1. Rhumies are not even taught about Lyme. It is only refered to as "other infectious diseases" in most of the literature and even in the training courses provided to them.

2. Positive anti-SM and anti-RNP are... AT BEST...ONLY... AT BEST... 60% reliable in diagnosing Lupus.

Here are a few "snips" I thought might be of interest. It may give you a resource to use to base questions on for the doc that cut off your antibiotics today. Again, I do not know if you have Lyme or Lupus. Just trying to shed some light.

Diagnosing Lupus

No single test can determine whether a person has lupus, but several laboratory tests may
help the doctor to make a diagnosis. The most useful tests identify certain blood
autoantibodies often present in people with lupus. For example, the antinuclear antibody
(ANA) test is commonly used to look for autoantibodies that react against components of
the nucleus, or "command center," of the patient's own cells. Many people with lupus test
positive for ANA; however, some drugs, infections, and other diseases also can cause a
positive result. The ANA test simply provides another clue for the doctor to consider in
making a diagnosis. There are also blood tests for individual types of autoantibodies that
are more specific to people with lupus, although not all people with lupus test positive
for these. These antibodies include anti-DNA, anti-Sm, anti-RNP, anti-Ro (SSA), and
anti-La (SSB). The doctor may use these antibody tests to help make a diagnosis of lupus.
Some tests are used less frequently but may be helpful if the cause of a person's
symptoms remains unclear. The doctor may order a biopsy of the skin or kidneys if those
body systems are affected. Some doctors may order a syphilis test because some lupus
antibodies in the blood may cause the test to be falsely positive. A positive test does not
mean that a patient has syphilis. Again, all these tests merely serve as tools to give the
doctor clues and information in making a diagnosis. The doctor will look at the entire
picture - medical history, symptoms, and test results - to determine if a person has lupus.
Other laboratory tests are used to monitor the progress of the disease once it has been
diagnosed. A complete blood count (CBC), urinalysis, blood chemistries, and erythrocyte
sedimentation rate (ESR) test can provide valuable information. (The ESR is a measure
of inflammation in the body. It tests how quickly red blood cells drop to the bottom of a
tube of unclotted blood.) Another common test measures the blood level of a group of
proteins called complement. People with lupus often have low complement levels,
especially during flares of the disease.

AND:
(I see a babesia/lyme pattern forming here. Have you been tested at a good lab like Igenex for Babesia?)

Antimalarials are another type of drug commonly used to treat lupus. These drugs were
originally used to treat the symptoms of malaria, but doctors have found that they also are
useful treatments for lupus. Exactly how antimalarials work in lupus is unclear, but
scientists think that they may work by suppressing parts of the immune response. Specific
antimalarials used to treat lupus include hydrochloroquine (Plaquenil), chloroquine
(Aralen), and quinacrine (Atabrine). They may be used alone or in combination with
other drugs and generally are used to treat fatigue, joint pain, skin rashes, and
inflammation of the lungs. Research doctors have found that continuous treatment with
antimalarials may prevent flares from recurring. Side effects of antimalarials can include
stomach upset and, extremely rarely, damage to the retina of the eye.

AND:

Anti-RNP
1. RNP abbreviation for ribonucleoprotein, the antigen that this antibody is directed
against
2. Anti-RNP associated with Mixed Connective Tissue Disease (MCTD)
3. Can be seen in SLE and other diseases

AND:
C. Hypocomplementemia
1. Congenital deficiencies
2. Severe malnutrition
3. Severe hepatic failure
4. SLE
5. Extra-articular RA
6. Vasculitis
7. Endocarditis
8. Infections
a. bacterial
b. viral
c. parasitic
9. Glomerulonephritis

AND:

1. HLA-B27
a. Reiter's
b. Ankylosing spondylitis
2. HLA-DR4
a. Rheumatoid arthritis
b. Sjogren's syndrome
c. Giant Cell Arteritis
d. Lyme arthritis
3. HLA-DR3
a. SLE
b. Dermatomyositis
c. CREST
4. a. HLA-B8
b. Myasthenia Gravis
c. Grave's disease
d. Chronic active hepatitis
5. HLA-A3
a. Multiple sclerosis
b. Hemochromatosis

***IMPORTANT****
Patient Study/ Medical: Had Lyme positive titers and positive for Lupus. Not fully
treated for Lyme.
http://www.stockton-press.co.uk/lup/v9n1/pdf/2300818a.pdf

AND:

Lupus patients make many other weird antibodies. (You will learn how and when to test
for these sometime.) For example, they tend to develop false-positive syphilis tests (*
"biologic false positives", BFP's). (AHHHH>>>>could it be Lyme????)

