posted
I'm 38 years old, and six months ago I started having knee and hip pain, which has since then spread to my feet, shoulders, back, and left elbow. The pain is minor and only in one or two places at a time. I also have a little mental cloudiness/memory issues and fatigue.
Three months ago my family doctor did an ELISA test by my request along with a bunch of other tests (CBC, liver, thyroid, etc.). The ELIZA came back negative so he suggested Aleve for six months and then he'd retest for Lyme and arthritis.
I recently went to my local Lyme-friendly doctor (he says he's no expert), paying out of pocket, of course. I just got the results of my Western Blot from IGeneX and am not sure what to make of them. He told my wife the results over the phone, and I got a print out today. Since he thinks I was exposed to something in the Lyme family, he started a common treatment plan for the next month to see how I respond.
According to IGeneX (and of course CDC) standards, I am overall 40 Equivocal for Lyme/Borreliosis. For peace of mind I'd like to know if I'm probably positive after all or if I should start looking elsewhere for answers. I've looked at some of the Western Blot interpretation pages on this site and others and have started to form my own opinion, but I'd like to hear what the consensus is from those who know more than me.
Here are any non-negative bands:
IgG: **31 IND **41 ++ 58 +
IgM: 18 + **39 IND **41 IND
Thanks in advance for any insight!
Jason
Posts: 4 | From Pennsylvania | Registered: Dec 2013
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posted
IGenex is one of the more sensitive labs. How long ago do you believe you were infected? Were you bitten by a tick and where? Did you have a rash? When? In what geographical area were you bit?
Some possibilities:
You don't have Lyme You have something else that is cross-reacting The test was to early - how long from suspected bite to test? You were infected by an unusual strain or species that's not picked up well by test
If I were you, I would get tested at StonyBrook lab with their Western Blot plus a C6 peptide just in case you have an odd species. Check the box asking for all bands to be reported - not just CDC bands
The new ALS culture might have a contamination problem so I'd wait till they respond to concerns before using the culture.
Don't bother with Labcorp or Quest - you will be more negative
Posts: 51 | From California | Registered: Aug 2013
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posted
I don't think you can afford to ignore ANY Lyme specific bands such as 58, 18, 39 or 31 .. doesn't matter if they are "IND" or not. It is a weak positive.
Do you have a history of tick bites? Being in Penn alone is a huge risk factor.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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posted
The joint pain started this past June/July. No other noticeable symptoms unless you could years of poor memory (I'm not sure). My dog (Golden Retriever - she's fine now) was diagnosed with Lyme this past summer during a routine vet visit. I don't know of any tick bite, though I have had dozens of wood ticks on me in recent years. I live near the Appalachian Mts. in Pennsylvania, where I used to enjoy running and hiking in the woods.
I will look into Stony Brook and will avoid the other two labs.
What is the new ALS culture problem you mentioned?
Thanks!
Jason
Posts: 4 | From Pennsylvania | Registered: Dec 2013
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
Testing is very flawed (the western blot only tests for antibodies). The sicker you are, the more likely your test will be negative because your immune either gives up and doesn't make the antibodies or Lyme hides from your immune system and it can't even detect it.
I don't remember a tick bite either, but I know plenty of dog owners whose dog has Lyme and they have Lyme too.
Posts: 2839 | From California | Registered: Jul 2012
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posted
"What is the new ALS culture problem you mentioned?"
For now the ALS culture is up in the air. A culture is by far the most obvious way of detecting a ongoing infection if its both possible and free of contamination.
And it appears they might have a contamination problem. They have removed their paper and other supporting information until they review the issues and respond.This what they say so far:
Advanced Laboratory Services is aware of the publication of the following article: Johnson BJ, Pilgard MA, Russell TM. Assessment of New Culture Method to Detect Borrelia species in Serum of Lyme Disease Patients. J Clin Microbiol. 2013 Aug 14. We intend to respond directly to the authors of that article and/or the journal concerning the findings in the article. We have no further comment and no one is authorized to comment on our behalf.
They have 2 additional studies in process and I'm sure they will address the issues found in the first study or possibly explain them.
In any case, until ALS responds and reports on the additional studies, its probably best to wait.
All that being said, a culture without contamination is by far the most effective method of finding an infection. Borrelia blood culture is difficult because there are very few spirochetes in your blood once they hide and change forms. I suspect ALS will find the source of contamination, eliminate it and then this will be the "Gold Standard" test.
In the mean time, you could retest at IGenex and try Stonybrook since the antibodies in your blood do fluctuate and become bound and you might have caught a low point.
Both IGenex and Stonybrook developed their own tests, they are not pigeonholed into the rigid FDA B31 strain based test. By using multiple strains in their antigens, they greatly increase the odds of picking up genetically diverse Borrelia.
In addition, the C6 has been shown to have problems with some US strains and decays over time but is the best to pick up odd non-burgdorferi species or very divers strains like you might find in CA or the South or outside the US.
Posts: 51 | From California | Registered: Aug 2013
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t9im
Frequent Contributor (1K+ posts)
Member # 25489
posted
Hi Jason:
First you need to understand there is a controversy in diagnosing and treating Lyme and Tick Borne diseases.
Then you have to come to realize you have to be your own advocate.
Part of the controversy is the tests.
The CDC is trying to discredit the Advanced Lab culture test as it discredits their two tier testing standard they insist on (Elias followed by a Western Blot).
They continue to try and discredit IGeneX as it produces more positives than Labs that use the NIH standard test kit.
IGeneX is fine to use but will not be helpful if you go to an IDSA physician to try for insurance coverage.
