Overwhelmed And Depressed By Latest Blood Work

[nasalady]

I don't know if there are any experts out there on blood work relating to lupus, but if so, please help! I saw my rheumatologist recently and got the following results; is this serious or not?

CREATINE KINASE, TOTAL: 71 (Reference Range = 29-143 U/L)

ANACHOICE SCREEN : POSITIVE (Reference Range = NEGATIVE)

ANA TITER AND PATTERN

ANA PATTERN: NEGATIVE

ANA: <1:40 (Reference Range: <1:40 negative, 1:40-1:80 low, >1:80 high)

A POSITIVE ANACHOICE AND NEGATIVE ANA IFA MAY STILL SUGGEST THE PRESENCE

OF AUTOIMMUNE ANTIBODIES. SINCE DIFFERENT TEST METHODOLOGIES POSSESS

DIFFERENT SENSITIVITIES, TESTING FOR SPECIFIC ENA AND DS-DNA ANTIBODIES

SHOULD BE CONSIDERED IF CLINICALLY INDICATED.

DNA (DS) ANTIBODY: 30 (Reference Range: <4 negative, 5-9 indeterminate, >10 high)

COMPLEMENT COMPONENT C3C: 210 (Reference Range: 90-180 mg/dL)

COMPLEMENT COMPONENT C4C: 42 (Reference Range: 16-47 mg/dL)

Please in mind that I've been on high doses of Imuran and prednisone for more than a year now; these are powerful immunosuppressant drugs....how can I be producing double-stranded DNA antibodies at such a high level while on PREDNISONE??

I asked the doctor if this means that I have lupus, and he said no. But I've looked at the criteria and I know that I match more than 4 out of the 11.

Two of my aunts died of complications of lupus and one of my daughters has lupus as well...the family curse.

I'm really bummed today.

[Gemini]

I don't know if there are any experts out there on blood work relating to lupus, but if so, please help! I saw my rheumatologist recently and got the following results; is this serious or not?

CREATINE KINASE, TOTAL: 71 (Reference Range = 29-143 U/L)

ANACHOICE SCREEN : POSITIVE (Reference Range = NEGATIVE)

ANA TITER AND PATTERN

ANA PATTERN: NEGATIVE

ANA: <1:40 (Reference Range: <1:40 negative, 1:40-1:80 low, >1:80 high)

A POSITIVE ANACHOICE AND NEGATIVE ANA IFA MAY STILL SUGGEST THE PRESENCE

OF AUTOIMMUNE ANTIBODIES. SINCE DIFFERENT TEST METHODOLOGIES POSSESS

DIFFERENT SENSITIVITIES, TESTING FOR SPECIFIC ENA AND DS-DNA ANTIBODIES

SHOULD BE CONSIDERED IF CLINICALLY INDICATED.

DNA (DS) ANTIBODY: 30 (Reference Range: <4 negative, 5-9 indeterminate, >10 high)

COMPLEMENT COMPONENT C3C: 210 (Reference Range: 90-180 mg/dL)

COMPLEMENT COMPONENT C4C: 42 (Reference Range: 16-47 mg/dL)

Please in mind that I've been on high doses of Imuran and prednisone for more than a year now; these are powerful immunosuppressant drugs....how can I be producing double-stranded DNA antibodies at such a high level while on PREDNISONE??

I asked the doctor if this means that I have lupus, and he said no. But I've looked at the criteria and I know that I match more than 4 out of the 11.

Two of my aunts died of complications of lupus and one of my daughters has lupus as well...the family curse.

I'm really bummed today.

I don't know much about lupus testing because I have so far refused to see a rheumatologist regarding my high ANA general blood work. Call me a wimp but I have 4 autoimmune problems

and no symptoms of lupus so I don't want to hear any more bad news. My niece has lupus and I strongly believe, Celiac. She will not consider or pursue a celiac diagnosis and her lupus symptoms are out of control. I just wanted to say I know how it feels to get scary blood work and have to face the fact there may be more problems. I can really empathize with your feelings and hope you will be OK. Hang in there and I'm sure some of the lupus experts on the forum can help you!

