One of the problems with diagnosing Lyme by the tests is that they don't always represent what's happening because of the strange things the bacteria does to the immune system, and how the bacteria hides, Here in the US we have a huge disparity between what the government acknowledges officially, and the people who are clinically diagnosed (based on symptoms, opportunity for exposure, etc) and treated. Indeterminate I believe is not negative but not high enough to exceed the limit to be considered positive. 39 is a Lyme-indicative, as is 41, so your daughter seems to have been exposed at some time. The other thing is that Lyme can lie dormant for years and only manifest as the disease when the immune system is stressed by something else, opening the door for the Lyme to flourish. I just went out to the Igenex site for a quick refresher on the bands, and it looks like she doesn't have all the bands high enough to officially be positive, but that's where the clinical diagnosis comes in. I was not officially positive either, but my Lyme doctor said I have the symptoms, I had plenty of opportunity to meet with ticks, so he's treating me. Let me tell you it has made a huge difference in the quality of my life, and the buggers aren't gone yet.
From igenex: An IgM blot is considered positive if two of the following three bands are present: 24 kDa (Osp C), 39 kDa (Bmp A), and 41 kDa (Fla). An IgG blot is considered positive if five of the following ten bands are present: 18, 21 (Osp C), 28, 30, 39 (Bmp A), 41 (Fla), 45, 58 (not GroEL2), 66 and 93 kDa.
Yes it's possible she does not have Lyme, but it does sound like it's also very possible she does. I would push for reconsideration if you can.
Good luck and let us know what happens -
The IGeneX tests are structured quite differently from the old standby tests, ELISA and Western blot. (My Lyme doc used all three tests, just to get a broader range of data.)
An IGeneX PCR test looks in your blood for the actual DNA of Lyme bacteria, which is a very accurate and reliable indicator, tho the older docs don't always use it, since they tend to think ELISA and W.blot tests are good enough. (PCR is short for 'polymerase chain reaction'.)
The ELISA/W.blot tests can, however, be wrong and give a false negative result, especially in a longtime Lyme infection in which more time has passed since the initial bite. A 'false negative' result means the test says 'no Lyme here', when really the patient has a true Lyme infection, but the test doesn't 'see' it because the human immune system has given up looking for it.
My Lyme doc used both ELISA and W.blot on me and another person in my family, and both tests came back positive on us, but it doesn't always. Bottom line: if ELISA and/or W.blot tests are positive, the test is reliable, but if those tests are negative, the test could be wrong.
If the ELISA/W.blot tests come back negative, then the IGeneX tests are good to have done, because IGeneX tests do *not* rely on immune system activity. That's why our doc used both kinds of tests (ELISA/W.blot *and* IGeneX) just to cover all the bases. All were positive for us, so it was an easy diagnosis.
You say above, "She tested positive (80) on the Igenex IFA, negative on the IgM Western blot (indeterminate for band 39, + for bands 41 and 58). IgG western blot was indeterminate (+ for band 31, ++ for band 41)." To my understanding, ANY positive result and also any indeterminate result should be assumed to be Lyme (unless the doc retests and gets negatives or other odd possibilities).
IgM is short for immunogolbulin M, and IgG is short for immunoglobulin G. Both are the reaction of your immune system to a Lyme infection, it's just that the IgM is made by your immune system early in the infection, while the IgG is made later in the infection. Both tests are helpful, and a wise doc knows that.
This being autumn and summer having just ended, it's not uncommon for newly infected people to show up feeling lousy this time of year, once the Lyme ticks have done their dirty work.
About how many positive 'bands' are needed to document a Lyme infection, I would press the doc to do all the various Lyme tests just to be sure ... and if the doc says there aren't enough positive (+) bands to make a diagnosis of Lyme, I would take the printed test result to another Lyme doc for a second opinion, because there is *something* causing that positive reaction -- it may be a weak positive, but weak or strong, Lyme is Lyme. A good Lyme doc knows that and takes even the weak tests seriously.
It sounds like your daughter's doc is looking for high levels of infection and immune reaction, but Lyme has the ability to *suppress* the human immune system ... with the result that the Wblot and ELISA tests can be wrong, because there may not be enough of a reaction (due to immune suppression) to give a positive result.