AND:

Kidney: ("The kidney is never normal in ANA-positive systemic lupus.")

Blood:
Patients with lupus have increased total serum gamma globulins ("polyclonal
gammopathy"; a lab test result).
Patients with "lupus anticoagulant" tend to have paradoxical thrombosis rather than
hemorrhage (Arch. Int. Med. 144: 510, 1985; Arch. Path. Lab. Med. 109: 946, 1985).
This was a subject for intensive investigation in the late 1980's. Related to --
but not identical with -- lupus anticoagulant are anticardiolipin antibodies that
cause spontaneous abortion (thrombosis and infarction of the placenta, or
more plausibly, improper implantation Proc. Nat. Acad. Sci. 90: 6464, 1993)
& thrombosis and are present in of patients with lupus. Both are related to
false-positive tests for syphilis.
And lupus patients can develop a bleeding tendency due to antibodies against
clotting factors (especially factor VIII), thrombocytopenia, and/or vasculitis.

AND:
Most lupus patients have anti-native (i.e., anti-double stranded) DNA, and this antibody
is unusual except in lupus patents. These usually also react with some ribonucleoproteins,
which may drive their production (J. Clin. Invest. 93: 443, 1994).
The few that don't have anti-native DNA will usually have anti-Ro/SSA (not specific for
lupus), or anti-Sm ("Smith" antigen, a nuclear RNP, specific for lupus, though present in
only 30%).
***Remember that many healthy people have low titers of anti-nuclear antibodies.***

AND: (NOTICE THE BUTTERFLY RASH...YOU HAVE NEVER MENTIONED YOU HAVE ONE) (also...ALL of these symptoms are found in Lyme!)

Table-5: 1982 Revised Criteria for the Classification of Systemic Lupus
Erythematosus

Criterion: Definition:
1. Malar rash Fixed erythema, flat or raised, over the malar eminences, tending to spare
the nasolabial folds
2. Discoid rash Erythematous raised patches with adherent keratotic scaling and
follicular plugging; atrophic scarring may occur in older lesions
3. Photosensitivity Skin rash as a result of unusual reaction to sunlight, by patient
history or physician observation
4. Oral ulcers Oral or nasopharyngeal ulceration, usually painless, observed by a
physician
5. Arthritis Nonerosive arthritis involving two or more peripheral joints, characterized
by tenderness, swelling, or effusion
6. Serositis Pleuritis - convincing history or pleuritic pain or rub heard by a physician
or evidence of pleural effusion, or
Pericarditis - documented by ECG or rub or evidence of pericardial effusion
7. Renal disorder Persistent proteinuria greater than 0.5 grams per day or greater
than 3+ if quantitation not performed, or
Cellular casts - may be red cell, hemoglobin, granular, tubular, or mixed
8. Neurologic disorder Seizures - in the absence of offending drugs or known
metabolic derangements, e.g., uremia, ketoacidosis, or electrolyte imbalance, or
Psychosis - in the absence of offending drugs or known metabolic derangements, e.g.,
uremia, ketoacidosis, or electrolyte imbalance
9. Hematologic disorder Hemolytic anemia - with reticulocytosis, or
Leukopenia - less than 4,000/mm^3 (4.0x10^9/L) on two or more occasions, or
Lymphopenia - less than 1,500/mm^3 (1.5x10^9/L) on two or more occasions, or
Thrombocytopenia - less than 100,000/mm^3 (100x10^9/L) in the absence of
offending drugs
10. Immunologic disorder Positive LE cell preparation, or
Anti-DNA: antibody to native DNA in abnormal titer, or
Anti-Sm: presence of antibody to Sm nuclear antigen, or
False positive serologic test for syphilis known to be positive for at least 6 months
and confirmed by Treponema pallidum immobilization or fluorescent treponemal
antibody absorption test
11. Antinuclear antibody An abnormal titer of antinuclear antibody by
immunofluorescence or an equivalent assay at any point in time and in the absence of
drugs known to be associated with "drug-induced lupus" syndrome

