This is topic Poll: how many have positive ANA's? in forum Medical Questions at LymeNet Flash.


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Posted by Lyddie on :
 
I keep posting about autoimmunity with Lyme. Dr. Jones tests the ANA in the very first appoinment, when evaluating Lyme. If any of you have had the ANA test, how many are positive/elevated? If not that many people with Lyme do have a positive ANA, maybe those of us who do should in fact consider that we have lupus as well as Lyme. Thanks!
 
Posted by duke77 (Member # 5051) on :
 
My theory is it might have something to do with the stage of the disease or the strain of Lyme. I had a negative ANA, RF, sed rate, CRP, and other inflammatory markers negative. My childhoods friends sister was diagnosised with Lupus later to find out it was Lyme. She had all of the typical Lupus tests positive and blood in her urine lots of inflammation. I
 
Posted by Squeegee (Member # 7219) on :
 
I had a positive ANA (Sed rate, RF were ok)but was negative on the full lupus panel.

I have had Lyme for probably 25+ years and also Ehrlichia (HME).


 

Posted by Lyddie on :
 
I have read and been told it's a matter of genetics.

Three member of my family (me, two daughters) have positive ANA's. We are at totally different stages w/Lyme. The two girls' ANA's have reduced but not resolved.

LLMD's said treatment would resolve ANA's. I've been on abx for 4 years and my ANA has gone up. Could be the Lyme is still being "stirred up" (Dr. D) by the meds.

All three of us have the HLA-DR4 genetic type. One daughter has type 1 diabetes, which is an autoimmune illness.

This genetic subtype apparently shows predisposition to autoimmune problems. With Lyme, this genetic type is presdisposed to "intractable" (Liegner) chronic Lyme.

Again, I am really curious how many on this board have positive ANA's.
 

Posted by bpeck (Member # 3235) on :
 
I can only speak for my case.. and IMO, you tissue type will determine how disease will be presented (i.e. what symptoms you'll manifest) and this included whether you'll have a high ANA.

I had Lyme untreated for 25+ years- mis dx's as at first lupus (high ANA + ) then as I aged, they added other autoimmune disorders to my list settling on complex auto immune disorder... I refused steroid treatment though - which made me a very unpopular patient.

All my autoimmune symtoms went away post Lyme therapy..

I've always had a hard time beleiving autoimmune disorders are the result of an immune system just gone haywire..
IMO
probably all of them are pathogen based..
 

Posted by Foggy (Member # 1584) on :
 
No + ANA, but + Thyroid Auto-AB test. My LLMD thinks bb triggered this as my T#s are normal.
 
Posted by treepatrol (Member # 4117) on :
 
Stages of lyme in the body and or secondary coinfections are causeing Antinuclear Antibody Antibodies to be up or down.

This is what is meant by a positive ANA. Each laboratory has to determine how much the patient's serum must be diluted before it is reacted with the cells - as "neat" serum often gives a positive ANA test. Thus a positive test is defined as the lowest dilution that would be expected to produce green fluorescence in a patient with disease. This is usually referred to as a titer. For instance, a titer greater than a dilution of 1 in 40 might be the dilution separating a normal serum from a diseasesd serum. This is usually seen on the lab report as Positive > 1:40. The higher the titer, the more likely the patient has an immune disease and lyme is definnatley a immune diseaseIt attacks lymphocytes=immune system.

Killing Lymphocytes By Spirochetes

 

Posted by Lyddie on :
 
So tree, do/did you have a positive ANA?

Thanks for the info on lymphocytes. Saying Lyme is an "immune disease" is different from what I am asking about though...I am asking about "autoimmune disease" which is a different thing.

For example, AIDS is an immune disease involving suppressed immune activity. But lupus, an autoimmune illness, involves increased immune activity, but it's turned against one's own body. So they're kind of opposites.

BPeck I agree autoimmunity is probably pathogen-based.

It does seem that a lot of people I know with Lyme do not have positive ANA's, even though the LLMD's say it is common. Informally, I am just curious to see how many answer "yes" to my question about ANA's.
 