[nasalady]

I don't know much about lupus testing because I have so far refused to see a rheumatologist regarding my high ANA general blood work. Call me a wimp but I have 4 autoimmune problems

and no symptoms of lupus so I don't want to hear any more bad news. My niece has lupus and I strongly believe, Celiac. She will not consider or pursue a celiac diagnosis and her lupus symptoms are out of control. I just wanted to say I know how it feels to get scary blood work and have to face the fact there may be more problems. I can really empathize with your feelings and hope you will be OK. Hang in there and I'm sure some of the lupus experts on the forum can help you!

Thanks Gemini! I hope you DON'T have lupus; glad to hear you have no symptoms!

I don't know.....maybe there's no point in pursuing this since I'm already on immunosuppressants? I don't really know what the treatment is for lupus; is it basically the same as for other autoimmune disease?

[twe0708]

I don't know if there are any experts out there on blood work relating to lupus, but if so, please help! I saw my rheumatologist recently and got the following results; is this serious or not?

CREATINE KINASE, TOTAL: 71 (Reference Range = 29-143 U/L)

ANACHOICE SCREEN : POSITIVE (Reference Range = NEGATIVE)

ANA TITER AND PATTERN

ANA PATTERN: NEGATIVE

ANA: <1:40 (Reference Range: <1:40 negative, 1:40-1:80 low, >1:80 high)

A POSITIVE ANACHOICE AND NEGATIVE ANA IFA MAY STILL SUGGEST THE PRESENCE

OF AUTOIMMUNE ANTIBODIES. SINCE DIFFERENT TEST METHODOLOGIES POSSESS

DIFFERENT SENSITIVITIES, TESTING FOR SPECIFIC ENA AND DS-DNA ANTIBODIES

SHOULD BE CONSIDERED IF CLINICALLY INDICATED.

DNA (DS) ANTIBODY: 30 (Reference Range: <4 negative, 5-9 indeterminate, >10 high)

COMPLEMENT COMPONENT C3C: 210 (Reference Range: 90-180 mg/dL)

COMPLEMENT COMPONENT C4C: 42 (Reference Range: 16-47 mg/dL)

Please in mind that I've been on high doses of Imuran and prednisone for more than a year now; these are powerful immunosuppressant drugs....how can I be producing double-stranded DNA antibodies at such a high level while on PREDNISONE??

I asked the doctor if this means that I have lupus, and he said no. But I've looked at the criteria and I know that I match more than 4 out of the 11.

Two of my aunts died of complications of lupus and one of my daughters has lupus as well...the family curse.

I'm really bummed today.

Do you mind if I ask what made the doc run these specific tests? I was just diagnosed with Celiac Disease and they didn't run these specific tests on me. He did ask me if I have any joint pain and I said no because all of the symptoms I have had for so long I don't really think about them any more because I am use to them. I guess I should have said yes because I do have discomfort in my hip area when getting up out of a chair. The discomfort is right where your body folds when sitting at the top of my legs. And although it isn't all the time but there are occasions when I feel it and I thought it was because I was sitting too much but I'm really not. This is just due to Celiac Disease, right? What symptoms do you have with Lupus?

[nasalady]

Do you mind if I ask what made the doc run these specific tests? I was just diagnosed with Celiac Disease and they didn't run these specific tests on me. He did ask me if I have any joint pain and I said no because all of the symptoms I have had for so long I don't really think about them any more because I am use to them. I guess I should have said yes because I do have discomfort in my hip area when getting up out of a chair. The discomfort is right where your body folds when sitting at the top of my legs. And although it isn't all the time but there are occasions when I feel it and I thought it was because I was sitting too much but I'm really not. This is just due to Celiac Disease, right? What symptoms do you have with Lupus?

Hi there...welcome to the board!

