I am very confused right now, and I hope that someone can help me out! My doctor ordered some blood work for me because I have had lower back pain since I was rear-ended in an auto accident back in January. Imagine my surprise when the tests revealed not only lyme disease, but the possibility of lupus, too. Ugh! I saw an infectious disease doctor earlier this week, and he "thinks" I have lyme disease (even though I feel great and have no symptoms). He wants to put me on a one-month dose of 100mg. of doxycycline (twice a day). The problem is that I get VERY sick when I take antibiotics because I have ulcerative colitis, a digestive bowel disease. So, I don't want to have to take the antibiotics unless I am sure i do have lyme disease. Here are the results of the blood tests I have in front of me:
B. Burgdorferi AB (IGG) QL WB Negative
B. Burgdorferi 18 kD (IGG) Nonreactive B. Burgdorferi 23 kD (IGG) Nonreactive B. Burgdorferi 28 kD (IGG) Nonreactive B. Burgdorferi 30 kD (IGG) Reactive B. Burgdorferi 39 kD (IGG) Nonreactive B. Burgdorferi 41 kD (IGG) Nonreactive B. Burgdorferi 45 kD (IGG) Nonreactive B. Burgdorferi 58 kD (IGG) Nonreactive B. Burgdorferi 66 kD (IGG) Nonreactive B. Burgdorferi 93 kD (IGG) Nonreactive
Burgdorferi AB (IGM) QL WB Positive
B. Burgdorferi 23 kD (IGM) Reactive B. Burgdorferi 39 kD (IGM) Nonreactive B. Burgdorferi 41 kD (IGM) Reactive
I filled the prescription, but I am afraid to take it until I have more answers. I have also read that people suffering from autoimmune diseases (like lupus) sometimes have falso positive lyme tests. My doctor did not seem interested in pursuing that topic.
Any thoughts or suggestions that anyone has would be greatly appreciated! Thanks!
Posts: 1 | From Leesburg, VA | Registered: Jul 2005
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Kara Tyson
Frequent Contributor (5K+ posts)
Member # 939
posted
Take the meds. If you caught this early (and even found a Dr. willing to treat you), consider yourself lucky. People travel hundreds and sometimes thousands of miles to get antibiotics for this illness.
There is no side effect to antibiotics that are worth taking a risk of progressive Lyme disease.
You could end up with heart damage, arthritis, seizures, blind, deaf, or even in a wheelchair.
Usually a false positive on a Lyme test would be if you are infected with syphilis or you have a severe case of gum disease.
HEATHERKISS
Frequent Contributor (1K+ posts)
Member # 6789
posted
Hello Tiffany,
So sorry about your accident.
It's backward what you read. "I have also read that people suffering from autoimmune diseases (like lupus) sometimes have false positive lyme tests."
I was on my way to Lupus and finally discoved I had Lyme. After being on antibiotics since January of this year....... I have no more Lupus type symptoms/problems.
I really don't know the best way to take Doxy but when I take Biaxin and other things I take it right in the middle of a big meal. I found that in the morning oatmeal or cream of wheat is good for fiber and protecting your stomache.
Just my personal opinions. I'm not a Doctor.
Heather
[This message has been edited by HEATHERKISS (edited 02 July 2005).]
[This message has been edited by HEATHERKISS (edited 02 July 2005).]
Posts: 1974 | From ABERDEEN, NJ 07747 | Registered: Jan 2005
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
It is true that lupus can create false pos, but your bands (thanks for posting them) are VERY specific for Lyme Disease (30 and 23) Which lab did the test?
There are others here with that specific urinary diagnosis, they may be able to help you thru it while taking abx. 30 days of Doxy would be a good start.
Many people who have lyme feel MUCH worse on the ABX like you say you do. In fact it is sometimes seen as a diagnostic tool-feels worse on ABX means you have lyme. Because the ABX are killing the spirochete(bacteria) and when they die they break in to parts and your body has to fight harder and also they have a toxic like effect when they leave your system this way making you feel even worse!
A car accident or any trauma, physical or emotional CAN (but not always does) bring out the symptoms of lyme and start an old infection back up again. The lower back pain may be from the lyme. I had a sports injury that just would NOT heal, until we discovered lyme relapse and with ABX it is much better!
Hope my opinions help. I am not a Doctor, just been around for some time! Trails
janet thomas
Frequent Contributor (1K+ posts)
Member # 7122
posted
Check yourself against the symptom list at www.canlyme.com.