Posted by Jellybelly (Member # 7142) on :
 
positive here
 
Posted by daniella (Member # 6753) on :
 
positive too.. and thyroid ab...
 
Posted by Sue vG (Member # 3143) on :
 
Positive ANA, positive thyroid antibodies

Negative impact on my health!
 

Posted by Pocono Lyme (Member # 5939) on :
 
Borderline ANA, repeat ANA negative
 
Posted by Lyddie on :
 
Thanks guys, this is interesting, hope more people respond...Lyddie
 
Posted by Monica (Member # 224) on :
 
My ANA increased into the thousands before antibiotic treatment began. After abx it went back to normal. Negative for all other Lupus-oriented screens.

Recently tested again-- ANA up. On new regimen of abx now.
 

Posted by treepatrol (Member # 4117) on :
 
quote:
Originally posted by Lyddie:
So tree, do/did you have a positive ANA?

Thanks for the info on lymphocytes. Saying Lyme is an "immune disease" is different from what I am asking about though...I am asking about "autoimmune disease" which is a different thing.

For example, AIDS is an immune disease involving suppressed immune activity. But lupus, an autoimmune illness, involves increased immune activity, but it's turned against one's own body. So they're kind of opposites.

BPeck I agree autoimmunity is probably pathogen-based.

It does seem that a lot of people I know with Lyme do not have positive ANA's, even though the LLMD's say it is common. Informally, I am just curious to see how many answer "yes" to my question about ANA's.

Okay lets see if I can explain what I said.

Lyme enters the body and immediatley changes then it gets recognised by immune system attack begins then lyme enters immune system attack slows down or stops from immune system because lyme is wearing our protiens then somewhere in here lyme becomes recognized again bingo arthritis acheing all over again ana's back up at that time. And everytime lyme does this cycle it happens all over again.

I hope I explained and you understand what Iam saying.
At any given time in this cycle ANA'S can skyrocket or plummet.

[This message has been edited by treepatrol (edited 13 May 2005).]
 

Posted by skrwolf (Member # 1575) on :
 
Positive here... First time 1:320, subsequent times, different ranges. I have yet to have a normal ANA (negative) test.

Shelly :-)
 

Posted by bg (Member # 46416) on :
 
positive ANA ...

also told on 3 separate occasions that "you have borderline LUPUS" with nothing done & 1 dr. even walked out the door after saying that giving me NO info on lupus!

bettyg
 

Posted by janet thomas (Member # 7122) on :
 
borderline
 
Posted by earthgirl (Member # 7314) on :
 
Positive ANA here (very high titer).
Also + for anti-cardiolipin antibodies, but - on anti-thyroid and RA.
 
Posted by Nutmeg (Member # 7250) on :
 
My recent ANA was "positive by enzyme immunoassay, but negative on a follow-up immunofluorescence assay using Hep 2 cells" so no titer was reported. The lab suggested waiting and retesting, or using a more specific type of ANA test.

I recall having a positive ANA test maybe 10-12 years ago when I had severe foot/ankle pain and went to a walk-in clinic. I didn't believe the dx (rheumatoid arthritis) so I went to a sports medicine doc and felt much better after NSAIDS and exercises.

Don't have a clear lyme & co-infection dx yet...appointments are made and I'm waiting. My Igenex WB was indeterminate, with INDs in a lot of bands and a few positives. Probably chronic lyme for 25+ years, and fibromyalgia, and very likely to have co- or related CWD infections. I do have a normal ESR (22/0-30), but high fibrinogen (525/190-420) and CRP, highly sensitive (11.6/0.0-1.1), so there is something happeining with hypercoagulation as well. NattoK is helping some.

Nutmeg
 

Posted by lou (Member # 81) on :
 
One positive ANA, several negative.

Positive anti-thyroid antibodies, with "normal" TSH and low normal T3 and T4, but some symptoms that are typical of hypothyroidism.
 

Posted by DR. Wiseass (Member # 6777) on :
 
low positive ANA, positive thyroid antibodies, high CRP, high cholesterol, high triglycerides, white matter on my brain

I have no theories today.

