My neuro just called and said my blood work came back positive for Lupus. Does the make having Lyme no possible or is it possible that Lupus shower up b/c I might have Lyme? I just put a call in to my LLMD. Awaiting a call back from her...
It is possible you could have both or you could just have Lupus. Lupus is tricky to diagnose and could cause a host of symptoms similar to lyme disease. If your test was just a positive ANA then there is more specific testing to diagnose Lupus which I am sure the doctor will order. The ANA is a non-specific test but a positive means more testing is needed. Testing of this kind is usually normal with lyme.
Well, my ANA came back with cytoplasmic speckling of unkown significance. The report says- this finding generally in-consistent with a diagnosis of lupus. Neuro #1 mis-read it I guess. My primary and another neuro say that are not concerned about lupus at this time as my other blood work, or "other lupus "markers" (not sure what they are) are all normal.Two docs have said this could be my psoriasis coming through there. No one has ordered further testing yet, I think due in part to everyone saying my symptoms are so "Lyme" like. Symptom wise I do seem to match up more with Lyme than Lupus.
I agree with the above that both are tricky to diagnose.
Also, while lupus is autoimmune and thus treated through steroids, that contradicts Lyme treatment. Steroids are very bad for Lyme or other infections because they slow down the immune system. So if I were you, I'd want the diagnosis to be as clear as possible, which from your posts is the attitude that you are taking.
If I recall, you started antibiotics and will be re-tested for Lyme soon. Some people believe that such an "antibiotic challenge" can make the Lyme test results more clear, so hopefully that will shed some light on your situation.
There is certainly a lot of symptom overlap between the two, but again the treatment is very different.
I'm being re-tested for Lyme on Feb. 5th.... LLMD in response to ANA said she did not think we needed to worry about it at this time, we could look into it later "if we need to". She said depending on how things go w/ test 2 results/herxing she'd look into other "things" if need be. I'll make sure lupus is one of those if it comes down to that.
I should also probably note to you all that I also tested way positive for the ehrlichia co-infection...... Also have wondered about Bartonella though I've tested neg for it b/c my hubby once mentioned what is this streak mark on your back but I did not give it much thought b/c that was back when we thought my issues were orthopedic in nature. I only learned this week from an article about the streak marks that go along with the bartonella co-infection.... not sure if that streak mark was significant or not... Someday I might get to the bottom of all this! what a process!
Sounds like you are getting some very good advice.
If and when they retest the ANA, be sure and spend time in the sun prior to the test. If you do have lupus, it will cause the ANA to be more definite. Honestly, I've never heard of cytoplasmic speckling.
I tested positive for Rocky Mountain Fever (which is a tick born illness). Was treated w/ a month of antibiotic, then we started on the plaquinel for the lupus. I now can see the significance of the timing in treating one and then treating the other.
Thanks for the sun tip.... I'll try my best but it is like 20 degrees in PA right now LOL. I'd have to schedule the test on a warmer day. Does standing in the window where the sun's coming in count?
Yeah leave it to me to have something funky come up. I hear that happens with lyme too though. It can cause some weird stuff to come up in your blood, or everything comes back ok and docs think you are a hypo.
The neuro thought the cytoplasmic speckling could be my psoriasis (I'll ask my derm about it monday). I've had the annoying disease since 8th grade.
Just curious- so if lupus can cause a pos lyme test, can lyme then cause a pos lupus test, you know, like vice versa?
just wondering how the docs figure out what's what if the diseases have such similar symptoms and neither test is perfect.... if only I were a scientist, I'd like to be the one to perfect all of these tests!
I do feel I'm in good hands with my llmd. I was lucky to find her on the first shot too. And as far as llmd's go, she's cheaper than most. I realized thanks to talking to you all today that Igenex will not take blood on fridays b/c of the travel time to CA so I'll likely have my test done on monday Feb. 8th instead. I'll keep ya's posted... I go back to the LLMD on Feb. 19th for follow up.
On another note, I could swear I'm herxing though- old symtpoms are back with a vengeance and some new are here. I've had every symptom on the lyme list today it seems...one thing after another today. one thing leaves and another pops up all day today.
Thanks to you all. You have all been so helpful. It's not easy to know something is wrong with your body, but not know what it is exactly.
Plaquenil is actually used to treat both lupus & Lyme. I've been on it for Lyme. To my knowledge, it's the stuff like corticosteroids such as prednisone are sometimes rx'ed for lupus but are very bad for Lyme. I was put on pred while undiagnosed and while I initially had a positive reaction, it caused my illness to get much worse in the long run.
Sorry it has taken to long to respond, we lost our phone service for a few days.
From my research, the lyme test can be a false positive, but not the other way around. But, it wouldn't hurt for them to go ahead and treat for lyme if thee is a level of doubt that is what is going on. Medicine is partly guessing and treating to see if the treatment works. That's why they call it a "practice". (Just kidding!)
The above statement about false positives in Lyme serology is contrary to my understanding.
The 2-tier testing relies on first a sensitive ELISA screen, followed by a specific Western blot. The overall reliability of the testing remains controversial and inadequate, with false NEGATIVES being the issue.
Even the work of Allen Steere, whose professional view is strongly contrary to the existence of chronic Lyme, reports that the current testing fails to determine Lyme in known cases.
In patients with a bull's eye rash, which by itself is enough to diagnose Lyme, about 2/3 of patients still tested NEGATIVE for Lyme during the acute onset of disease. Over time, that number improved, but even in later cases about 1/3 still tested negative.
I was diagnosed with Lyme and the co-infection Bartonella three years ago. I am now showing signs of Lupus as well. Lyme and Lupus are very similar in their symptoms so it's hard to distinguish which is which. Make sure you go to a Lyme Literate doctor as Lyme can be very tricky and the standard test looking for antibodies is very ineffective in diagnosing lyme. There is a Lyme Culture now that you can order. It takes a few months as Lyme grows very slowly in the petri dish but it is a better indicator of infection than the standard CDC approved test. Best wishes.
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