posted
About 3 years ago, I went to my doctor for fatigue. He didn't test for Lyme, but he tested for mono and some other things. The results for mono came back positive, but he said there wasn't very many antibodies there, and thought I had a mono relapse that was in remission. He basically said just to rest and I'll get over it. I had never been diagnosed with mono before. At some point between now and then, I developed a large rash on my right elbow that lasted a few weeks. It wasn't itchy so I didn't think much of it. I used to work outside, and I thought maybe it was a reaction to some sort of plant or chemical. I've moved since then, so about 4 weeks ago I went to a new doctor. At this point it's not just fatigue, but I have shortness of breath and I find it exhausting to concentrate and I get incredibly sleepy. This is pretty apparent from the decline in my GPA over the past 2 years (I'm in undergrad). The severity varies. There are sometimes whole weeks where I feel like I don't get anything done. It's usually difficult for me to get out of bed in the morning, even after 9 or 10 hours of sleep. Anyway, so this new doctor tested for everything that could be making me tired. He didn't test for mono though, but he did test for Lyme. I'm unsure of what lab the tests were done at, because I saw a lot of stuff about Quest at the office, but the result printouts say LabCorp. My results for the EIA came up as positive at 1.09. The WB said all bands for IgG were absent. For IgM, bands 41, 39, and 23 were tested, but only 41 was present, so it was negative. He decided to test for Lyme again, and also is doing a mono test (for giggles?). He said if more bands showed up for Lyme this time, he would treat for it. Is this a waste of time? The only medication I take is Zyrtec-D - could this throw off the test results?
Posts: 5 | From Reston, VA | Registered: Jul 2010
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posted
You had a Elisa Postive? You're so lucky you had a postive Elisa test! Many people who have lyme don't get a postive so doctors wont treat. It really just depends on your immune system and how much antibodies it is producing since Lyme supprsses the immune system.
I had a postive Elisa. I had bands 23, 41, and 93. I think with you having a postive Elisa and band 41 that is enough to say you have lyme. I am also an under grad here in Idaho. I only had 4 semester left but got suspended due to medical. (They could care less that it was lyme).
Go into the "Seeking a Doctor" on this forum. Then post on there to see if you can find a doctor in your area.
Do you have any other symptoms?
Oh and band 41, its the flaggella of bacteria, it helps LYME DISEASE move around
-------------------- Stephanie, University Student.
Ehrlichia [POSITIVE] IGG/IGM AB [H] 1.49 indexLyme AB interp. EIA [A] POSITIVE IGG P93 AB [PRESENT] IGG P41 AB [PRESENT] IGM P41 AB [PRESENT] IGM P23 AB [PRESENT] Lyme IGM WB interp. [A] [PRESENT] Posts: 145 | From Idaho | Registered: Feb 2010
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
You need to see a LLMD. You can post for one in Seeking a Doctor.
It is unusual to have a positive ELISA, so believe it when it is positive.
There are many reasons why your western blot can be "officially negative" like many of us here...
You need to see an expert to get proper treatment. Other Dr's do not understand lyme and coinfections at all.
It sounds like you may have Babesia also....very commonly carried by infected ticks too...the shortness of breath is a clue.
Even if your Dr would decide to treat you for lyme, he would likely give you a low dose of doxy for a few weeks and declare you cured, even when your symptoms persisted because the bacteria has spread.
If you do not want to be very chronically ill for the rest of your life you need a good LLMD.
Please read symptom list p 9-11 and Babesia etc info on pages 22-27 of this paper by a lyme expert...these guidelines are VERY important...
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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t9im
Frequent Contributor (1K+ posts)
Member # 25489
posted
zaylea:
My 10 yr old daughter has lyme but was misdiagnosed due to no EM rash and a negative Elisa.
Having the Elisa is still only half the battle in the medical community. They still want the WB to be positive. Note unless the WB is done at Igenix for IgM only 2 Borrelia burgdorferi specific antibodies (23 & 39) and IGG excludes 31, 34 and 83.
Band 41 is a flagella band (not specific to the Lyme borrelia spirochete) but still indicates you have a spirochete.
I recommend you read Dr. B's Advanced Topics in Lyme Disease. Some of your symptoms sound like a co infection. Note Babesia & Bart also are difficult to detect by blood work.
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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onbam
Unregistered
posted
Doxy needs to be at 400mg/day to be effective, and needs to continue for 3 months after the disappearance of all symptoms. And yes, your positive blood test means that, without a shadow of a doubt, you have it. The whole two-tier thing is bs.
I know this may sound a little "out there," but there's a government coverup of the realities of Lyme disease, and most docs have no idea Make an appointment with a doctor known to patients to be Lyme literate. Check out the following links to educate both yourself and your doctor until you can get to an LLMD, as well as the links in my signature.
Good luck.
underourskin.com undertheeightball.com lymecryme.com -- check out "treatment failure in their own words"--good to try to use to convince your doctor lymeinfo.net
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posted
POSTED BY ZAYLEA .. breaking this up so it can be read by those who have problems with vision........
