I'm new, and suspecting. Did anyone with chronic Lyme test positive on the ELISA?

I apologize that this is long. I am extremely grateful to anyone who takes the time to read it.
I will start off by saying that starting about 6 years ago in 2010 I was living in and working a landscaping job in what I did not know until recently is an endemic area. I never knew why, but that summer that I was landscaping and clearing brush I became severely ill on and off for about 3 months. Vomitting, nausea, exhaustion, diarrhea. It just came on and BAM I was ILL. I got a new kitten during this time, and I did have a quarter sized bulls eye rash on my stomach which I attributed to ringworm from the kitten.
My family will even tell you, since then, my health hasn't been quite the same. After this happened I had chronic yeast infections, and started getting yearly UTI's, I get every sickness 10x worse than anyone else.
Antibiotics have become my enemy. In 2013 I was put on minocycline (for acne) and in 2014 ciproflaxacin (for a UTI symptoms, even though urinalysis showed I didn't have one). Both time I developed crippling joint pain and muscle while on the antibiotics. However, the 2014 experience was far more intense, to the point I could barely use my hands because of the pain. Once I got off of the meds, I went back to being "normal". This summer a doctor thought I had strep throat after I complained it was sore (tested negative on swab I later learned) and the ammoxicillan made me vomit, diarrhea, and severe fatigue for 2 days straight. I have never felt so ill until I stopped it.
Around Christmas 2014 I began having body wide muscle twitches and muscle pain that migrated place to place. I felt like someone was constantly throwing baseballs at me with the muscle pain. I felt down, and absolutely exhausted.
I then got pregnant and all of these symptoms disappeared. I did not have an easy pregnancy, and my baby was born early but was healthy.
6 weeks post pardum everything from 2014 came back, worse. I had a nasty spell for a few weeks of all of the same symptoms and more that come and go - muscle pains, fatigue, twitching, this time inner tremor (feels like a phone on vibrate inside of me) severe anxiety, nausea, earache, dizziness, pounding heart, irritable bowel, foggy memory, when symptoms are bad I mix up words, slightly high blood pressure, extremely short and painful periods which symptoms seem to ramp up more. Everything seems to come and go, sometimes for a couple of months I'm fine. Then I'll have these hellish episodes where I get all of the symptoms coming and going and it's BAD BAD BAD. Sleep 12 hours a night with 2 hour naps and still can barely funtion. The twitches are pretty much daily but they worsen when I'm having a bad episode as I call it (which usually lasts a few weeks). They just feel like popcorn, not painful, a jump here a jump there but annoying and concerning.
For the past 2 years the doctors have been calling this a mystery. It's been "stress", "post pardum" "postural changes" "viral infection" "anxiety". I have seen several doctors.
SO.....my doctor did a full load of blood work on me and everything came back spic and span. I pass neurological exams with flying colors, no weakness. I said if you try to give me zoloft again I am going to get mad. I know in my heart this is something more. They can't see it physically.
I mentioned Lyme and they are sending me for an ELISA. I am wondering a couple of things: Has anyone on here ever tested positive on this test, particularly with long term untreated Lyme. Also, is it best to wait and go in for testing when symptoms are bad, or will the amount of bacteria in my blood be stable regardless of how I am feeling?
I only recently learned about Lyme. I had never heard of it. I am shocked to come across something that seems like exactly what I have been suffering with, yet no one knows about. If you have similar symptoms or a similar story I would love to hear from you too. I feel like maybe I really am crazy. :(
p.s. I am in Canada.

Hi Acanada - welcome to our community.

I am also from Canada - BC.

I'm thinking you will get a two-tiered test. If the Elisa is positive, they will do a Western Blot.

I had an IFA (similar to the Elisa) and it was negative, so the WB wasn't done.
Both the Elisa and IFA are poor tests. They often produce false negatives.

You should consider testing through Igenex.

I tested through Igenex Lab in California. You can phone them, they will send you a test kit..just get a Dr. to sign the lab req. The Lyme Western Blot IgM and IgG - both tests total $210.
You take it to a lab - Life Labs will take your blood and send the test kit to Igenex via Fedex.
Three weeks later you will have your results.

You are NOT crazy - you are sick....and you're taking the right steps to get better.
It does sound like you could have Lyme Disease - from your symptoms and time-frame.

Would you mind sharing what Province you live in?

I thought chronic lyme was when it had disseminated : i.e. later stage...not acute.

Are you talking about PTLDS?

If you still display symptoms, then you haven't treated long enough.

Yup - basically if you don't catch it early on - it's usually more difficult to treat.

