posted
Hi. I had a ton of bloodwork done by an LL neuro-ophthalmologist. 30+ blood tests. Everything came back ok except for the ANA which was 320. My LLMD said I might consider seeing a LL rheumatologist in New Jersey. What could she do that hasn't already been done or is being done? (I have Neuro Lyme)
Posts: 268 | From Maryland | Registered: Dec 2003
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posted
An ANA of 1:320 isn't that high. ANA's are non-specific. Some people have ANA's that are low positive and have nothing wrong with them.
A rheumatologist could do certain other labs to further evaluate your situation. You already have an LLMD and are on abx, so no harm done if you go. Other positive autoimmune labs don't refute a Lyme diagnosis (though the rheumatologist might say so) but can confirm that you have autoimmune activity connected to the Lyme. Your ANA should come down w/ abx treatment over time, if it's caused by Lyme.
Even w/higher ANA's and more positive lab results indicating autoimmune illness, the rheumatologists prescribe Plaquenil as treatment. This is handy since LLMD's also prescribe this drug.
Since the neuro-opthamologist referred you out to rheumatology, I'm assuming you don't have uveitis or any other eye condition that might in fact be treated w/steroids or methotrexate.
Anyway, we like to get as much information as we can about what is going on in our bodies, and the rheumatology tests have been helpful. And, they are covered by insurance! But we are under no obligation to follow their advice about Lyme, then we just take the rheumatology results back to our LLMD.
Sue vG
Frequent Contributor (1K+ posts)
Member # 3143
posted
I had that tested about 6 weeks after first becoming ill and got the same number. The immunologist who ordered the test and the rheumy I saw next were not concerned about it. It did help get me a fibro dx, though.
Had to wait another year for the REAL dx.
I think it just means there's some autoimmune activity going on.
bpeck
Frequent Contributor (1K+ posts)
Member # 3235
posted
At times in my past, during illness, my ANA was that high (that is pretty high) and it led to a MIS diagnosis of autoimmune disease. That label followed me for years and years, and delayed the true diagnosis of Lyme.
Your LLMD is treating you for neuro lyme, but he's sending you to a rheumy? Obviously your LLMD does not think a high ANA is common in lyme.
I'd be leary of a (mis)diagnosis of an auto immune dosorder if you go to a Rheumy - that's their job!
posted
My daughter's ANA was 1 :1280 and the LLMD wasn't that worried. She's now down to 1:320 which is considered very good. Mine was 1:640 and is now down to 1:320, and, again, the doctor told me it isn't that high. Don't get me wrong: it's POSITIVE, but not that elevated. ANA' s jump in increments, from 40 to 80 to 160 to 320 to 640 to 1280 etc.
If you already know you have Lyme, and already have an LLMD, I don't think there's any harm in getting additional information from a rheumatologist, esp. if that rheumatologist knows something about Lyme.
Our LLMD's still do "differential diagnosis" because it is possible to have something in addition to Lyme. If you had a positive DS anti-DNA, for instance, you might want to monitor for lupus as well as Lyme, or lupus triggered by Lyme, esp. organ-threatening lupus. After a couple of years it becomes clear. My daughter had 2 positive anti-DNA's and it is pretty clear now that they have been negative for 2 years, that this result was caused by Lyme. But we monitored her carefully in the meantime just to be sure.
Rheumatologists can check out very specialized tests associated w/autoimmunity such as bleeding times, various antibodies, C3 and C4 complements, sed rate/CRP and many others. They can use changes in these labs to document progress w/Lyme treatment. This also helps the LLMD evaluate progress.
Depending on the type of auotimmune activity going on, there may be other meds that help you, in addition to the antibiotics. For instance, non-steroidal anti-inflammatories. Plaquenil is an immune-supressant and is very helpful. It is also an anti-malarial so may be helfpul w/coinfections, and it helps certain abx work better.
Especially for people with genetic markers for autoimmune tendencies, such as HLA-DR4, autoimmune activity accompanies Lyme and makes it chronic and hard to treat. Knowing more about this activity only helps the LLMD treat you.
posted
My ANA was the first and only abnormal test. Went to a Rheumatologist and they did nothing. It was 640. Now down to 320 after Lyme treatment. It is most likely due to the Lyme but you should go the the Rheumatologist and have the appropriate follow up tests - these are very specific and done by special labs... Ed
Posts: 139 | From Boston, MA, USA | Registered: Oct 2002
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Monica
Frequent Contributor (1K+ posts)
Member # 224
posted
Don't be alarmed by your ANA results. Mine slowly crept upward until it was in the thousands. After abx, it went back to normal.
Whatever duck you're seeing should know this. Do not allow yourself to be placed on the duck shooting gallery by going to see a rheumy. It will never end.