The proposed classification is based on 11 criteria. For the purpose of identifying patients
in clinical studies, a person shall be said to have systemic lupus erythematosus if any 4 or
more of the 11 criteria are present, serially or simultaneously, during any interval of
observation. ( From: Tan, E.M., Cohen, A.S., Fries, J.F., et al. The 1982 revised criteria
for the classification of systemic lupus erythematosus (SLE). Arthritis Rheum. 25:
1271-1277, 1982)
Etiology and Pathogenesis. The cause of SLE is unknown. The presence of multiple
autoantibodies and other immunologic abnormalities (decreased suppressor T-cell
function, spontaneous B-cell activation, impaired macrophage function) point to basic
defects in immunoregulatory controls that normally maintain self tolerance.
Contributory factors may be genetic, hormonal, or environmental in nature. Genetic
influence is suggested by family clusters of SLE, significant (approx. 25%) concordance
of SLE in homozygous twins, and associations with HLA (DR2, DR3) and with inherited
C' deficiencies. (Genetic studies of animal models indicate that multiple genes are
involved in SLE-like disease expression). Hormonal influence is suggested by the 9:1
female:male ratio of SLE, the predilection for females during the reproductive years, and
the frequency of onset in the early postpartum period. (In laboratory animal models,
estrogens increase and androgens decrease the incidence of SLE-like disease).
Environmental factors are indicated by drug-induced (iatrogenic) lupus syndromes
caused by procainamide, hydralazine, and other drugs, and by skin sensitivity to sunlight
exposure which may provoke the onset of SLE. The possible etiologic role of a specific
infectious agent is speculative at this time.
Immunological Aspects of SLE. The discovery in 1948 of the "LE cell" was a major
advance in diagnosis and led to the recognition that SLE and related CTDs are associated
with the presence of antinuclear autoantibodies (ANAs) (see Table-6). ANAs are a
generic group of serum, mainly IgG, antibodies which react by indirect
immunoflurescence test with acetone-fixed cell nuclei from a wide range of tissues and
animal species (thus ANAs lack tissue and species specificity).

AND:
ANA stands for Antinuclear Antibody. This literally means 'substance against the cell
nucleus'. The nucleus is the 'headquarters' of the living cell, therefore the ANA can
damage or destroy cells & tissues.
95%-98% of patients with SLE will have a positive ANA test, but the majority of people
with a positive ANA test do not have SLE. A positive ANA test can be found in many
conditions, including Sjogren's Syndrome, scleroderma, rheumatoid arthritis, & mixed
connective tissue disease. Many normal healthy people will also have a positive ANA
test. Therefore a positive ANA test, on it's own, does not mean that person has lupus.
Because of this, the physician has to look very carefully at the titer (number) & pattern of
the ANA test. The titer shows how many times the technician had to mix fluid from the
patient's blood to get a sample free of ANAs. Thus a titer of 1:640 shows a greater
concentration of ANA than 1:320 or 1:160, since it took 640 dilutions of the plasma
before ANA was no longer detected. The apparent great difference between various
titers can be misleading. Since each dilution involves doubling the amount of test fluid, it
is not surprising that titers increase rapidly. In fact, the difference between titers of 1:160
& 1:320 is only a single dilution. And it doesn't necessarily represent a major difference
in disease activity.
ANA titers go up & down during the course of the disease, & may or may not reflect
disease activity. Therefore it is not always possible to tell from the titer how severe a
person's lupus is.
A titer of 1:80 or lower is usually considered negative.
The pattern of the ANA is studied by microscope. The technician examines a specially
prepared slide that shows where antibodies attack the nucleus. Certain antibodies attack
certain areas of the nucleus, producing four specific patterns.
The rim (peripheral) pattern is the most specific pattern for lupus, while the
homogeneous (diffuse) pattern is the most common pattern seen. The remaining
patterns are the speckled and nucleolar patterns. In some cases the pattern helps the
doctor decide which of the autoimmune diseases is causing the problem and which
treatment program is appropriate.
Because a positive ANA test can be found in other diseases as well as SLE, the
physician will use a positive ANA test as only one factor in determining whether or not a
patient has lupus. A positive ANA test does not mean that a person has lupus. The
physician needs to find other clinical features such as butterfly rashes, arthritis, pleurisy,
blood abnormalities, kidney disease, etc., in addition to a positive ANA test before
making a diagnosis of SLE.
The reliability of the ANA test depends upon the laboratory. Many variables can interfere
with the test & give false numbers. The accuracy of the test can also vary, depending on
many factors, such as the strength of the fluorescent antibody, or even the quality of the
microscope used.
Once a patient is found to be ANA positive, the physician may want to further investigate
which antigen in the nucleus is responsible for the positive ANA test. The knowledge of
which antigen is responsible for the positive ANA test can sometimes be helpful in
determining which disease is present. For instance, antibodies to DNA (the protein that
makes up the body's genetic code) are found primarily in SLE. Levels of these
antibodies in the blood can be useful to the physician in following the course of lupus,
especially in patients with kidney disease. Anti-DNA levels, however, do not always
perfectly match the clinical course of lupus kidney disease. Antibodies to histones (DNA
packaging proteins) may be very helpful in determining whether a patient has
drug-induced lupus. These antibodies may be found in SLE as well. Antibodies to Sm
antigen are found almost exclusively in lupus, & when present, help to clinch the
diagnosis of SLE. Antibodies to RNP (ribonucleoprotein) are found in a variety of
connective tissue diseases. When present in very high levels, they are indicative of
mixed connective tissue disease, a condition with features of SLE, polymyositis, and
scleroderma. Antibodies to SS-A are found in both lupus and Sjogren's syndrome and
are sometimes associated with babies who are born with neonatal lupus.