30 days of doxy is a just a start. You need to be evaluated by a Lyme specialist ASAP. Contact the support groups in your area for a Lyme doctor referral. IgG antibody usually takes at least 6 weeks to form so you've had Lyme for a while.
Doxy precautions-doxy is especially hard on the gut so 1-have a good amt of food in your stomach 2-follow with a glass of liquid to flush it thru the esophagus and into the stomach 3-don't lie down for 30-60 minutes after taking 4-be careful of sunburn
If you can't tolerate it, come on back and we can offer alternatives for your dr to consider.
Possibility of lupus-why?- high ANA?- some of us have had that which normalized after Lyme tx.
It's looks like Quest Labs did your test (QL)-sometimes their tests miss reactive bbands.
I agree with all the above, want to emphasize-get treated now and get a Lyme doc!
posted
Tiffany, i am afraid I agree with everything the others are saying. I started out with urinary symptoms that progressed to full blown neurological lyme disease! You are lucky that you caught it so fast! It does not always start in the joints and with swollen glands. The reason you may not tolerate doxycycline is because it is killing the lyme bacteria. I always thought I was allergic to it.. I took it for 5 months and felt terrible at first then felt better. My pain is almost all gone and the urinary stuff (it was bad) cleared up on long term antibiotics. I wish I could go back to 4 years ago when all I had was those symptoms!! find a doctor who knows how to treat this...we don't want you to end up back here with nuero involvement!
Posts: 446 | From California | Registered: Jul 2004
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posted
Tiffany, not to scare you, but i forgot to mention that my symptoms started after a bad car accident as well. I thought since I walked away from the accident that I was ok. I had high ANA that went down with treatment as well. All I can say is that you have an opportunity here that many of us would give anything to have again.
Posts: 446 | From California | Registered: Jul 2004
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
Where's tiffany? Posts: 1950 | From New Mexico | Registered: Sep 2001
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Lyddie
Unregistered
posted
Don't worry about the "lupus." My entire family had high ANA's which have come down with antibiotic treatment.
Doxy didn't bother my stomach at all. Teracycline and minocycline caused nausea and vomiting for the first few weeks, then were pretty effective at making me feel better.
The 23 band is specific for Lyme, the 41 band is not, but often shows up early.
The western blot is an antibody detection test, so it is looking at your immune response to the lyme bug.
The IGG usually follows the IGM a short time later, so if you have more bands in the IGG you are later on in the infection.
The anybodies don't get produced after a while, so the level of IGM and IGG tail off after a couple of years. This makes it very hard to pass these antibody tests in the late stage.
As you have two specific bands in the IGM blot, this is indicative that you have been exposed to the disease in the last 6-8 WEEKS. This is CDC positive and they set the standard very high, so I would assume it is correct.
Band 41 is the most common in both blots, so I would expect that your IGG will soon follow.
In the early disease you might well not have any symptoms.
I would take the doxy myself as the longer it is left, the harder it is to get rid of and it can become very chronic and debilitating.
If not doxy, then Amoxcillin is another good starter. Doxy is better though because it passes through to the brain.
One last thought, early on in the disease, which is where I think you are, a PCR has more chance of showing up. This is DNA evidence tat the bug is inside you. It detects the bug itself. They too can be -ve though because when you get the blood drawn, it might not have any bacteria in the blood on that day.
Remember though, if caught early on it is easier to treat, so don't hang about. You should make your decision soon if you are to treat it successfully. Listen to your doc.
posted
Maybe you should experiment with the doxy a bit before refusing to take it. I'm on doxy now (300 mg daily) and if I take it at exactly the right time (for me this is 20 minutes after a meal) and with the right kind of food, I'm ok. If I take it during the meal or with the wrong food I get really sick. Maybe you could try it for a couple of days?
Posts: 185 | From the Netherlands | Registered: Mar 2005
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Lyddie
Unregistered
posted
Just wanted to day that a positive IgM can be consistent with longer-term infection as well as recent. IgM can indicate "recurring infection" and also can indicate periods of activity of the disease in your body, regardless of how long it's been. I bleive I've had Lyme 24 years and my IgM is positive, my IgG is not (though I do have postiive IgG bands, not enough).
Our LLMD's don't make any assumptions based on IgM test, on whether the Lyme is recent or long-standing. Regular doctors who do no know Lyme will, however, always interpret a positive IgM as "recent infecton."
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