All this sounds awfully confusing, I know, but that's why a good Lyme doc is important to have. Many Lyme specialist MDs below to a voluntary group called International Lyme and Associated Diseases Society (ILADS for short, often pronounced EYE-lads). All docs who treat Lyme patients believe they are good docs, but some still look to the older ways of diagnosis and treatment. My Lyme doc is a member of ILADS, which is a good indicator that the doc thinks more progressive thoughts about Lyme and other infections than many other docs do. Oddly enough, the Infectious Disease Society of America (IDSA), a voluntary group for docs who work in the infectious disease field as a whole, teaches its members that Lyme is not very serious and is easy to get rid of with a little doxycycline ... which can work, but once the Lyme infection gets cozy, it needs more and better meds -- and an ILADS doc knows this. ILADS has a website that can help you find a member MD nearby.
I had Lyme and so did my teenager, and an ILADS doc got us well again by using the right combinations of antibiotics. Wishing you the best!
Thank you both for your helpful advice. The most frustrating thing about a possible Lyme diagnosis is figuring out who/what to believe. My daughter is 3/4 through a month of doxycycline & incredibly nauseous with pretty much daily vomiting. We are seeing the ND again tomorrow for results of some tests, and I think I will follow up on Igenex suggestion to have another blood test done to clear up the indeterminate IgG western blot. I have read volumes on the internet about the differences in opinion of the CDC and the ILADs group. I do believe that chronic Lyme exists, just wish there were more definitive tests to diagnose. i have the name of an ILADs doc in New York, and will pursue a referral if we aren't getting anywhere here with the ND.
The IGeneX tests are structured quite differently from the older and less accurate Western blot and ELISA tests. The Wblot/ELISA tests look for the body's *immune system reaction* to the presence of Lyme, but Lyme bacteria have the ability to suppress the human immune system. Result: the Lyme bacteria can be present, but because the tests cannot locate the bacteria, the test comes back as negative: no Lyme bacteria, even though Lyme may be quite present.
The advantage of the IGeneX test is that it does NOT rely on the corruptible immune system reaction, but instead looks in your blood for the DNA (genetic material) of the Lyme bacteria, to determine whether a Lyme infection is present.
It is not uncommon for someone with a raging case of Lyme to be told they do not have it, because the ELISA and Western blot test results for that patient are negative. This is has nothing to do with Lyme being chronic or not ... it has to do with the outdated, often inaccurate ELISA and Wblot tests that are still being relied upon by the old guard in medicine. The result of not properly diagnosing and treating Lyme is a chronic and lifelong Lyme infection, which can also be transmitted in utero to a baby later in a young woman's life.
You mention that you are considering having another Western blot test done at IGeneX: why not have the better test -- PCR -- done instead? W.blot/ELISA tests are passe' in the face of PCR.
I have posted here previously about my own experience: I was quite ill and went through 20 MDs searching for a diagnosis, and because everything else had been tested for (often more than once), Doc #20 had W.blot/ELISA tests run ... and the test results were *positive.* The doc said ever so gently, however, "You cannot possibly have Lyme. I have patients with Lyme ... and they are all near death."
That is how shuttered the thinking is in the medical world. Fortunately for me, an old friend from college days (a highly trained scientist in the field of pharmaceutical chemistry) had had Lyme some years before, and I turned to her for advice. She explained to me the split in the medical community that is still with us today, and on that basis I knew to find an MD who would test and consider the now-outdated ELISA/W.blot tests but also test for the (differently structured) PCR test.
I indeed found a new MD, a Lyme specialist, who remarked that my immune system was quite strong, because I not only showed positive on the ELISA/W.blot tests (meaning I had a Lyme infection), which my immune system (given that I had been ill for several months) would normally have given up by then on the assumption that any bacteria would have been eradicated.
Through the millenia, the human immune system has evolved to remain active in the face of an infection just long enough to have killed any bacterial infection we may encounter. Lyme however is a mutant from Mother Nature, outlasting the usual time frame to kill off a Lyme infection.
That is why antibiotics (which stand in and do battle on behalf of our immune systems) need to be given for months-long periods of time to kill off Lyme entirely. There are a few other infections that have the same aspects of long infection life, including (as I recall) leprosy. Unfortunately, the docs who 'discovered' Lyme not long ago did not recognize the long life cycle of Lyme, and so continued to use the normal short course of antibiotics to kill Lyme as though it were an earache.