+++++++++++++++
About 3 years ago, I went to my doctor for fatigue. He didn't test for Lyme, but he tested for mono and some other things.
The results for mono came back positive, but he said there wasn't very many antibodies there, and thought I had a mono relapse that was in remission.
He basically said just to rest and I'll get over it. I had never been diagnosed with mono before. At some point between now and then, I developed a large rash on my right elbow that lasted a few weeks.
It wasn't itchy so I didn't think much of it. I used to work outside, and I thought maybe it was a reaction to some sort of plant or chemical.
I've moved since then, so about 4 weeks ago I went to a new doctor. At this point it's not just fatigue, but I have shortness of breath and I find it exhausting to concentrate and I get incredibly sleepy.
This is pretty apparent from the decline in my GPA over the past 2 years (I'm in undergrad). The severity varies.
There are sometimes whole weeks where I feel like I don't get anything done. It's usually difficult for me to get out of bed in the morning, even after 9 or 10 hours of sleep.
Anyway, so this new doctor tested for everything that could be making me tired. He didn't test for mono though, but he did test for Lyme.
I'm unsure of what lab the tests were done at, because I saw a lot of stuff about Quest at the office, but the result printouts say LabCorp.
My results for the EIA came up as positive at 1.09. The WB said all bands for IgG were absent. For IgM, bands 41, 39, and 23 were tested, but only 41 was present, so it was negative.
He decided to test for Lyme again, and also is doing a mono test (for giggles?). He said if more bands showed up for Lyme this time, he would treat for it.
Is this a waste of time? The only medication I take is Zyrtec-D - could this throw off the test results?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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posted
Yep... I agree with everyone else... A positive ELISA is rare and MUST be believed!
Go to Seeking a Doctor and begin your journey to better health!!
As you can see, LabCorp does not test for very many bands. If the Western Blot had been from Igenex, you would have a greater chance at really seeing something.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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posted
without a doubt you have lyme. i got lucky and was positive with elisa too.
there is no debate when it comes to elisa.(when positive anyway)
-------------------- 3 months Doxy 8 months of Tetra 7 months of Biaxin/Plaq. 4 months Doxy/Biaxin/Plaq. 5 months Biaxin/Plaq. Back on Doxy/Biax/Plaq On the road to recovery. Trying to make people Lyme Aware....... Posts: 289 | From R.I. | Registered: Jun 2009
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posted
Thank you all for your input. I just got my results from the re-test, but I don't know what the doctor has to say about it yet (they're viewable online as soon as they come in).
He tested for lyme, ebv, and lupus.
The lyme EIA came up positive again at 1.06. Again, the only band present on the western blot was IgM P41.
EBV didn't indicate a current infection.
The lupus one was negative (Antinuclear Antibodies, IFA).
I'm going to wait and see what he has to say about it. I'll probably get the tests run again through igenex, either by him or a lyme doctor.
Fortunately, there is a local lyme doctor, and I may make an appointment with her.
The main thing that bothers me about these test results is that IgM P41 isn't specific to Lyme. While my mouth is in pretty good shape, I've had braces for 5 years and there's simply more places for bacteria to hide, so it's conceivable it's gotten into my bloodstream.
posted
I had a positive EIA (1.4 I think) as well with only IgM pos. My neurologist (non llmd) agreed to run follow up through Igenex. This time IgG was positive but not CDC pos. I've had tests run a few times, and they often come back negative.
-------------------- Lyme, Bart, possible Babs Currently on IV Doxy, Bactrim, Zithromax, Nystatin, Mepron Been on nearly every antibiotic since 10/09
posted
From my own personal experience...I was Lyme Elisa positive in January with a fully negative WB (acute lyme) was sent home and said false positive. No lyme in GA remember.
Stupid me!!!!!I got so sick! 2 months later I was CDC positive on WB IGM. Now disseminated lyme disease thank you.
Apparantly, the chance of a false positive EIA or Elisa is 1-5%. The longer you have had Lyme the more unlikely you will test positive for this.
Dont do what I did. Get yourself treated ASAP. You could wait for more bands on WB to show up, but why would you want to risk it? Treat now.
Posts: 747 | From Utah | Registered: Apr 2010
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
I'm with others. Take the Elisa and run to a LLMD. It took me 2 years to figure it out.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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EBV Ab VCA, IgM <0.2 EBV Ab VCA, IgG >8.0 EBV Nuclear Antigen Ab, IgG >8.0 (the normal range for all is 0.0-0.8)
I'm pretty sure the EBV results were similar when I was tested a couple years ago, causing it to be brushed off as me "getting over mono".
The main reason I'm waiting to see an LLMD is because I don't think I can afford to see one for a couple months anyway.
I have insurance, and if my normal doctor can get me started on the right antibiotic in the meantime that'd be better than nothing (I'm aware of the dosages and ones to use in general).
Posts: 5 | From Reston, VA | Registered: Jul 2010
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posted
Sigh, the doctor's office just called, and claims the Lyme results are negative (despite being the same as before, which he at the time called "borderline positive"), but the EBV results represent chronic infection.
