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Update: Canadian test result (ELISA/blot) - 2nd "false positive" and also anaplasma

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Posted 9/9/2015 4:32 AM (GMT 0)
(Update Sept. 15, 2015 posted below)
I've searched this site but can't find any similar info. I was told I tested positive for Lyme on Aug. 7/15, but on Aug. 27/15 my Dr. said it was a false positive. I got my records today from the Dr.'s office, I'm told it would be an ELISA followed by Western Blot. But... here is all it says:

Borrelia (Status: Final)
Borrelia burdorferi AA Reactive.
Ab IgG+IgM (Enzyme Immunofluorescent Assay)
{VERY ABNORMAL}

Borrelia burgdorferi Nonreactive.
Ab IgG (Immune Blot)

Borrelia burgdorferi Nonreactive.
Ab IbM (Immune Blot)

Borrelia burdorferi Send a repeat specimen in 4 weeks.
Serology result



Both cytomegalovirus and Epstein Barr virus (mono), came back negative. My Dr. consulted with an infectious disease specialist and they decided I was a false positive for Lyme based on the above. They did repeat the Lyme test Aug. 31/15 (no results received yet), as well as syphilis and a few others (no results yet).

I did see a fairly LLND, who agreed with Lyme symptoms etc., has kept me on doxy treatment and sent away for co-infections tests to IgeneX. We didn't send a Lyme test to IgeneX because it was the day before my Dr. called me to say he now thought it was a false positive and I might have relapsing fever. LLND felt we should wait for all test results and keep me on doxy until then. I see my GP in the morning, LLND in 2 weeks (though I can consult earlier if I need to).

Any input? I have a bunch of blood test results too. Consistently low Hemoglobin and Hematocrit. On day I was tested for Lyme, I had notable C Reactive Protein (214, when normal is between 0-5). There is also a note from the pathologist about increased alpha-1, alpha-2, and gamma globulins, all of which were above normal range.

unefaune

Post Edited (unefaune) : 9/15/2015 11:51:34 AM (GMT-6)

Posted 9/9/2015 5:10 AM (GMT 0)
There is no such thing as a false positive. The test are designed to look for your bodies antibody response to Lyme in your system. They are testing for Lyme specific bands which means you could not react to a band if your body had not created antibodies in an attempt to fight against Lyme.

The problem is that infectious disease Dr's are the most outspoken anti Lyme advocates. They don't believe the disease exists. Those of us that suffer from the disease often want to challenge them to be bite with an infected tick and do nothing for a few years and then and only then talk to us.

Your GP will agree with the ID Doc. You need to work with the LLND.

I'm in the States and not familiar enough with the Canadian tests. One of the moderators is Canadian and could still come on tonight.
Posted 9/9/2015 5:29 AM (GMT 0)
Thanks for your response jrpsf. Unfortunately my experience parallels your post - before this I had been pretty trusting of our system - but I was definitely taken aback when my GP told me that he and the ID specialist determined that I didn't have Lyme because we "don't have it in this area."

I wonder how the first test can have a notation of "very abnormal" followed by the IgG and IgM being non-reactive.
Posted 9/9/2015 10:58 AM (GMT 0)

unefaune said...
I wonder how the first test can have a notation of "very abnormal" followed by the IgG and IgM being non-reactive.

This is how things can go with Lyme testing....either due to faulty testing itself....or a change in the patient's antibody response.

There is no such thing as a false positive with Lyme if you have Lyme symptoms.

I do hope your LLND has ILADS training because Lyme is a clinical diagnosis - based upon symptoms. Treatment should not be withheld while waiting for test results.
Posted 9/9/2015 1:55 PM (GMT 0)
Thanks cd3764. The tests above were performed on the same blood sample. I'm going to ask my GP today if I can see the blot bands, but I'm not holding my breath.

I am still being treated (200mg doxy twice a day) through the ND. I didn't mean he'd take me off when test results came back, just that he would reassess at that point - what if I did test for something else?

My GP on the other hand (because of my reading, this didn't surprise me) said I had been "adequately treated" after 21 days of 100mg doxy twice a day.
Posted 9/9/2015 2:23 PM (GMT 0)
I would say this, you reacted positive to something with the first test, obviously it is important! Your Dr. thinks that it may be relapsing fever instead of Lyme and the question I have is it really that big of a difference?
What it does to you, your treatment options and your symptoms can be almost the same! Both are tick born spirochetes. It gets even worse when you consider all the different strains of borrelia that could give you a similar test, they only test for burgdorferi. As if there is only one pathologic spirochete causing these problems in the population. It is good that they tested for the cyto and syphilis, but I would run away form this Dr. if they wont treat you.
The real crime is they don't have test for all of the other strains and then because you didn't fit the criteria they dismiss it all like it doesn't exist. Please don't let them.
Posted 9/9/2015 3:37 PM (GMT 0)
Unefaune - I'm Canadian, too.

So, in Canada it's a two-tiered test. I had it done, and was negative on the first tier (IFA), so the second test wasn't done (WB).

