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» LymeNet Flash » Questions and Discussion » Medical Questions » Was your first test for Lyme + or - ?

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Author Topic: Was your first test for Lyme + or - ?
SwissPiggy
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Hi, I'm new. How many of you got a negative Lyme result with the first test? I'm referring to people who had illnesses long before they got tested for Lyme. Would you please tell me how you went about getting a proper test/diagnosis?

My Long Story Short
I've been sick for two years, and just heard about Lyme, I was bitten by a tick around two years ago, I don't know exactly the date, but I've been seeing one doc after another for two years now.

I just asked/insisted a Lyme test, I'm waiting on the results, it was just done yesterday. The lab tech did say if it came back positive, they'd test with a more intensive test next.

My lymphocytes are very low therefore I'm concerned maybe my antibodies won't show up on the initial Lyme test.? [confused]
( I can't get a test at Igenex right now, it's too expensive.)

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Lymetoo
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Welcome! I'm off to bed, but will move this to medical questions first.

[Smile]

--------------------
--Lymetutu--
Opinions, not medical advice!

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Jordana
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It's really a crapshoot with those tests. You could have low lymphocytes because they're *very busy*.

I've still never gotten a "positive"western blot or any indication I have any co-infections. It didn't occur to me until I looked over all my cbc-w's over about two and a half years that no matter what was happening, my regular white cell count was *always* normal. Through UTI's and ear infections and an infected gallbladder.

You'll be able to get some information if you have any positive bands at all.

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Robin123
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Hi - you can contact www.lymetap.com about coverage for the IGeneX tests - I understand they cover 75% of testing costs for those who qualify as low income.

Some of us test positive and some of us don't, even when we actually have Lyme. Here is a link from the stickie at the top of Medical Questions, Important Information on Lyme and Co's:

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/3/33085?#000001

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Green_Where_You_Water
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My very first test about 2 years ago for Lyme was negative. I was bitten by many ticks as a child growing up in a wooded area in update NY.

Ive had some strange medical problems since I was about 13 years old, although nothing serious enough for too much of a concern:

Chest pains with no explanation (normal X-rays, ECG, ultrasounds, etc), Joint pain, extreme fatigue, constant migraines,unusual abdominal pain, all with no reason for too much concern according to doctors that I had seen.

I am now 27 years old. I own a gym with my boyfriend and also work from home doing tech support.

about 2 years ago I had such bad knee and hip pain I couldn't walk.

I was told it was tendonitis, which I didn't question too much due to how physically active I was. Although I do recall feeling sick as well and thinking maybe it was the flu combined with tendonitis that was making me feel so bad.

one of the many orthopedics that I saw during this time (since non could seem to find something that would make it better) tested for Lyme with ELISA and Western Blot. At that time Lyme had never crossed my mind.

Both tests were negative. I stopped working out completely and began physical therapy for months with ultrasound, which eventually helped enough that I could function again.

about a year later, I had decided to discontinue my hormonal birth control because I was beginning to experience extreme PMS every month that was becoming increasingly worse. I then had an abnormal pap smear a few months later which prompted a cervical biopsy.

Nothing was found with the biopsy but the entire experience of the procedure was so painful for me I literally couldn't walk or move without pain for at least a week. It took a full 3 weeks to fully recover. The doctors seemed to think this was abnormal and treated me as though I was overreacting.

Turns out I had a bad infection from the procedure.

Once I had recovered from that, I had decided to get a copper IUD for contraceptive since I discontinued the birth control. It was was an even worse version of the previous procedure and I could barley walk out of the office, although I recover quicker, in only about 3 days.

Im not sure if all of this is relevant but it might be which is why Im going so in depth.

after getting the IUD I never returned to normal or functional health. I started loosing my hair, extreme pain throughout my entire body, nausea, migraines, dizziness, pains in my feet, chest pain, and more that I am probably just too tired to think of.

I went back to my OBGYN who insisted that this could not be due to the IUD and referred me to my GCP. I had doubts, but this was my last resort for contraceptive and I didn't want to have gone through that horrible procedure for nothing and take it out for that to not even be the problem.

I went to my GCP who thank god tested for Lyme, which I hadn't thought about since the year before with that orthopedic. She actually didn't even tell me she was testing.

I was totally shocked when she called me a week later to tell me that I had a positive Western Blot test and I have Lyme disease.

I still wonder if I had it all these years and somehow getting the IUD brought it out or something. I am still skeptical of it and wonder if taking it out would be best. Although my LLMD thinks that it is too soon to say that the antibiotics aren't working (I have been seeing her since September but was diagnosed and treated initially in late July)

She thinks the IUD is actually a good option for me right now since antibiotics can make hormonal contraceptive ineffective.

Does anyone else have experience with an IUD and Lyme?

But to answer your question It took about 2 years from the time Lyme was first suspected to receive a positive test. I also tested positive for Anaplasma/erlichia through standard testing as well as CPN. I haven't done any other extensive testing but my LLMD suspects babesia and bartonella as well.

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DanP
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i had 20 years of annual negative blood test results..all from Quest..ikept telling the MD that something was seriously wrong and since I had a house on a barrier island and grew up in Maine, and remembered a tick bite that it was likely I had it

but he relied on the test results!

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steve1906
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.
If I remember right I was tested around 5 times within 3/4 years through Quest.

The last blood test I tested - positive, yes through Quest).

Steve

--------------------
Everything I say is just my opinion!