I'm sorry to hear about your diagnosis and symptoms....celiac disease can actually mimic other diseases, so it can be difficult to ascertain if you have celiac alone, or celiac and something else too. If you want to be tested for lupus or any other "rheumatic" or connective tissue disorder, you'll probably have to see a rheumatologist. I assume that you were diagnosed with celiac by either a general practitioner or a gastroenterologist?

Short answer: I'm not sure what prompted my rheumatologist to run those tests....I didn't ask for them. Probably because I'm a new patient for him and he knows that I've been diagnosed with rheumatoid arthritis and fibromyalgia already, along with tons of other autoimmune diseases. So he wanted to see if I might have lupus.

LOOOOONG answer:

Just to give a little background:

The big problem with celiac disease, at least as I currently understand it, is not that it just damages your intestines, but that a cytokine called zonulin is released which causes your intestines to leak things into your bloodstream that don't belong there (viruses, bacteria, other stuff). This apparently sets the stage for your immune system to be overstimulated (reacting to all of the foreign bodies) and become "confused" and start attacking your own internal organs and tissues. If you're interested, they explain it much better at this link:

Open Original Shared Link

So, bottom line is: celiac disease leads to other autoimmune disorders. Some of the common ones that seem to be closely associated with celiac disease are rheumatoid arthritis, Hashimoto's thyroiditis and Graves Disease, lupus, autoimmune hepatitis, Sjogren's Syndrome, psoriasis, etc. (long list). I have most of these AI diseases already.

Anyway, I think my doctor was just trying to be thorough and check everything. He's my third rheumatologist in a year....which is the main benefit of PPO Health Insurance (I can fire any of my doctors and find a replacement!). I'm seeing him because he's a well-known specialist in the field of fibromyalgia research.

Classic symptoms of lupus include (from Open Original Shared Link

* Face rash, which doctors call a malar rash, that is butterfly shaped and covers the bridge of the nose and spreads across the cheeks

* Scaly rash, called a discoid rash, which appears as raised, scaly patches

* Sun-related rash, which appears after exposure to sunlight

* Mouth sores, which are usually painless

* Joint pain and swelling that occurs in two or more joints

* Swelling of the linings around the lungs or the heart (causes chest pain, especially during deep breathing)

* Kidney disease

* A neurological disorder, such as seizures or psychosis

* Low blood counts, such as low red blood count, low platelet count (thrombocytopenia), or a low white cell count (leukopenia)

* Positive anti-nuclear antibody tests (ANA), which indicate that you may have an autoimmune disease

* Other positive blood tests that may indicate an autoimmune disease, such as a positive double-stranded anti-DNA test, positive anti-Sm test, positive anti-phospholipid antibody test or false-positive syphilis test.

I've had the malar rash, the photosensitivity rash, joint pain (but I have RA), unexplained sporadic chest pain, anemia (but I have celiac disease) , positive ANA, DS DNA, and anti-SMA tests (but I have autoimmune hepatitis). My problem is I've got SO MANY diagnoses....I frequently don't know which symptom to blame on which disease! Or sometimes it could be a side effect of the twenty or thirty medications I'm taking!

It's all just so discouraging sometimes! I try to stay upbeat but some days it's harder than others....

I hope you find your answers and feel better soon!

JoAnn

[Gemini]

* Low blood counts, such as low red blood count, low platelet count (thrombocytopenia), or a low white cell count (leukopenia)

* Positive anti-nuclear antibody tests (ANA), which indicate that you may have an autoimmune disease

I've had the malar rash, the photosensitivity rash, joint pain (but I have RA), unexplained sporadic chest pain, anemia (but I have celiac disease) , positive ANA, DS DNA, and anti-SMA tests (but I have autoimmune hepatitis). My problem is I've got SO MANY diagnoses....I frequently don't know which symptom to blame on which disease! Or sometimes it could be a side effect of the twenty or thirty medications I'm taking!

JoAnn

Oh Crap, JoAnn!!!!!!!