------------------
DR. Wiseass - not a real doc - just a real wise ass.
www.twistoflyme.blogspot.com
 

Posted by Oz (Member # 2905) on :
 
Positive on the positive.
 
Posted by HEATHERKISS (Member # 6789) on :
 
Yep! High positive 3 different times and then it just started to get lower.
 
Posted by Lyddie on :
 
Wow, this is so helpful...anyone else?
 
Posted by burnbitter (Member # 7088) on :
 
Negative ANA for lupus
Also ECR was fine and has been for years, it was pretty elevated for a while about 10 years ago before I started allergy treatment and had surgeries for endometriosis.

Also my cat scan looked fine, though as my friend with MS said "if it shows up on a CAT scan you wouldn't really need the test to know".


 

Posted by ivebeentricked (Member # 6944) on :
 
Hey everyone,

Just had an ANA test last week that came back negative. My docctors said according to my blood work done last week, I am more than healthy, but the day it was done and all of last week and the week before I felt worse than I had in a very long time, I am almost positive I was herxing.

I have only had a positive test through Bowen for lyme and babs, my IgG western Blot was totaly negative, and my IgM was mostly negative for every band, and midrange on just a few. I am now doing the LDA test and I screwed up and used tomorrow;s test tube this morning. Oh well, any one else done one of these tests?
 

Posted by duke77 (Member # 5051) on :
 
Is the LDA test the same as a LUAT urine antigen test? IF so I have done one it was positive, along with a positive PCR, negative on both WB tests only bands 41 and 18 had positive marks.
 
Posted by Pitnum (Member # 4906) on :
 
I have had a positive ANA ever since testing positive with Lyme (prior to lyme diagnosis ANA was negative).

I also have a high sed rate and elevated CRP.
Sed rate and CRP decreased slightly with IV abx, but ANA remained positive.

I had more specific testing for lupus, but those tests were all negative. Doc told me that as long as I have lyme, I will test postive on ANA test.

After a break from abx, all previous tests were elevated again! Hope this helps.
 

Posted by Lyddie on :
 
Hope this poll continues...I plan on taking this with me to the rheumatologist..very helpful, thanks!
 
Posted by riversinger (Member # 4851) on :
 
Negative ANA, Positive TPO thyroid antibodies

------------------
Sonoma County Lyme Support
 

Posted by bg2711 (Member # 1865) on :
 
HI,

I have positive ANA and Positive RA - speckeled, but said it wasn't lupus, it was an unnamed autoimmune problem. Said there are so many, they may never be able to give it a name. I call it Lyme.
Barb
 

Posted by PINKISH.HUE on :
 
quote:
Originally posted by bg2711:
HI,

I have positive ANA and Positive RA - speckeled, but said it wasn't lupus, it was an unnamed autoimmune problem. Said there are so many, they may never be able to give it a name. I call it Lyme.
Barb


Sounds like to me you have RA. RA positive and ANA positive right? Well, ANA is not just for lupus.

ANA- Anti-Nuclear Antibody.

Ana occurs in patients with a variety of autoimmune diseases. Both systemic and oragen-specific. Particarly common in SRD (systemic rheumatic diseases. (Lupus, RA, Dermatomyositis, sclerosis, mixed connective tissue diesase... etc. list goes on.

A large number of healthy individuals will have a positive ANA (weak), which shows doctors a false-positive. Positive ana results GREATER than 3.0 units are associated with a condition. Anything under does not show true disease with a SRD.

ANA may also be found in patients with viral illnesses, chronic infections, or patients on many different antibiotics.

Ana results, as with anyother testing should be evaluated with clinical symptoms and other testing.

To rule out viral illnesses, chronic infections patients should have an ANA re-tested 2-4 weeks later. Also pts with many antibiotics or medications, for true positives, should be off their regimen of drugs before testing is done for accuracy.

I hope that clears up more about what an ANA test is.

 

Posted by Lyddie on :
 
I have never heard or read about antibiotics elevating ANA...can you tell us a little more about this?
 