I guess that's my answer about whether he's willing to treat for Lyme. I'm going in for an appt with him this afternoon.
Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
zaylea many of us have EBV. I would put money the Lyme is in hiding.
Many of us have to challenge to get a positive test. I did for 3 mths before testing. Went off antibiotic for at least 10 days and it was pos...
Always get copies of your tests. Many have found they have specific bands and were told neg. because they did not have enough bands to say pos. This is a lie.
Don't let anyone tell you neg. until you at least try that. By the way---some of the worst patients are those with EBV and Lyme. The immune system simply is shut down by the Lyme.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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posted
I have Lyme, although only band 41 showed up on my test, and later 83-93 IND from Igenex. I pulled a nymph deer tick off me and got Lyme symptoms a week later. My GP tried to convince me that it couldn't be Lyme, so it must be a summer virus and I should just take Advil and ignore it and it would go away.
She was wrong--I'm still sick and being treated (by an LLMD) 14 months later, making slow but positive progress. (Well, fast progress compared to some, who waited much longer than me to start treatment and then took years instead of months to start seeing improvement.)
My EBV test came back very high. Lyme inhibits your immune system, so latent viruses often take the opportunity to come out and play. If they cause you any symptoms, those may come and go depending on how well your immune system is dealing with them at the time.
They usually go dormant again when the Lyme and coinfections are successfully treated.
Lyme is a clinical diagnosis, so you need an experienced LLMD to diagnose you by your symptoms and history. You don't need a positive test at all to be diagnosed with and treated for Lyme.
The Lyme tests often come back negative in people who really do have Lyme, and uninformed mainstream doctors use those results to deny them diagnosis and treatment, and then they get a lot sicker down the road.
Existing tests miss many people with Lyme. False negatives are common. False positives are very rare. In addition, you are having Lyme-like symptoms, so that plus a positive Elisa test equals Lyme.
Unfortunately, the political situation surrounding Lyme disease results in many uninformed doctors telling patients that their positive Lyme test must be a false positive, even in the face of Lyme symptoms and possibly a known tick bite and/or an EM rash.
This is because a group of doctors associated with the Infectious Disease Society of America (IDSA) deny the existence of chronic Lyme disease. If you stand there in front of one of them with chronic Lyme disease, they will say you have something else or it's all in your head, because they can't admit the existence of the illness.
If the rash you had on your elbow was an EM (Lyme) rash, that alone is enough to diagnose you with Lyme.
Lyme can cause a huge variety of symptoms, and can cause or imitate lupus and many other conditions that people are misdiagnosed with when they really have Lyme.
Many people are misdiagnosed for years and years with fibromyalgia, chronic fatigue syndrome, rheumatoid arthritis, MS, ALS, Parkinson's, Alzheimer's, and other conditions, and then told there is nothing to be done about it, when really they had Lyme all along, which is treatable.
Or worse, they are given steroids for an "autoimmune" condition, which lowers their immune system and makes their Lyme much worse and much harder to cure. Do not take steroids if there is any chance you have Lyme, until you consult an LLMD.
Watch the video "Under Our Skin" www.underourskin.com or read the book "Cure Unknown" by Pamela Weintraub to understand how Lyme disease works and how this unfortunate political situation came about.
In the meantime, run, don't walk, to the nearest LLMD. It is expensive, and unfairly so, but the cost of not getting treated is much greater. The disease can get so much worse if untreated, and the longer treatment is delayed, the more time and money it will take to get better. Early, proper treatment (from an LLMD) is a good investment.
You cannot have "borderline" Lyme. Either the bacteria is present or it isn't. If you have Lyme symptoms and a test indicating you have antibodies to the Lyme bacteria (=positive Elisa), then an experienced LLMD will be very likely to conclude that you have Lyme.
-------------------- Don't forget to laugh! And when you're going through hell, keep going!
Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009. Posts: 756 | From Inside the tunnel | Registered: Jan 2010
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Zaylea~ You could possibly have a chronic EBV infection. Here is an article to read:
posted
I just got back from the doctor. Without me saying anything, he suggested the EBV could be from Lyme, or it could just be chronic EBV. I got the feeling he wasn't ignorant about Lyme and had done his homework.
He was even open to doing the igenex testing, or starting to treat for Lyme now. Either way he thought I should see an infection disease specialist and gave me a referral.
I declined starting treatment because he seemed unsure if I was at a stage where I should be taking IV antibiotics or pills.
Also, if the specialist is going to run more tests, I don't want antibiotics to mess anything up (especially the wrong dosage!)
Posts: 5 | From Reston, VA | Registered: Jul 2010
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posted
Sorry to revive this thread from 2010, but my wife has the same results.
Lyme EIA positive. Lyme WB IGM band 41 pos thru Igenex (no other bands pos). IGG band 41 also pos. EBV AB VCA IGG pos EBV Nuclear Antigen AB IGG pos
She has been receiving antibiotics treatment for presumed Lyme for a few months, but we always wonder if it's some sort of reactivated EBV instead (she doesn't even recall having mono when younger).
Thanks!
Posts: 6 | From DC | Registered: Oct 2015
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