Two key advantages of IGeneX is they test for all bands (the NIH test kit excludes a couple of Lyme specific bands 31 and 34) and two strains.
Now your actual Western Blot test. Band 41 is not specific to the lyme borrelia but is specific to borrelia. It is the antigen reading of the flagella of a spirochete bacteria (syphilsis, relapsing, lyme and other borrelia infections can have band 41)
Bands 31 and 39 are specific to Lyme. While you are not positive there is an antigen response, just not strong enough to be positive.
A LLMD would consider your results a confirmation to exposure to the Lyme borrelia and with your symptoms start treating.
They would then rerun the WB at a future date.
Patients have been known to have more positive bands after a course of antibiotics.
miyamotoi has been alleged to be a CDC troll on Lymenet so one has to be careful with reading his opinions.
My experience (I don't have Lyme, my 13 year old does have Lyme and Bartonella).
One time had Igenex & Stoneybrook Western Blots (each had different results).
On 11 Western Blots we've never had a "positive" result (2 of 3 or 5 of 10), but positive Lyme Bands and band 41. If we could use the different positive bands over the years then she would have been considered IGeneX positive.
One Western Blot was done which came back negative but this was the same blood draw when we did the Advanced Lab and cultured positive.
Just to show the results can have plenty of false negatives.
If your MD is only providing 1 month of Doxy or Doryx this will probably not be adequate treatment.
I'm not an MD, just a father who, after 4 years, has a decent education in this area.
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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posted
Thanks Tim, for your input. I appreciate the info and advice you have provided. I hope that your son is on the 'upswing'!
Below is what was on my mind during the day today, when I couldn't post to the forum. I think my main question about what causes 'the bands' was mostly answered. I guess being precise as possible about the specific microorganism that is at work leads to the most effective treatment. I just don't want to get hung up on whether or not I need a positive Western Blot to prove that I have Lyme, when it sounds like testing isn't usually definitive...
---
I understand that Borreliosis is difficult to diagnose serologically, and that it should be diagnosed clinically. When I look this description of ‘Classic Lyme’ by Dr. Burrascano (below), eight of the ten statements describe me. That being said, after learning more about the different Western Blot bands and their significance, one thing is unclear to me: What would cause an indeterminate rating, or even a + or ++ for a given band (esp. a specific band like 18, along with 41) if it not the presence of B. burgdorferi or a related species? In short, does six non-negative bands mean that I am dealing with something tick/spirochete-related, or it is possible that something else can cause these results?
Thanks again!
Jason
CLASSIC LYME (Bb infection)- · Gradual onset of initial (viral-like) symptoms- this often makes it difficult to pinpoint when the infection began. · Multisystem- almost always, in disseminated stages, involves more than one part or system (i.e. joint pain plus cognitive dysfunction). · Migratory- first a knee will hurt, then over time this may lessen and the elbow or shoulder acts up, and later the joints calm down but headaches worsen. · Stiff joints and loud joint crepitus, especially the neck (“Lyme shrug”). · Headaches are often nuchal and associated with stiff, painful and crepitant neck. · Afternoon fevers, often unnoticed- most Lyme patients have subnormal temperatures in the AM but rise to 99+ by early to mid-afternoon. No obvious sweats. · Tiredness and limited stamina- often is a strong need to rest or even nap in the afternoon, especially when the flushed face and elevated temperature appears. · 4-week cycles- Bb activity, and thus symptoms, wax and wane in a cycle that repeats roughly every four weeks. This cycle, if clear, can guide your treatments. · Slow response to treatment, with an initial symptom flare in most (“Herxheimer-like reaction”) then improvement over weeks, punctuated by the monthly symptom flares. Likewise, if treatment is ended too soon, an initial period of well-being will gradually, over a few weeks, be replaced by a return of symptoms. · EM rash in 25% to 50%
Posts: 4 | From Pennsylvania | Registered: Dec 2013
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t9im
Frequent Contributor (1K+ posts)
Member # 25489
posted
Hi Jason:
The WB band readings are your bodies antigen response to specific proteins.
If there is no response the result is negative (no shading on the WB reading).
If the response is strong enough to reach a certain level it is then positive (I believe IGeneX goes up to +++).
If the results show a response but not strong enough to be definitive and positive it is equivocal / indeterminate.
Most labs only provide the result - positive or negative. They also won't provide the band readings (Quest and the Labs Hartford and Boston Children's use) unless the physician asks for it when the test is ordered.
Lab Corp and the specialty labs do provide the band readings (positive, negative or equivocal / indeterminate).
When we had the Stonybrook test the results included the actual "picture" of the bands.
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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I don't know of any tick bite, though I have had dozens of wood ticks on me in recent years. I live near the Appalachian Mts. in Pennsylvania, where I used to enjoy running and hiking in the woods.
- There's your answer. A tick is a tick is a tick.
Having a pet and hiking/running in the woods puts you at high risk also. So now you know you've been exposed.
Nothing but Lyme can cause a "Lyme specific" band to show up.
And ignore those who say that the Advanced Culture test is not credible. They are the naysayers and are not in our "camp."
You could also read some of the replies on this thread and learn a lot.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
"(I believe IGeneX goes up to +++)"
I don't know how high it goes, but I got ++++ on a band on my last test.
The strangest thing for me is I'm CDC positive through Labcorp (test for 2012) and not CDC positive through Igenex (test 2013 with reinfection and waaaaaaaay worse symptoms) .
Through Igenex I have 4 positive bands and 3 ind bands, but they aren't the correct CDC bands!
This is why the testing is sooooo messed up.
You can be sick as a dog and the CDC will say you're just fine.
Posts: 2839 | From California | Registered: Jul 2012
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