posted
Hello, I have just been to a General Practicioner who ran a blood panel on me and says that I have elevated antibodies for Lupas and wants me to see a Rheumatologist. I have had Lyme since 1997. Has anyone also been diagnosed with Lupas or does anyone know if Lyme causes the same antibodies to become elevated?
Posts: 13 | From New Hill, NC | Registered: Dec 2004
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disturbedme
Frequent Contributor (1K+ posts)
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posted
What tests did he do, do you know?
A lot of people with Lyme have elevated ANA results, which is one of the tests that is used to diagnose Lupus. But everyone who has high levels of ANA, does not always have Lupus. Many, many Lyme patients (who do not have Lupus) have elevated ANA levels.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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disturbedme
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posted
Also, I'd be careful if you do end up going to a Rheumatologist. Many times the only treatment for Lupus is steroids. And I'd bet that this would be what the Rheumatologist would suggest and probably give you a prescription for.... And steroids are a no-no with lyme as they suppress the immune system which makes us sicker.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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posted
Thanks for your responses. He did a Lupas anticoagulant reflex which consists of four subtests.
Here are the tests and the results. Comments welcome. Thanks for the advice regarding steroids and treatment. I definitely do not want steroids.
PTT-LA 58.2 (Range is 0-50)
PTT-LA Mix 50.81 (Range is 0-50)
Hexagonal phasephospholipids 11.7 (Range 0-8)
DRVVT 45.9 (Range 0-44.5)
Basically, I don't really know what that means as far as if I have Lupas or not. And if I do, can I even get treatment with my history of Lyme? Sounds like I wouldn't be able to.
[ 07-21-2009, 07:17 AM: Message edited by: abitconcerned ]
Posts: 13 | From New Hill, NC | Registered: Dec 2004
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posted
I think a lot of "Lupus" is undiagnosed Lyme.
I'm not familiar with any of those tests.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Shosty
Unregistered
posted
I can't find my lupus book, but do know that PTT labs test bleeding time (meaning, I think, the time it takes to clot). If the PTT-LA is too short, it is not important, but if it is too long, as yours is, then they do the PTT-LA Mix test as the next step. Your mix test is not too far out of range, so that is good.
The hexagonal phase phospolipid test is then done (after the PTT's) and is a test for lupus anticoagulant. I just read that this test is a much better, more reliable test than the DRVVT. In your case, the hex. phase phospholipid test is further out of range than the DRVVT.
I would definitely see a rheumatologist.
Sometimes Lyme can cause these things. My daughter's PTT values were out of range for a year or so, and are now back to normal. In her case, I believe, back then, that the antibiotics actually may have triggered early lupus, even though she also was diagnosed with Lyme (but tests were never CDC conclusive). However, now, several years later, it appears that she does actually have lupus.
I have a similar murky story, with extremely high ANA (1:5120)and a skin biopsy that supports a lupus diagnosis, but have also been fully CDC positive for Lyme. Unlike others who have posted here, my lupus labs and symptoms (like sun sickness) not only did not resolve with Lyme treatment, but got much worse.
It is conceivable that one could have both Lyme and lupus, that Lyme triggered the lupus (and the Lyme bacteria could either still be present or eradicated but leaving residual autoimmunity behind), and it is even conceivable that a person with lupus could be more susceptible to getting sick with Lyme. So, it is all very murky.
Due to the potentially life-threatening aspects of lupus, it is good to be followed by a rheumatologist. Lupus can be mild or severe, but it can go from mild to severe and this process should be caught early.
My daughter and I take Plaquenil, which is the first step with lupus treatment. Our LLMD also prescribes it for Lyme, as part of a protocol. So no problem there.
My daughter did steroids for 10 days last year, and they were needed. Her Lyme, if she has Lyme, did not flare w/the steroids. If it did, then we would have added antibiotics, but there was no choice about taking the steroids: she needed them.
I have not had to take them at all for my lupus.
I am assuming your ANA is positive, but wonder if your anti-double stranded DNA is positive. Again, my daughter had that while on an antibiotic, and that lab result is supposed to be definitive for lupus, but she has not had a positive anti-DNA for years. Her ANA continues to be high. She has many other symptoms of lupus,as do I- and these symptoms are not as typical of Lyme.
You should not let fear of steroids keep you from an MD who knows about this stuff. You can always say no, but at least you will be followed.
I don't really know, but it seems as if your labs are positive but not too bad. I am not a doctor and that is just an impression.
One more thing: you can also try Chinese herbal medicine. I just read an article about a new mainstream med approach coming in the future, using hydrangea, which Chinese herbal medicine already uses. It targets the part of the immune system involved in lupus but does not suppress other parts of the immune system, the way most meds do.
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posted
Thanks so much for the information, Shosty!
I do not have my ANA results. I'm going to call my doctor today to ask for them. Even the way I found out about my results is a little "murky."
The dr.'s office called and told me "we want you to see a rheumatologist because your antibodies are elevated for Lupas."
I said oh, alright, can you tell me what they are and what the ranges are. They then told me to hold on. After several minutes they came back and said, "we'll have to call you back."
After an hour, they called back and said, "we think there's been some sort of mistake. The lab results we have here are all within normal range."
That was last Monday. Yesterday, they called back and gave me these resutls saying they had found them again with the return of one of their doctor's from vacation.
I had gone in in June (which was when the bloodwork was done) because of severe joint pain. I assumed this was due to a relapse in the Lyme because I had just given birth to my son in March and I relapsed after the birth of my daughter two years prior. I also had pneumonia at the time that I had acquired towards the end of my pregnancy and couldn't shake.
I put myself on a sugar-free diet, and other than manageable joint pain, I've been feeling alright (no pneumonia).
Posts: 13 | From New Hill, NC | Registered: Dec 2004
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Shosty
Unregistered
posted
I did find one of my books on autoimmunity (not the lupus book) and in the section on antiphospholipids, anticoagulant etc., it says that an infection can trigger all this, and so your labs could be from Lyme (in one paragraph it even mentions Lyme).
For me and my daughter, I finally resolved to proceed as if labels do not matter. You are having some autoimmune illness, and you can approach it maybe be treating both the Lyme and the autoimmunity. Plaquenil is used for both, and suppresses the immune system gently (it also makes Biaxin and zithromax more effective by altering the pH of the cells).
If you need something stronger, like steroids, then you can talk with an LLMD and make sure you are on antibiotics. Your symptoms aren't terrible, and your labs aren't terrible, so it seems possible that you will avoid steroids though.
It would be great, in an ideal world, if the rheum. and Lyme MD could consult, or your primary care could consult and coordinate, but as we all know, the controversial nature of Lyme makes this difficult. Unless you get a name of a rheumatologist from a Lyme site or organization, it is almost guaranteed that the rheum. will not accept Lyme as part of the picture.
We have pursued both tracks, so to speak, for years, trying to avoid harm, and trying to find benefit. It is tricky, but it is possible.
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