Unlike leprosy, however, Lyme doesn't have your limbs dropping off, so it is easier for unaware MDs to shrug off continuing post-treatment Lyme symptoms as incidental and not as evidence of *a still-active infection.*
My teenager and I both tested positive for Lyme and babesiosis (a common co-infection of Lyme), tho she protested all the way to the doc's office that she 'felt fine'. Only after antibiotic treatment was completed some months later did she sheepishly tell me that she could, in hindsight, now realize that she really had been ill, but had thought it was just the consequences of being an active and busy teen with a ton of school, sports and social activities going on.
I am not someone to run to the doc every time I get the sniffles ... including years ago (long before my Lyme encounter) when I got appendicitis and just brushed it off as indigestion, including *after* my appendix ruptured -- it didn't hurt much at all after it blew, so I figured I was okay. Uhhhh, wrong. I nearly died.
I have as a result learned to respect Mother Nature a good bit more, but am not a wuss afraid of my shadow. I tell you this as framework for strongly urging you to get your daughter to a Lyme specialist asap. You will not be sorry.
Let us know how we can help, and keep us posted, okay?
looks like I accidentally posted two similar posts ... I got interrupted this weekend and didn't realize I had posted the other one. Sorry for the duplicate.
We did have the Igenex PCR tests done, they came back negative. It was Igenex who suggested an additional test (#489 I believe ) to clarify the indeterminate IgG W blot, as she tested positive for only bands 31 & 41 w 41 being not necessarily specific to Lyme.
I just did some searching online, and I see a good bit of discussion about lack of clarity on some of the tests, so I am understanding more of the complexity you are dealing with. I would do what you are: plowing ahead to get as solid a diagnosis and treatment plan as you can, and then try treatment by the doc(s) you find most sensible and grounded. If you still come up with no solid approaches, then yet another MD may have additional views ... It is indeed difficult to be on the leading edge of a relatively new and unclear ailment like Lyme.
If you are not already keeping full copies of *all* test results, I would get a complete set of everything done by all the docs so far, and ask someone (family or friend) to organize the test results by date and put it all in a three-ring binder.
Lyme is so 'cutting edge' in medicine that it may take a bit more searching to find an MD who can see different thoughts from those offered by the docs already seen. It sounds like you are well on the way to finding the answers, and I admire your persistence. Please let us know how it goes and if we can help somehow. All good wishes to your whole family -- J
Whoops! Hit a button & posted too soon....I will finish what I was saying.
The Fibro & CFS diagnoses were hard enough to obtain, and then to figure out how to treat, and the possibility of Lyme just adds to the confusion. We have seen both the Naturopath and the Fibro specialist this week and fortunately they are agreeable to work together. Though I don't necessarily have the greatest faith in the testing methods for food intolerance by the ND, I am suspending my judgement and we are going with the restrictive diet and supplements suggested. Also continuing the previously tolerated meds for Fibro. Have agreed to the additional Igenex tests. One day at a time....
Good for you for charting such a thoughtful course --
I would be cautious about the fibro/CFS diagnoses ... docs who adopt those approaches are, to my reading, rejecting the ILADS model of diagnosis and treatment, which model is in accord with much of mainstream medicine (other than the strangely stubborn views of non-ILADS MDs).
While non-ILADS MDs who do not follow the ILADS approach to diagnosis and treatment will scoff at ILADS docs, those non-ILADS MDs don't realize that they are embracing the illogic of fibro and CFS and willfully ignoring the solid diagnosis and treatment work done by ILADS MDs.
In other words: imo, embracing fibro and CFS as an accurate and useful diagnosis is not far from embracing a few weeks of doxy as sufficient against Lyme, with any residual symptoms being attributed to ... fibro or CFS.
If you have not read Dr Burrascano's writings on diagnostic and treatment of Lyme and its co-infections, I recommend it (search for his name onlin; you'll find it). He is very much in the ILADS frame of mind and has been working in the Lyme field for quite some time.
I don't understand the rejection of antibiotics when it comes to spirochetal infections like Lyme, and a family member and I were treated with certain antibiotics for several months (not weeks, which an earache deserves), and we are entirely clear of Lyme both on tests and in how we feel.
Lyme being in the same bacterial family as syphilis says a lot.