AND:
This response submitted by on 11/23/99.
Email Address:

FM is not autoimmune.
Some autoimmune disease do cause FM like symptoms though. Some people with FM
can have low positive ANA. but not what one would expect in something like lupus. You
should see a good rheumie and get thorough blood work done for autoimmune:
AntiDNA, Anti SM, RNP antibodies, etc. also thyroid and thyroid antibodies,
antimicrosomal.
I had low elevated ANA and ended up having lyme disease.
This could be something entirely other than FM

AND:

Lupus Support Board http://www.healthboards.com/lupus/317.html

Sometime back in October or maybe November, on either the MGH MS or Lyme forum, I told you WHY some people with various autoimmune diseases, including Lupus, might show a false-positive Syphilis testing.

People with autoimmune disease, and also other disorders including some infectious diseases such as Lyme, have been found to have a relatively high incidence of
antiphospholipid antibodies (APL).

That APL has been frequently found in confirmed Lyme cases is without controversy, since Dr. Steer himself (the proverbial god of mainstream Lyme)co-authored a journal article on this fact some 10 years or more ago.

Now... the initial basic testing for syphilis uses an antigen that contains a phospholipid base. When you read information stating that false-positive results for syphilis may be due to the presence of various underlying autoimmune diseases, it's BECAUSE those with autoimmune diseases (not all but many) tend to have APL's and it's
***THE PRESENCE OF APL'S THAT CAUSES FALSE-
POSITIVE REACTION IN SYPHILIS TESTING ASSOCIATED WITH AUTOIMMUNE DISEASES*** This is an undisputed, non-controversial fact - they've known it for decades!

If I'm remembering correctly, you said you've tested NEGATIVE (more than once I think) for antiphospholipid antibodies. So, even if you truly do have Lupus, MCTD or some other related autoimmune problem, you already know you DON'T have the elevated APL's which causes the false-positive reaction to syphilis associated with autoimmune diseases.

So... that again leaves the question of why you have IgM positive and equivocal Lyme IgG western blot results and a false-positive syphilis test( was proven false by subsequent testing, correct?).

If it's not Lyme... what caused the false-positive syphilis test since it's surely not an autoimmune disorder if you're negative
for APL's?????

I looked up that Sm-RNP test. The Sm part of it is Smith antibodies and from what I can tell they're seen only in those with Lupus - but only around 30% have it. The RNP is ribonucleoprotein and it's not very disease specific since it's seen in about 80-90% of those with various autoimmune disorders, including Lupus and less frequently in other diseases.