I recently had blood work done to re-test my thyroid and found out that it had swung low again. I had cut my dose in half in April, per doctor's orders, as I had gone hyper on my old dosage. It was attributed to my healed intestines and better absorption abilities. In the course of this, they had also run a CBC and found out I was slightly anemic again, after having had a robust RBC in April. Not badly anemic but slightly under the normal range. Hypo thyroid can cause anemia so we guessed it could be from that. Now I read here that low RBC's can be attributed to lupus. I sooooooo can understand your fear and frustration. This totally blows!

To all those recently diagnosed and shell-shocked, this is THE reason to be thankful for a diagnosis of Celiac earlier than I had and an even better reason to stay gluten-free for good. It can really screw you up otherwise! I feel like doing a Lucy Ricardo "WAAAAAAAAAAAA"!

[nasalady]

Oh Crap, JoAnn!!!!!!!

I recently had blood work done to re-test my thyroid and found out that it had swung low again. I had cut my dose in half in April, per doctor's orders, as I had gone hyper on my old dosage. It was attributed to my healed intestines and better absorption abilities. In the course of this, they had also run a CBC and found out I was slightly anemic again, after having had a robust RBC in April. Not badly anemic but slightly under the normal range. Hypo thyroid can cause anemia so we guessed it could be from that. Now I read here that low RBC's can be attributed to lupus. I sooooooo can understand your fear and frustration. This totally blows!

To all those recently diagnosed and shell-shocked, this is THE reason to be thankful for a diagnosis of Celiac earlier than I had and an even better reason to stay gluten-free for good. It can really screw you up otherwise! I feel like doing a Lucy Ricardo "WAAAAAAAAAAAA"!

I'm so sorry.....I didn't mean to scare and depress you too!

We do need a "crying" emoticon.

It is true that anemia can be caused by hypothyroidism and celiac disease too, which we both have! So you don't necessarily have lupus!

(((hugs)))

JoAnn

P.S. I'm totally with you on the "I wish I had known all of this about 30 years earlier" thing!! :LucyRicardo:

[Gemini]

I'm so sorry.....I didn't mean to scare and depress you too!

We do need a "crying" emoticon.

It is true that anemia can be caused by hypothyroidism and celiac disease too, which we both have! So you don't necessarily have lupus!

(((hugs)))

JoAnn

P.S. I'm totally with you on the "I wish I had known all of this about 30 years earlier" thing!! :LucyRicardo:

No, no, no.....you did not scare and depress me, reality did! This whole overlap syndrome, which so often makes a diagnosis hard, is the real pain in the butt.

You just don't know what you really have or wonder what symptoms are due to which disease! My brain hurts from trying to figure it all out.

[nasalady]

Ah yes......reality. As in reality bites.

Here is a picture of a malar rash.....the so-called "butterfly" rash:

http://spider.ipac.caltech.edu/staff/joann.../malar_rash.webp

Unfortunately, it's ME....taken last night.

[Gemini]

Ah yes......reality. As in reality bites.

Here is a picture of a malar rash.....the so-called "butterfly" rash:

http://spider.ipac.caltech.edu/staff/joann.../malar_rash.webp

Unfortunately, it's ME....taken last night.

The only 2 symptoms I have that fit from your listing above is the high ANA (really high!) and the newly discovered slight anemia. I am not a rash person and have no signs of anything like that. My niece's husband's mom has lupus and has always had the malar rash, so I know all too well what that looks like.

I'm sure it's an added kick to have your autoimmune problem staring you in the face everyday!

If you don't mind my asking, JoAnn, did your rheumatologist suggest what your blood results might mean? Or did they do that thing I hate......stare at your blood results with a look of horror along with "How can this be"? I have actually had some doc's tell me that they have absolutely no clue why my results are the way they are! How's that for comfort?

[nasalady]

The only 2 symptoms I have that fit from your listing above is the high ANA (really high!) and the newly discovered slight anemia. I am not a rash person and have no signs of anything like that. My niece's husband's mom has lupus and has always had the malar rash, so I know all too well what that looks like.