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LisaK
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yes, my first was negative....and my 2nd, and 3rd, and 4th , and 5th, and 6th.....and 7th and maybe more.

Igenex was the first + I ever had.

--------------------
Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen

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Lymetoo
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Green Where you Water...

Many problems with copper when you have an IUD .. Maybe it messed up your body and enabled the infection to take hold.

--------------------
--Lymetutu--
Opinions, not medical advice!

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SwissPiggy
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Thanks for all,the posts...I'm going to start a new thread about my results.
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optimumpremonition
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Hi, I was wondering if someone could help me determine the likelihood of me having Lyme.

I recently got a western blot done by Medical Diagnostics Laboratories and am not 100% sure how to read it.

It's confusing about what make a band positive. Some appear positive to the naked eye but are they technically positive? The intensity of the band is labelled. As an example: the intensity of band 30 is 077% and band 93 is 065%. The intensity of the band 23 is 034%

Does anyone have experience reading MDL western blot results? This would really help me. I have chronic fatigue and fibromyalgia.

Thanks!

The test results are posted below:

https://dl.dropboxusercontent.com/u/49284732/2016-01-11%20MDL%20Results%20IMG%20of%20IgG%20%26%20IgM%20Bands.png

https://dl.dropboxusercontent.com/u/49284732/2016-01-11%20MDL%20Results.pdf

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Judie
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I don't know how to read the report with the band percentages, but thanks for posting the results. Maybe someone with more experience with reading labs can chime in.

Just remember positive is a positive.

It's like no one is just a little pregnant. You can't just be a little positive.

You either have Lyme or you don't.

Slightly positive is still positive.

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sammy
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I was sick for over 4 years. Had seen over 60 specialists before giving up on doctors. I then put my faith and life's energy in trying to heal myself with all forms of alternative medicine.

When I was literally at deaths door, now not trusting medical or alternative practitioners, I was told to give my current doctor "just one chance". They did a whole battery of testing and started to find out what was wrong with me.

My first Lyme test was through Quest and it was positive. So is possible.

Repeat testing through Igenex showed more positive bands.

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TF
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optimumpremonition, to get more input on your results, I suggest you post a new topic rather than post below someone else's topic. Just click on "post new topic" near the top of the page, above "My Profile."

Your Western Blot lyme test has 2 parts--IgM and IgG.

You didn't have any reaction on the IgM bands. However, you reacted to a number of IgG bands. You reacted to 93, 66, 58, 41, 30, and 23.

Of these, 2 reacted enough that MDL called them positive. They were bands 93 and 30. The rest would be considered indeterminate or mildly positive. MDL wants more than 2 positives to record the results as positive, so they recorded your results as "equivocal" which means not negative and not positive. Same as mildly positive.

The important bands for lyme are 93, 41, 30, and 23. So, you had a reaction to 4 important lyme bands. That is enough evidence to say that you have lyme.

Look at Dr. C's explanation of the Western Blot and you will see the same thing. It is here:

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

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SwissPiggy
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I'm officially crazy. Test came back negative, only one band 41.

The test was done today, but the blood was drawn on the 10th. It would have been shipped from CA. It states it should be refrigerated, but i don't think they send them refrigerated. So if it was traveling three days it would not have remained cool unless it was refrigerated making the results invalid.

Other question. I started 4 days of antibiotics on Jan. 30 and the blood was drawn on the 10th. Do you think the meds would've affected it? I didn't realize until tonight that it had only been a week.

So, possibility exists it was not a good sample. So, now I am going to have to probably wait for another two weeks, for the test to be redone, again. I didn't get the Erch or the Bab results yet. Not sure why.

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Lymetoo
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Which lab?

--------------------
--Lymetutu--
Opinions, not medical advice!

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SwissPiggy
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ARUP
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hopingandpraying
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optimumpremonition - Welcome to Lymenet! PM sent for Louisiana.

You should write a new post in "Medical Questions" instead of adding on to an existing one. That is the section where your post belongs.

I was told by one of the top LLMDs that you only need one band that is Lyme-specific to be positive for Lyme Disease.

You need to be evaluated and treated by a Lyme-literate doctor (LLMD). Non LLMDs have no clue about this horrible disease or its complex treatment!

A LLMD is one who has treated Lyme disease and the co-infections which come with it for many years and has gotten patients well. A good one will follow Dr. B's Guidelines, the "gold standard" for Lyme treatment.

Here is a link for them:

http://www.lymenet.org/BurrGuide200810.pdf

Unfortunately, LLMDs are far and few between. You need to go where they are.

Most LLMDs do not accept insurance due to the politics surrounding this horrible disease. Read poster TF's explanation, "Why Lyme Doctors Don't Take Insurance":

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=2;t=025539;p=0

Check the online state Lyme groups at:
https://groups.yahoo.com/neo/groups/LouisianaLyme/info

Maybe they can help.

Some more resources (including Support Group info):
www.lyme-aware.org/louisiana.html

http://www.lymenet.org/SupportGroups/UnitedStates/Louisiana/

When calling for an appointment, ask if they have any cancellations or a waiting list. Patients have been able to get in sooner by doing this.

The top LLMD, Dr. H, has written a book entitled, "Why Can't I Get Better?". It is an excellent source of information.

Also read "Cure Unknown" by Pamela Weintraub. Check your local library or buy it used on Amazon.

View "Under Our Skin" for free on www.hulu.com

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sutherngrl
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First test was negative. Only had band 41. Had been sick 2 years. Second test, one year into treatment, was positive.
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