Looks to me like you were positive on the first tier and negative on the second.
So, they call it a negative.

They use the same blood sample...and it's usually several weeks before you get the second test results.
So,that's why they call the first test a 'false positive'

Just to let you know...I tested negative on the first test..so they wouldn't even do the second test.
I then tested Igenex Positive.

Do not lose any sleep over the Canadian 'worthless' test. I have read tons of stories, where Canadians have tested negative on the first tier and had to send their blood to Igenex. AND they did/do have lyme disease.

I don't know much about the IFA and how it differs from the ELISA...sorry!
Posted 9/9/2015 3:51 PM (GMT 0)
Unefaune - Please let us know what your LLND says...if you feel you need a positive test, then do another one with Igenex (WB - IGM and IGG). That would be your best chance for a positive test.

Good luck!
Posted 9/10/2015 4:06 AM (GMT 0)
Thanks gregkdc and Girlie.

It's not so much that I *want* a positive test. Nobody wants Lyme Disease - it's that, what else am I really looking at?

I guess I don't want to believe our health system is so broken, I don't want to believe MY doctors and infectious disease people are stupid or ignorant or don't care or don't listen.

Today my GP told me I don't have syphilis (not a surprise) and apparently the person interpreting the Lyme tests at CDC has a special interest in Lyme. (One would hope??)

Then he told me that this ongoing headache is just from stress or tension. Once again, I have been adequately treated, there is no Lyme in our area, and I don't need any more antibiotics. (I didn't even ask. This was like a prepared speech he gave me.)

So what would he say if this next Lyme test comes back positive?

I should be receiving my co-infections results from Igenex in the next week as well.

unefaune
Posted 9/10/2015 6:26 AM (GMT 0)
"It's not so much that I *want* a positive test. Nobody wants Lyme Disease - it's that, what else am I really looking at?"
Exactly!
I had run out of tests/scans, etc. to do, and I had been ill for almost a year and a half with no answers that made sense...When I finally did the Igenex test and it came back positive, I walked in the door and when my husband walked toward me - I teared up as I told him the news...but they were happy tears...we hugged...and I cried. - Relief - something to treat, finally.


"So what would he say if this next Lyme test comes back positive?"
You didn't retest for lyme, right? You're waiting for co-infection test results only?
Posted 9/10/2015 2:25 PM (GMT 0)
Yes, I did re-test for Lyme. It will be the same Canadian lab. Should be hearing back any day now. However I wonder how those results will go, it was approx 3 weeks into treating with abx (6 days into 200mg doxy twice a day). Now, I'd rather be killing the Lyme through treatment than "hoping" for a positive test... but I hope that doesn't screw the result!
Posted 9/10/2015 2:34 PM (GMT 0)
Being on antibiotics can provoke a negative test results. You should be off antibiotics for at least 6 weeks before testing.
Posted 9/10/2015 2:44 PM (GMT 0)

JessicaMommy said...
Being on antibiotics can provoke a negative test results. You should be off antibiotics for at least 6 weeks before testing.

I'm not 100% sure about this but I have no doubts that it's not worth the risk of not treating just to get positive results.
Posted 9/10/2015 2:52 PM (GMT 0)
I thought it was recommended to be off antibiotics for at least 6 weeks before doing a Lyme Disease tests because this could increase your chances of a false negative Lyme test as the lyme can go into "hiding" or cyst form.. therefor the numbers of bacteria would be too low in the blood at the blood draw to detect antibodies?
Posted 9/10/2015 3:12 PM (GMT 0)
I wonder too. What I can see on the lab result is a recommendation to get re-tested in 4 weeks. Anyway, this test is "free" because my GP ordered it, but I'm not putting much stock in it.
Posted 9/10/2015 4:37 PM (GMT 0)
Chances are that it's not a good lab if it's "for free" - it's likely a lab similar to Labcorp here in the States. Their techs aren't trained on how to perform this test properly (they don't give it enough time first of all -Lyme is one of the slowest replicating bacteria) and they often don't use the proper testing medium (the stuff in the petri dish that they use to run the test).

Often when a patient has a negative test result even though they can be diagnosed clinically, the LLMD will prescribe a course of abx for several weeks. But, as stated, the patient needs to be off of the abx for several weeks for the body's immune system to ramp up it's actions enough for a positive test result.

But that doesn't always work either. My case is the perfect example of this last possibility. It took a full year of Mino, then I had to be off of abx for a couple of months before I ended up with a CDC positive Lyme and RMSF test result.
Posted 9/10/2015 5:01 PM (GMT 0)
Thanks Traveler.

When I say "free" I mean - I'm in Canada so if my GP orders a test, I don't pay out of pocket for it. So the first test (blood taken end of July, result August 7) and the second (blood taken Aug. 31, waiting for results) were both sent to the same lab, which says CDC (that is the British Columbia CDC).