Posted by Panchito (Member # 4880) on :
 

ANA: negative
CRP: negative
Lupus screening: negative

Tested positive 1:128 for lyme (no co infections) through bowen

 

Posted by ivebinlymed2 (Member # 7330) on :
 
Hi, I am new to the board. My ten year old daughter has tested positive for an elevated ANA three times. She has been tested so far for Leukemia (bone marrow test, OUCH!), Lupus, Juvenile Rheumatoid Arthritis and many other rheumatologic diseases. All tests have come up empty handed. She continues to have an ANA of 1:60 and her one of her liver tests was slightly elevated. The ped rheumy doc was not concerned about her liver test being sightly elevated, saying that what you eat the night before the blood work could cause that to go wacky. Anyway, we see a lyme literate doc a week from today. My sister in law was the one that clued me in that the testing we do for Lyme down south is inaccurate. Now we will see this infectious diseases doc (actually his nurse practitioner). He must be good, people come from thirty states to his practice. We hope this is the help we have been seeking for so many months. In the process I talked with a lyme literate lab's research doctor one day. He says if you have an elevated ANA and a positive double stranded DNA test that you have a better chance of an autoimmune disease, such as Lupus or RA, but if you have an elevated ANA and a negative double stranded DNA test that the chances are better that it is Lyme. Does anyone know if this is true? Also, I read something along the way about the liver (sorry I don't know specific test) tests being elevated in Lyme patients. I was wondering if there was truth in this? Lyddie, I hope this helps you. I know what it is like to need to find the correct thing to say to get a doctor to hear you out. Maybe there will be some power in numbers for you!
 
Posted by Mo (Member # 2863) on :
 
It would be interesting to follow this closely in a patient, say..weekly, long-term through treatment, and see what the fluctuations are and what they may be related to.

(Also..to have daily tests run just to see what normal fluctuation rates are..for a baseline)

Mo
 

Posted by Lyddie on :
 
ivebeenlymed2, my daughter's ANA was up to 1:1280 and she had at least two positive anti-DNA's in the winter and spring of 2002...it was Dr. J, the well-known pediatric Lyme doctor, who did these tests. She also has type 1 diabetes, which is an autoimmune disorder and means she is prone to other autoimmune problems, and she has the HLA-DR 4 genetic type (see the thread on this nearby).

But, she also had specific Lyme bands on her Western Blot, and the pattern of reaction to antibiotics almost certainly would suggest Lyme (for instance, sudden psychosis with no prior or later such history, while first on tetracycline).

After a couple of years of antibiotics, her ANA is now 1:160. She still has some problems but she is much better. (Mo,apparently the ANA does not fluctuate daily or rapidly and it actually does not always correlate w/symptoms: in other words you might have a flare but still have lower ANA and by the time the ANA is way up, you might not have such bad symptoms, or so the MD's told me)

So, with my daughter, the rheumatologist will say she has autoimmune tendencies and experienced a lupus-like illness during puberty, which was triggered or worsened by hormones and is now in remission (sort of, still has Raynaud's, painful swollen glands etc.)

The Lyme doctor will say it was Lyme, which triggers autoimmune stuff in some people (may also have been exacerbated by hormones) and that the antibiotics helped the symptoms and brought the ANA down.

ivebeenlymed2, with my daughter, I don't even care anymore what to call it! Both doctors put her on Plaquenil for two years, and the antibiotics certainly seemed to help, after the first horrible months.

I hope this helps a little. Ironically, I am facing the same question for myself, although I have not improved as much as my daughter has on the meds. I have a positive ANA and skin biopsy and they say I have lupus, but my Western Blot is very, very positive, every time it's done.

Maybe all these things shouldn't be seen as mutually exclusive, but as cooexising or interrelated. It really helps me to see that so many on this board have had positive ANA's, and that quite a few got better after antibiotics! I was starting to think maybe I was on the wrong path.

[This message has been edited by Lyddie (edited 16 May 2005).]
 