I'm sure it's an added kick to have your autoimmune problem staring you in the face everyday!

If you don't mind my asking, JoAnn, did your rheumatologist suggest what your blood results might mean? Or did they do that thing I hate......stare at your blood results with a look of horror along with "How can this be"? I have actually had some doc's tell me that they have absolutely no clue why my results are the way they are! How's that for comfort?

Wow.....if one of my docs ever said anything like that I think it would scare the c*&p out of me!

Anyway, as I mentioned earlier, my rheumy said that the high level of anti-DS DNA did not mean I had lupus. Then he said something about the complement levels being a good sign......??

COMPLEMENT COMPONENT C3C: 210 (Reference Range: 90-180 mg/dL)

COMPLEMENT COMPONENT C4C: 42 (Reference Range: 16-47 mg/dL)

He did not explain why I would have such high levels of anti-DS DNA antibodies without having lupus though. Those antibodies are very specific for SLE.

I would like to understand why that is....which is why I was hoping for a lupus expert to jump in and contribute to this thread. The only things I could find on this is the following:

from Open Original Shared Link

"Tests for detecting anti-ds DNA antibodies and complement. High levels of anti-ds DNA and low levels of complement C3 suggest kidney damage. (It should be noted, however, that some patients with severe kidney damage show low levels of anti-ds DNA.) Testing for anti-C1q antibodies now appears to be an even more reliable indicator of lupus nephritis."

But there's something else about C4 at this URL:

Open Original Shared Link

My C4 is in the reference range, not high or low...but I don't know what it all means. I just don't know enough about these blood tests.

The other question I have is about the 11 criteria....as I understand it, and PLEASE somebody correct me if I'm wrong, if you have the symptom now or you have had it in the past, then you have a match.

Is that correct?

Anyway, I really need to email my doctor and explain to him that I have the malar rash, the photosensitivity rash, etc. It may change his mind. I've just recently realized that I was experiencing these things.....I know that sounds funny, but I have always had problems with my skin flushing bright red at inappropriate times (I have the very fair Irish skin that blushes easily), so I wasn't paying attention to my symptoms until just the past few days.

I do wonder if he decided that there was no point in giving me one more horrible diagnosis....especially because I'm already on Prednisone and Imuran, which are a couple of the meds used to treat lupus?

[Gemini]

Wow.....if one of my docs ever said anything like that I think it would scare the c*&p out of me!

Anyway, as I mentioned earlier, my rheumy said that the high level of anti-DS DNA did not mean I had lupus. Then he said something about the complement levels being a good sign......??

COMPLEMENT COMPONENT C3C: 210 (Reference Range: 90-180 mg/dL)

COMPLEMENT COMPONENT C4C: 42 (Reference Range: 16-47 mg/dL)

He did not explain why I would have such high levels of anti-DS DNA antibodies without having lupus though. Those antibodies are very specific for SLE.

I would like to understand why that is....which is why I was hoping for a lupus expert to jump in and contribute to this thread. The only things I could find on this is the following:

from Open Original Shared Link

"Tests for detecting anti-ds DNA antibodies and complement. High levels of anti-ds DNA and low levels of complement C3 suggest kidney damage. (It should be noted, however, that some patients with severe kidney damage show low levels of anti-ds DNA.) Testing for anti-C1q antibodies now appears to be an even more reliable indicator of lupus nephritis."

But there's something else about C4 at this URL:

Open Original Shared Link

My C4 is in the reference range, not high or low...but I don't know what it all means. I just don't know enough about these blood tests.

The other question I have is about the 11 criteria....as I understand it, and PLEASE somebody correct me if I'm wrong, if you have the symptom now or you have had it in the past, then you have a match.

Is that correct?

Anyway, I really need to email my doctor and explain to him that I have the malar rash, the photosensitivity rash, etc. It may change his mind. I've just recently realized that I was experiencing these things.....I know that sounds funny, but I have always had problems with my skin flushing bright red at inappropriate times (I have the very fair Irish skin that blushes easily), so I wasn't paying attention to my symptoms until just the past few days.