Traveler you will have to tell me about Dr. Master's sometime. He trained our LLMD and he speaks highly of him and also says he was one of a kind :).

Acanada - my initial tests was a negative on the western blot but a positive Elisa. My neurologist said I was definitely symptomatic and suggested I see a Infectious Disease doctor. After two phone calls to ID docs who did not treat Lyme, I found a Lyme Literate Medical Doctor close to me to get treated by.

No matter what the tests say you sound very much like many of us on this site. Lyme is a clinical diagnosis and I hope you can find someone soon to treat you!!

One thing to keep in mind is do not be discouraged if the elisa comes back negative as it misses more cases than it picks up. I had a total of 2 negative elisas and 1 negative western blot but am in treatment and am getting better. And now that I am in treatment my llmd has tested me after 2 months on abx and bam I am positive. so if you have had it for a while there is a good chance you will test negative for a while anyway.
But you are certainly on the right track and as others have said get to an llmd.
Best regards,
Nick

Girlie said...
Hi Acanada - welcome to our community.

I am also from Canada - BC.

I'm thinking you will get a two-tiered test. If the Elisa is positive, they will do a Western Blot.

I had an IFA (similar to the Elisa) and it was negative, so the WB wasn't done.
Both the Elisa and IFA are poor tests. They often produce false negatives.

You should consider testing through Igenex.

I tested through Igenex Lab in California. You can phone them, they will send you a test kit..just get a Dr. to sign the lab req. The Lyme Western Blot IgM and IgG - both tests total $210.
You take it to a lab - Life Labs will take your blood and send the test kit to Igenex via Fedex.
Three weeks later you will have your results.

You are NOT crazy - you are sick....and you're taking the right steps to get better.
It does sound like you could have Lyme Disease - from your symptoms and time-frame.

Would you mind sharing what Province you live in?

Hi there. I am from the island and now living in Calgary . We have Calgary Lab Services here, not sure if they operate the same as Life Labs does. Would a walk in clinic sign the forms for igenex?

Acanada said...

Girlie said...
Hi Acanada - welcome to our community.

I am also from Canada - BC.

I'm thinking you will get a two-tiered test. If the Elisa is positive, they will do a Western Blot.

I had an IFA (similar to the Elisa) and it was negative, so the WB wasn't done.
Both the Elisa and IFA are poor tests. They often produce false negatives.

You should consider testing through Igenex.

I tested through Igenex Lab in California. You can phone them, they will send you a test kit..just get a Dr. to sign the lab req. The Lyme Western Blot IgM and IgG - both tests total $210.
You take it to a lab - Life Labs will take your blood and send the test kit to Igenex via Fedex.
Three weeks later you will have your results.

You are NOT crazy - you are sick....and you're taking the right steps to get better.
It does sound like you could have Lyme Disease - from your symptoms and time-frame.

Would you mind sharing what Province you live in?

Hi there. I am from the island and now living in Calgary . We have Calgary Lab Services here, not sure if they operate the same as Life Labs does. Would a walk in clinic sign the forms for igenex?

Vancouver Island?

I don't know if a walk-in clinic Dr, will sign Igenex lab req. Do you have a GP in Calgary? A chiropractor can sign, too.

Here in BC, a ND can sign the lab req and take it to Life Labs.
That might be an option for you, as well...find a Naturopathic Dr.

I believe there is a ND who treats lyme in Calgary...if you email me I will send you the information. She would most likely have the test kits...and do the blood draw - for a fee.

I have Chronic Lyme (from a tick bite 35 years ago). Diagnosed July 2015. I had 4 ELISA tests within the past 5 years and all were negative. It wasn't until I found an LLMD who did a culture test and Western Blot and those both were positive.
Oh, and welcome! Though sorry you're having such a rough time! :(

Post Edited (TrialbyLyme) : 9/23/2016 4:22:34 AM (GMT-6)

I don't have much to add here. I just wanted to let you know that the elisa is not always reliable as others have said, I had two negative elisas before getting tested through Igenix which was positive. Also with the Western Blot it can read negative but have enough indicators to point to lyme.

It certainly sounds suspicious of lyme. I am glad you are looking into that.

I'm so sorry that your GP has those feelings, but it's not unusual for those that don't understand the testing to think that way. There really aren't very many false positives at all, especially if Lyme specific bands are being reported. You can sometimes get hospitals to sign for it, or another doctor's office. I bet Girlie will have some good ideas.

Yes, it's quite common to have symptoms wax and wane over the course of time. No, it's not in your head, it's quite common for symptom severity to change and for the symptoms to change what areas are having the more severe symptoms.