Posts: 1757 | From Somerset County, NJ | Registered: Oct 2000
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Lyddie
Unregistered
posted
Another reason we see some of these other doctors is to spread some awareness of Lyme. If we all see only the same limited number of LLMD's, and noone else, nothing will ever change. My daughter's rheumatologist resisted the idea of Lyme being responsible for her labs and symptoms. Then a year later, said maybe it was afterall "some kind of infection." Recently she has been interested in discussing Lyme. This took 2 years but hopefully will help others down the road.
The rheumatologist you are being referrred to is supposed to be Lyme literate. I think it's dangerous not to investigate the autoimmune effects of the Lyme, and obviously your LLMD does not feel as knowledgable in this area. We have only gained more insight into our Lyme from our rheumatology appts., which are only adjuncts to our Lyme doctor appts. We also got PT referrrals, referrals to acupuncture, massage and pain mgmt. through rheumatology- all covered by insurance.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
If I am reading this right and am catching on.... that LL eye doc has been good at ordering LOTS of tests for folks in the past. Sometime I wonder if he sits up at night trying to find new tests to try. hehehe I think he is a good doc for the eye stuff.. but in MY opinion.. and in MY situation.. enough is enough.
I was also ordered to have lots of blood work, sleep studies, another MRI of the brain, blah blah blah... I was also referred to other doctors too.
If that is what you are into... go for it.
I chose to skip most of the testing and referrals because:
The end results would show nothing more than what I already knew... my insurance would scream and whine about all the bills being generated and I would get stuck paying more... I didn't need to fill my chart with negative results for bunches of tests encouraging or trying to support the opinion that I was fine... and no matter the results of the tests or referrals, the bottom line was always the same. That is....
If you get rid of Lyme and co-infections... the other stuff would improve.
I wouldn't worry about the ANA at that level.
I haven't seen anyone here so far who has had an elevated ANA that didn't improve with proper treatment for the Lyme and co-infections.
And in MY opinion.. traveling down the auto-immune road sucks and is a total waste.
Fix the problems of active infections and your immune system will like you once again.
Monica
Frequent Contributor (1K+ posts)
Member # 224
posted
Have to throw my two cents in.
I had a very bad experience with Dr. G in NJ and I would advise against seeing her.
She was arrogant and had already decided before she walked in the examining room that I had lupus. She feigned interest and pretended to listen, but she had a closed mind.
I have heard from people who agree me, others who think she's a goddess.
She's developed a reputation for treating LD IF she diagnoses it.
Posts: 1757 | From Somerset County, NJ | Registered: Oct 2000
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Lyddie
Unregistered
posted
Luvmycat, One other thing to mention is that you may run into information about the cross-reactivity of Lyme and autoimmune labs (maybe from Dr. G). Even Igenex mentions this in their information sheet on Lyme testing. To put it simply: Lyme can cause false positive lupus tests (like ANA, anti-DNA) - but autoimmune illnesses such as lupus can also cause false positives on some Lyme tests, mainly the Elisa IgM. I've tried for 3 years to pin this down for Western Blot bands, and have found some indication that some of the Western Blot bands are affected, and others aren't. I only remember that the 23 band was not affected...
In fact, one criteria for a lupus diagnosis is a false positive syphilis test (a spirochete, just like the Lyme bacteria).
So, according to some, and oversimplifying a little, either your Lyme caused the positive ANA, OR your positive ANA caused a false positive Lyme test. We struggled with this, because we wanted to honor all possiblities, but in the end it has made no difference because antibiotics have helped our illnesses.
Then again, as our LLMD said, what the heck IS lupus anyway? Some rheumatologists treat lupus with antibiotics anyway, on the theory that it is triggered by infections.
posted
Hello. I myself, have Lupus, Fibro, OA, APS and many other 'Lupus associated' disorders/syndroms(my 10 yr old daughter was just DX'd with Lyme this past Wed.) In my extensive research over the years,(I've had it since my teens apparantly-I'm almost 38 now) I have come across the fact that, yes, Lyme can/will cause false pos. ANA results. But upon Lyme treatment, the levels will drop back down to a normal area. My rheumy is here in NJ and she is fantastic!(after MANY DUDS! lol) But, she is in Passaic County. I would still recommend seeing a rheumy, since having both Lyme and Lupus would not be unheard of, thou, I think its more the fact fof the Lyme causing your ANA levels to rise. And I find it odd that it was mentioned here that someone has never heard of a rheumy being recommended for someone with Lyme, since Lyme can cause severe arthritis in a person and the docs you see for arthritis and like problems ARE rheumies. IMHO, they would be the best best forceratin aspects of Lyme care...along with your other docs. I myself see her, my rheumy, a GP, a cardio, neurologist, eye doc, etc...and they ALL work together and stay in contact w/each other when it comes to my medical care since diseases like Lupus (and Lyme from what I've learned)cover a huge spectrum of possible problems that can be associated. Its wise to have a 'circle of docs' contributing to your care. Be well... *hugs* Cathy
Posts: 9 | From New Jersey | Registered: Jun 2004
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