I do wonder if he decided that there was no point in giving me one more horrible diagnosis....especially because I'm already on Prednisone and Imuran, which are a couple of the meds used to treat lupus?

Thanks for all of this information, JoAnn! I will take a more detailed look this week-end. I am sort of in the same boat as you.....some weird test results in the past and doctors who don't seem to know what it all means or maybe are just feeling like, "How much bad news can this lady take?"

It's very frustrating, though, to say the least. It's also hard to ask other people who have lupus because not everyone wants too deep a knowledge about what they have. It's a small percentage of people who want to dig that deep and learn about the blood work.

I do know that I have heard a lot of complaints about rheumatologists and their lack of answers after tests are run. I had more luck with the hematologist I saw a couple of years ago....she was fantastic

and really up to date on blood work results.

I hope someone on this forum can pipe in with some information on this!

Have a good week-end!

[nasalady]

It's very frustrating, though, to say the least. It's also hard to ask other people who have lupus because not everyone wants too deep a knowledge about what they have. It's a small percentage of people who want to dig that deep and learn about the blood work.

Yes....I went to one of my autoimmune Yahoo groups and posted a plea for help with the blood work results yesterday. I know there are a number of people with lupus but not one person has responded. They probably just don't know.

I hope someone on this forum can pipe in with some information on this!

I know that there are a lot of very smart, very informed people here that probably do know something....I hope so too!

Have a good week-end!

Thanks...you too! I will try not to think too much about autoimmune diseases this weekend!

[nasalady]

UPDATE: I have now been to see my rheumatologist; on the basis of my malar rash (I emailed him a picture), my symptoms, and the elevated anti-DS DNA antibodies I am now on Plaquinel (one of the standard lupus meds).

He believes that I either have lupus or a related "overlap syndrome".

Also, here is the answer I got from the moderator at WeHaveLupus.com (Saysusie)....I reproduce it here because it's got a lot of very useful information:

A positive ANA does not necessarily mean that you have Lupus. There are several other diseases that also have a positive ANA. However, most persons with active Lupus do have a positive ANA. There are 11 criteria used to determine if Lupus is present, a person must meet at least four (4) of those eleven criteria. The "Lupus Foundation" website has a new interactive link "Could I Have Lupus" which is really helpful to those who feel that their symptoms may be due to Lupus. It is informative and easy to understand.

www.lupus.org

With reference to your questions: "Does the high C3 negate the high level of DS DNA antibodies? & "do I have to have a low level of C3 in order to be diagnosed with lupus?"

First, let me give you a bit of explanation so that you'll understand the tests. The complement system is one of the natural defense mechanisms that protects our bodies from infections and perhaps tumors. Measurement of complement components aids in the diagnosis of immunologic disorders, especially those associated with deficiencies of complement components (such as multisystem rheumatic diseases, such as systemic lupus).

Decreased levels of C3 are associated with autoimmune disease, neonatal respiratory distress syndrome, bacteremia, tissue injury and chronic hepatitis. Decreased levels of C4 may indicate disseminated intravascular coagulation (DIC); acute glomerular nephritis, chronic hepatitis and SLE.

Increased levels of both C3 and C4, in addition to increased concentrations of C-Reactive Protein, are linked to acute inflammatory disease and tissue inflammation (As happens in Lupus).

So doctors are looking for indications of inflammation (increased C3 & C4) &/or indications of auto-immunity and/or kidney involvement (decreased C3 & C4).

If Lupus nephritis (kidney involvement) is indicated in the C3 & C4 compliments, the DS DNA test ( along with antinuclear antibodies and levels of Ig & IgM ratio) help to support the diagnosis of Lupus nephritis and helps to determine the extent of damage caused by the nephritis. The IgG/IgM ratio of anti-dsDNA antibodies represents a significant parameter used by doctors, to distinguish patients with lupus nephritis from those without renal involvement. So, one test does not negate the other. Evaluation of anti-dsDNAisotypes is simply a diagnostic tool to define subsets within Lupus (SLE) patients who have different clinical manifestations. In particular, the IgG/IgM ratio of anti-dsDNA antibodies are used as a diagnositc marker for lupus nephritis during the course of the disease.