Posted by ivebinlymed2 (Member # 7330) on :
 
Lyddie I relate about diagnosis. I have long been saying if God wanted to heal my daughter spontaneously, great! I never need to have a name for it. The same goes for the docs, if they can get to the root of the problem enough to make her well, what do I care if it has a name? She has been in excruciating pain, poor child! We were trying to see the famous Dr. J. because our doc down here couldn't see our daughter, but they found a cancellation after all. Now that would have been a drive from NC! Any of us would go to China on a slow boat for our children's health, though, right?
 
Posted by mom2matt (Member # 7478) on :
 
I tested "slightly" elevated on my ANA. My doc said that half the female population does. Other docs have said this too. So is this to say that 50% of us woman have either Lyme or Lupus??? I am confused. So because mine is slightly elevated and he said it has been all along...does this mean I have had Lyme for longer then I think?

Terri
 
Posted by amandasmom (Member # 50032) on :
 
my 9 year old daughter recently tested positive for Lyme, after trying to discover what was causing her headaches, muscle and joint pains for an entire year. Until now her only abnormal blood test result had been a positive ANA 1:320 speckled, it must be related, right?!?!?
 
Posted by dbpei (Member # 33574) on :
 
Negative ANA, but positive ACE (angiotensin converting enzyme). Have been treating for 6 years and we think I was infected for 5 or more years before treating. Neuro symptoms including severe hearing loss.
 
Posted by Lymetoo (Member # 743) on :
 
quote:
Originally posted by amandasmom:
my 9 year old daughter recently tested positive for Lyme, after trying to discover what was causing her headaches, muscle and joint pains for an entire year. Until now her only abnormal blood test result had been a positive ANA 1:320 speckled, it must be related, right?!?!?
-
Lyme can definitely cause an elevated ANA .. Find an LLMD right away.
 
Posted by gigimac (Member # 33353) on :
 
My ana was always negative over the years with lyme but after ebv reactivated my ana was positive months later, not immediately after ebv infection or even at my sickest with ebv but months later.

Ana positive and the one that represents mixed connective tissue issues was slightly positive.

hope it goes away
 
Posted by hopingandpraying (Member # 9256) on :
 
amandasmom - Welcome to Lymenet! PM sent for CT.

Is your daughter under the care of a Lyme-literate doctor (LLMD)? If not, she needs to be evaluated and treated by one. Non LLMDs have no clue about this horrible disease or its complex treatment!

A LLMD is one who has treated Lyme disease and the co-infections which come with it for many years and has gotten patients well. A good one will follow Dr. B's Guidelines, the "gold standard" for Lyme treatment.

Here is a link for them:

http://www.lymenet.org/BurrGuide200810.pdf

LLMDs are far and few between, unfortunately. She needs to go where they are. I don't know of any on Long Island.

Also, most LLMDs do not accept insurance due to the politics surrounding this horrible disease. Read poster TF's explanation, "Why Lyme Doctors Don't Take Insurance":
http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=2;t=025539;p=0

When calling for an appointment, ask if they have any cancellations or a waiting list. Patients have been able to get in sooner by doing this.

Check the online state Lyme groups at:
https://groups.yahoo.com/neo/groups/NewYorkLyme/info

Maybe they can help.

Some more resources for you (including Support Groups info):
http://whatislyme.com/websites-and-support-groups-by-state/
www.empirestatelymediseaseassociation.org

http://www.lymenet.org/SupportGroups/UnitedStates/NewYork/

Here are some links for you with good information about Lyme and children:

http://www.childrenslymenetwork.org/

https://sites.google.com/site/drjoneskids/symptoms-literature

https://sites.google.com/site/drjoneskids/home

Here is a link for a book titled, "When Your Child Has Lyme Disease: A Parent's Survival Guide" which also might be helpful:

http://www.lymeliteratepress.com/

Read the books written by the top LLMD, Dr. H, titled, "Why Can't I Get Better?" and "How Can I Get Better?". They are an excellent source of information.

Read "Cure Unknown" by Pamela Weintraub. Get it at your local library or buy it used on Amazon.

View "Under Our Skin" for free on http://www.veoh.com/m/watch.php?v=v21055812yWtmpgB8
 


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