The problem with that particular test is that it's essentially an immunoassay and just like the Lyme ELISA and every other immunoassay, the sensitivity is high but the specificity leaves much to be desired. It's really just measuring an elevated RNP level since any Sm antibody present is bound in complex to the RNP and you can't get any discrimination without running separate testing.

So I guess in essence what I'm trying to tell you Gisells is that even if you DO have Lupus or some related autoimmune thing going on (and I certainly would not be convinced by this one test), it doesn't explain the positive Lyme results nor the false-positive syphilis test.

Certainly there's always the possibility you could be lucky enough to be blessed with both diseases but personally, I'd have a real problem with just chalking off the Lyme and false-syphilis results. Without the presence of those APL's, the "autoimune disease" excuse for the false syphilis test is a fairy tale.

Wishing you well,
Jezebel

I have hated the word "auto-immune" ever since I got Lyme. It's seems like such a wastebasket type of illness. They can't explain it so they decided your body is attacking itself. I believe this to be quite humorous actually. Why in the world would our bodies do this to us??? The tests they use to determine this phenomena don't seem to be any better than any LD test we have. They can be positive in some and negative in others blah, blah, blah.

If you get a chance look at the rheumatic.org website and you will see that they are treating Lupus patients with abx too and have been for years. They seem to have the most success with minocycline but it varies it seems. Slow and long is the method. Most people seem to take abx only 3x a week but it varies too. Many take abx for many years. They don't have complications and they get better. Many of these people seem to be in the South which doesn't surprise me. They seem to think it is an infection with some type of mycoplasma bacteria. Possibly an old strep mutated.

My aunt has scleroderma pretty bad (grew up in VA with lots of ticks....) She tried to start minocycline but wouldn't keep it up. She is pretty sick.

My thinking anymore is whatever works!!! I don't care what disease they say you have whatever makes you feel better - do it!!

Of course I am not condoning not seeking treatment for something fatal but if that is your wish then do it.

Rhuematolgists are the least helpful docs in the business.

Take care and keep reading.

Lyme Disease Misdiagnosed as Lupus http://www.geocities.com/HotSprings/Spa/6772/lupus-index.html

This site contains a spearate page for each of the following:

1. Introduction to Lyme disease and lupus, including nine reasons for
false negative Lyme disease test results
2. Medical and scientific abstracts on Lyme disease and lupus
- Abstracts supportive of a connection between Lyme disease and lupus
- Information not supportive of a connection between Lyme disease
and lupus
- Other abstracts pertaining to Lyme disease and lupus
3. Other information on Lyme disease and lupus
4. Media articles about Lyme disease and lupus
5. Lyme disease patients previously misdiagnosed with lupus
6. Resources for information about Lyme disease
7. Resources for information about lupus

Special topics for Lyme disease and lupus:

Rheumatoid Factor (RF) and Lyme disease http://www.geocities.com/HotSprings/Retreat/1593/rf-lyme-disease.txt

Antinuclear antibodies (ANA) and Lyme disease http://www.geocities.com/HotSprings/Retreat/1593/ana-lyme-disease.txt

---
The web site is:

Lyme Disease Misdiagnosed as ... http://www.geocities.com/HotSprings/Spa/6772/lyme-misdiagnosed-as.html

Also see:

Lyme Disease in the United States and Canada http://www.geocities.com/HotSprings/Spa/6772/lyme.html

Lots Of Links On Lyme Disease http://www.geocities.com/HotSprings/Oasis/6455/lyme-links.html

I saw your topic. Wasn't sure how i could help but was concerned so I opened it and started reading.

WOW! I am impressed. You guys are awesome.

How are you doing now Giselle?

I don't frequent this board too much anymore - but I had to reply to your post.

I was MIS diagnosed with Lupus for many years when it was rally Lyme. My ANA was high , and I had antibodys to smooth muscle also.-

Why don't you just go ahead with the antibiotics... it's possible Lyme and Lupus are one in the same for you - as it was for me.

Do the least immunosuppressive therapy first - which is abx. You can't afford to risk immunosuppressants- which is what tehy'll want to give you for Lupus.

Geesh- anyone know how Gisell turned out????????

Barb