All of the tests are used as aids in determining if a condition exists and the extent of that condition.

Also, please know that, for diagnosis, Anti-dsDNA antibodies are frequently detected in active SLE, but they are not specific for SLE as they are also present in up to 30% of other disease groups. Therefore, doctors will use the aggregate results of all tests, personal history, and presenting symptoms to make a diagnosis. All tests are merely parts of a combination of things used to make a determination.

I hope that this has been helpful to you. Please let me know if it confused you further and/or if you need further information!

Peace and Blessings

Namaste

Saysusie

[Chezrofe]

I was diagnosed with LUPUS in 2000. I am now IN REMISSION as my rheumatologist says. I chose not to follow taking traditional WESTERN medicine but rather AYEURVEDIC and HOLISTIC approaches. I never took PLAQUENIL because side effects are blindness, and I NEVER took STEROIDS because they depress your immune system even further. I was on VOLTAREN and VICODEN for awhile before I chose to use NON-TRADITIONAL forms of healing. I am not on an medication now. I did COLONICS in a series of 3 cleansings over a months period of time. I use probiotics daily, a good one is REUTERI(5billion per capsule). I also drink KEFIR or eat organic yogurt daily. I don't hardly eat meat except maybe salmon or chicken once in a blue moon. I also follow a somewhat gluten free diet. Eating seaweed is also good. I generally cook with ALOT of pungent spices each with healing properties to balance the body. Some examples of the spices are TUMERIC, HOT PEPPER, GINGER, GARLIC, CUMIN, FENNEL, GARAM MASALA. I noticed that sugars and even sugar substitues are horrible for LUPUS. Tryy using natural suagrs like HONEY(acacia honey), agave, or maybe even stevia. I hope this helps. I feel your pain, because I suffered through it for 9 yrs. G-d Bless You!

[heathen]

ANA can be positive for ALOT of different things, not just lupus. definitely needs to be worked up, though. best wishes.

[Fiddle-Faddle]

I did a quick google search, and found that Lyme Disease and Lupus are often diagnosed (or mis-diagnosed) as each other. Apparently, Lyme can also cause high ANA levels. (Open Original Shared Link)

A few years ago, there were a few members here who had Lyme Disease, and who had been previously diagnosed with Lupus, MS, and various neuro disorders. Not to suggest that all Lupus and MS cases are Lyme (though some believe this to be true), though--I just want to suggest that you rule out Lyme, as I have run into so many people who have had it, it's starting to get scary. (I don't have it, AFAIK.)

Here are just the first couple of site I found--there are many, many more:

Open Original Shared Link

Open Original Shared Link

Hope this helps.

[nasalady]

I did a quick google search, and found that Lyme Disease and Lupus are often diagnosed (or mis-diagnosed) as each other. Apparently, Lyme can also cause high ANA levels. (Open Original Shared Link)

A few years ago, there were a few members here who had Lyme Disease, and who had been previously diagnosed with Lupus, MS, and various neuro disorders. Not to suggest that all Lupus and MS cases are Lyme (though some believe this to be true), though--I just want to suggest that you rule out Lyme, as I have run into so many people who have had it, it's starting to get scary. (I don't have it, AFAIK.)

Here are just the first couple of site I found--there are many, many more:

Open Original Shared Link

Open Original Shared Link

Hope this helps.

Thanks for the links, Fiddle-Faddle....very interesting!

[nasalady]

I did a quick google search, and found that Lyme Disease and Lupus are often diagnosed (or mis-diagnosed) as each other. Apparently, Lyme can also cause high ANA levels. (Open Original Shared Link)

FF, wow, that essay at the above link almost makes one think that there's no such thing as an autoimmune disease! It's all Lyme Disease!

