommended.  I really appreciate you  taking the time to help me understand this!  I know you must get tired of the “newly-lymed” asking all these questions, but I do appreciate you helping so much.

Jen-  I don't have a follow up yet with Dr. P because I got my test results the night before I left for vacation so as soon as I get back I need to talk with him.

Talk with you all soon!  Fran

[Author]

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