My GP tried to reassure me yesterday that the person analysing the test at CDC had "a special interest in Lyme" so I should have nothing to worry about. I really have no idea what this could possibly mean, maybe that is the lab tech or the pathologist or the head of the dept. Maybe they know about Lyme or maybe they don't. I wasn't given anything more specific that what I posted at the beginning of this thread.

I presume (from my reading here... could be wrong!) that with the blot test they are working in the conservative parameters of needing 2 out of 3 bands in one section and 5 out of 10 bands in another to test positive.

unefaune
Posted 9/10/2015 5:22 PM (GMT 0)
I understood that, Unefaune. It's just like working with most insurance companies here in the US. As long as the dr orders it, it's paid for, or at least mostly paid for.

It wouldn't matter how much of a special interest a person has in any testing, if they aren't given the proper materials to work with, or haven't been trained properly on how to perform the test for the best results, the tests are even more faulty. And if the doctors or whoever interprets the results don't recognize that even one Lyme specific band means you have Lyme, then it's still the same end result. You fighting to get the treatments you need.

But still, I do wish you luck in getting a good result!!
Posted 9/10/2015 5:56 PM (GMT 0)

JessicaMommy said...
Being on antibiotics can provoke a negative test results. You should be off antibiotics for at least 6 weeks before testing.

This is not true. I took my first Igenex test at my first LLMD appt. It came back suspicious. In the mean time I was rx'd 2 abx's. I retested after 3-6 weeks on the abx's with no break and was CDC positive.

I know the LLMD office I started at knew what they were doing in terms of Igenex testing. Igenex is run by Dr Nick Harris. He's not a practicing Dr. I think he's a biochemist or something like that. His brother Dr S H is an LLMD and has a practice near by. Dr S H is one of the board of directors at Igenex.

As a side note-Dr S H has had many LLMD's and ND's work with him, gain knowledge, and then leave his practice to open practices of their own. I know another member posted a link to their LLND's protocal and the LLND trained with Dr H just as mine did. While I never saw Dr H when I went to his practice major kudos to him for training others and than with good will allowing them to leave and take the patients with them to prosper and heal on their own.
Posted 9/10/2015 7:15 PM (GMT 0)
Traveler, I agree with your comments about the issues on the testing.
Posted 9/15/2015 5:50 PM (GMT 0)
Update (Sept. 15, 2015)

Yesterday I received the news of a positive anaplasma result from Igenex co-infection test. I meet with my ND today. He told me on the phone yesterday that since I was still having symptoms, that we should treat with Rifadin as well as the Doxy I'm currently on.

Later in the day I got a call from my GP - the results from the repeated Lyme test (BC CDC lab) came back the same as before. He says it's a false positive and that "they are going to be changing that first test because it's not very good." We are only waiting for a result on the Relapsing Fever test. So his conclusion is he doesn't know what I had/have (unless it's relapsing fever) - currently he says tension headache and issues with sleep.
Posted 9/15/2015 6:01 PM (GMT 0)
I am surprised that your Dr. is using Rifampin to treat the Anaplasma. I hadn't heard of that before. If you get an increase in bartonella symptoms while taking it, that will be a sign that you have bart co-infection.

Regarding the repeat of lyme test - I wouldn't waste any time or energy on thinking about that ...it's not worth the paper it's written on.

Just wanted to remind you - that I had negative result on the first Tier...so the Western Blot wasn't even done. I was Igenex Positive, though a couple months later.

Are you going to be seeing a LL Dr.?
Posted 9/15/2015 6:53 PM (GMT 0)
I had a negative (not even one band positive) for the first year of treatment, so please don't let that bother you. If you have Lyme symptoms, you have Lyme. Your doctor just told you the tests weren't that good - personally I'd remind him of that!! devil

And I agree with Girlie - Anaplasmosis is cured with Lyme treatment, so Doxy is usually all that's needed.
Posted 9/16/2015 3:26 AM (GMT 0)
Thanks for your responses, I appreciate you taking the time.

I also got Igenex negative tests for Babesia, Bartonella, Erlichia.

The ND said he decided to do the Rifampin on the anaplasma because I still have symptoms. At this point I've done Doxy for 5 weeks, so he wants to see if adding the 2nd antibiotic will make any noticeable difference. We'll know in a week.

I did find this CDC article which mentions the use of Rifampin in treating anaplasma: http://www.cdc.gov/anaplasmosis/symptoms/#treatment

As far as LLMD, I will see about getting an appointment - involves travel and time off work. I guess I may have left this longer than I should have, it's easier to see in hindsight. I wanted to get these test results (and in the meantime, I have been on the high-dose Doxy so I felt I was likely being adequately treated) and I've been trying to catch up at work (again, priorities).

I kind of expected to hear from the BC retired doctor who gives free advice by now... but no idea what the turnaround time is.
unefaune

Post Edited (unefaune) : 9/16/2015 7:55:00 AM (GMT-6)

Posted 9/16/2015 12:14 PM (GMT 0)
Hi Unefaune,

I had to edit your post, removed the name of your doctor.
We don't allow dr's names on the forum, out of protection for what they do.

MarieLS
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