There's just one little fly in the ointment for me.....lupus is the "family curse" in my family. Those few of my relatives who don't have lupus have some other autoimmune disease (Hashimoto's, celiac, and RA are popular too). I doubt that Lyme Disease is hereditary.

Seriously, there's no harm in asking to be tested for Lyme, but I'll be very surprised if that's the answer to my situation....but thanks again for the links! I'm quite sure that there are many people with LD who've been mis-diagnosed with all sorts of other illnesses, so it's really important to post this info in a forum like this!

JoAnn

[Fiddle-Faddle]

Lyme disease can be (sort of) hereditary if you were exposed to it in utero.

I've read that it's not uncommon for entire families to be infected. But that doesn't mean that that is what is going on in your family.

I've often wondered, though, if the Lyme spirochete is kind of like strep--that maybe everyone actually has it somewhere in their system, but it's not a problem for most people? If you're perfectly healthy, nobody would be testing you for Lyme, right? What if most people simply coexist with it, with no problems?

I've read that Lyme can cause gluten intolerance and/or trigger celiac--but I wonder if it's the opposite? That maybe those who already have some kind of gluten intolerance are then susceptible to Lyme, perhaps due to the leaky gut? Or not being able to coexist with the Lyme because of malnourishment, lack of proper of absorption of necessary vitamins, amino acids, etc?

[nasalady]

I've often wondered, though, if the Lyme spirochete is kind of like strep--that maybe everyone actually has it somewhere in their system, but it's not a problem for most people? If you're perfectly healthy, nobody would be testing you for Lyme, right? What if most people simply coexist with it, with no problems?

I've read that Lyme can cause gluten intolerance and/or trigger celiac--but I wonder if it's the opposite? That maybe those who already have some kind of gluten intolerance are then susceptible to Lyme, perhaps due to the leaky gut? Or not being able to coexist with the Lyme because of malnourishment, lack of proper of absorption of necessary vitamins, amino acids, etc?

I know....it's confusing! I was just answering a new post by a girl who's been diagnosed with Lyme, but she's had Hashi's for years, and she may have both celiac and Lyme. Which came first the chicken or the egg?

Do you know of any current members of this board who've been diagnosed with Lyme?

[nasalady]

UPDATE: 12/11/09

I have had one blood test for Lyme disease (Lyme ELISA), which was POSITIVE.

Now I have to have the Western Blot test. More soon....

JoAnn

P.S. Thanks, Alison, for urging me to be tested for Lyme!

[mslee]

Just now getting to this post...lots of helpful info here, Thank You!

I'm rusty on the labs, glad you got some answers.

Yes as for the 11 dx criteria, it counts if you have had the symptoms in the past.

I never thought I had the malar rash (do have sle lpus), because the it was never itchy or raised...looked like rosacea. But recently it looks just like that pic you posted with rough patches

I have also learned that the sun sensitivity does not always mean you get a rash, it causes dizziness, headaches, drained feeling, intense sleepiness.

Typically the treatment for most connective tissue/overlap/lupus like conditions is the same regardless of the exact condition...so you are on the right track.

Gemini, Hi we spoke a while ago...hope you are feeling better. I hope you can find a GOOD rhuemy, just to make sure everything is ok. I know it's no fun, but the earlier lupus is caught the safer we are. Just make sure your organs are in good shape. The Lupus Foundation has this page to help find Drs in your area...

Open Original Shared Link

Chez, I agree going about it as a naturally as possible is the best route. I am young, so I have opted not to take the pain meds or any meds I don't need to save organs. As of now I am med free...but think things are progressing so I don't know how long that will last.

Plaquanil is supposed to be one of the safer drugs to take, the eye damage is typically reversible once the med is stopped. But it never helped me, so I don't take it.

I do take the omega3's & heavy duty antioxidants to fight inflammation, plus vitamins & eat lots of those spices you listed. The gluten-free diet has forced me to eat pretty ridiculously healthy