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» LymeNet Flash » Questions and Discussion » Medical Questions » lyme or lupus??

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Author Topic: lyme or lupus??
threefries
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I don't have a diagnosis, so how do I know whether it's lyme or lupus.

They have similar symptoms and both have tests that are known to be unreliable.

Does anyone know the differences???


Posts: 50 | From Sugar Hill, Ga, USA | Registered: Feb 2005  |  IP: Logged | Report this post to a Moderator
treepatrol
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What is lupus? from here http://www.lupus.org/education/factsheet.html

Lupus is a widespread and chronic (lifelong) autoimmune disease that, for unknown reasons, causes the immune system to attack the body's own tissue and organs, including the joints, kidneys, heart, lungs, brain, blood, or skin.
The immune system normally protects the body against viruses, bacteria, and other foreign materials. In an (((autoimmune))) disease like lupus, the immune system loses its ability to tell the difference between foreign substances and its own cells and tissue. The immune system then makes antibodies directed against "self."

I dont think so.

Autoimmunity

The immune system is really attacking a bacterial infection (ie all the Lyme bacteria) that can live INSIDE our own cells, including our nerve and immune system cells.

This causes the appearance of the immune system attacking itself, when in reality it is destroying the "host" cells that the bacteria are living in.

[/b][/QUOTE]Killing of Lymphocytes by Spirochetes Some autoimmune disease HUH?


Attachment of B. burgdorferi to primary murine lymphocytes. Scanning electron microscopy of coincubation mixtures containing B. burgdorferi and immunomagnetic bead-purified lymphocytes (L) showed that spirochetes (S) adhere to immobilized cells but not to the antibody-coated beads (B). Examination of paired stereomicrographs showed that attachment occurred at variable locations along the axis of the spirochete. However, adherence was observed most frequently in association with the terminal ends of filopodia extending from the surface of immobilized lymphocytes. Scale bar, 0.5 �m.


Intracellularity of Bb

Get a LLMD and get Tested through them quit wasting your money and maybe your life.

[This message has been edited by treepatrol (edited 02 March 2005).]


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Lymetoo
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The problem with Lyme tests is NOT that they have false positives......it's that there are very often false NEGATIVES. So if the test says you don't have Lyme, you really need to check further in case it's false.

If it's positive, YOU HAVE LYME.

If your test for Lupus shows positive, you could still have lyme. I had an ANA that was positive, but with Lyme treatment that test later showed negative.

So, have an ANA......but be sure to be thoroughly checked out for Lyme....and I mean thoroughly.

------------------
oops!
Lymetutu


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Lymetoo
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quote:
Originally posted by treepatrol:

Autoimmunity

The immune system is really attacking a bacterial infection (ie all the Lyme bacteria) that can live INSIDE our own cells, including our nerve and immune system cells.

This causes the appearance of the immune system attacking itself, when in reality it is destroying the "host" cells that the bacteria are living in.



Very important info......and lovely pictures, tree!

------------------
oops!
Lymetutu


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James H
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For being 18 years old you ask some pretty smart questions.

--------
That was meant as a compliment, by the way!

[This message has been edited by James H (edited 02 March 2005).]


Posts: 714 | From San Antonio TX | Registered: Oct 2004  |  IP: Logged | Report this post to a Moderator
James H
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My thinking... I was in that situation 8 or 9 months ago... is use the limited resources to check for the illness that is treatable first... so if it is found you can start some treatment with the least delay.

Also, despite the lousy tests you can get a very definite diagnosis if you do have it. It is a tangible, living organism that can even be seen under a regular microscope. Just a common one that might be in a high school biology class lab. (They are very hard to find, but sick people can be very motivated lookers!)

If you find one of them indirectly with one of the blood tests, or even find one with a lowly microscope, you know you have it and you know what you need to pursue.

I know this, because I found Borrelia spirochettes in my own tissue visually BEFORE finding a Dr.

This is not the way it is normally done, but in my case it gave me the certainty to go to alot more trouble and expense to track down a Dr., get the necessary tests for a diagnosis the insurance would accept.

As it turned out both me and my wife have it, and the Igenix Western Blots lit up like christmas trees. We are being treated and already are getting better.

A negative Lyme test does not mean with any certainty you do not have lyme... but if you have any positive test (or actually see one of the little devils under a scope like I did)... you have it and you know what to pursue.

The important point is you CAN get an absolutely definite lyme diagnosis... at least in the case of a positive one.

My thinking is test for the condition with a tangible, identifiable cause, one that can be treated first.

Just an opinion.

By the way, Jan (Recipegirl) makes good points. Please keep your parents in the loop, you will need them and someday they will surprise you by being there when you need them the most. There are instincts we parents have and we can't ignore them... sometimes they just take a little while to kick in!

And yes, we can only make suggestions and offer opinions... the Dr's have to make the diagnosis.

[This message has been edited by James H (edited 02 March 2005).]


Posts: 714 | From San Antonio TX | Registered: Oct 2004  |  IP: Logged | Report this post to a Moderator
threefries
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Quote: James H

For being 18 years old you ask some pretty smart questions.

Reply:
I try to ask lots of questions, otherwise I sit here and nothing gets done. No one but me knows how I feel, so I have to act.


So, lyme is treatable, lupus is not??

So, pursue lyme, then lupus?? I just want to be clear.

or from treepatrol - are you saying lyme is lupus?? or that some with lupus really have lyme???

Thanks for the responses


Posts: 50 | From Sugar Hill, Ga, USA | Registered: Feb 2005  |  IP: Logged | Report this post to a Moderator
lymiecanuck
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Hi,

Great post Tree!!

My opinion as this happened to me as I was tested many times for ANA and was negative everytime.

Then...I was undertreated for lyme and went several months without adequate treatment and got sicker.

Now.... My ANA is positive. A low positive and no, I havn't been dxd with lupus. I kept leaning towards lupus too, as many have as I presented alot like lupus.

Many who have been dxd with lupus actually have untreated lyme.

There is a growing number of alternative physicans actually in medical commintiy who don't beleive the "autoimmune" theory.

Check out the Roadback foundation. They are using abx for RA, scleroderma etc, which are supposed to be autoimmune disease and they are getting better.

Some dxd with lupus on top of lyme get treatment, but wonder if is cause of another infection like a co-infection as they use an anitparistic drug for this.

Untreated lyme can cause the immune system to start showing up abnormal on tests.

Hope this makes sense, I am very tired today.

Good luck and get a LLMD.

Lymiecanuck


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Aniek
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I would recommend pursueing everything. There is a good possibility you have Lyme, but we do not know your total medical history and most of us aren't doctors.

I think there are 3 main points you should take away from these postings:

1. Lyme mimics many other illnesses. So it is possible that your symptoms appear to be Lupus, but are actually Lyme.

2. Nobody knows what actually causes Lupus. it is possible that Lupus is your body's reaction to an infection. It is also possible that Lyme may be an infection that causes Lupus.

3. Many people on this board know somebody, or of somebody, who was diagnosed with Lupus, MS, or a similar disorder who improved with Lyme treatment.

Unfortunately, medical science hasn't made Lyme, Lupus or many other autoimmune disorders a top priority. There is so much we don't know.


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James H
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I am also of the opinion that Lupus, MS, Fibromyalgia and a few other things are probably symptoms with other underlying causes, rather than diseases in themselves.

But... I was just suggesting some problem solving logic to utilize scarce resources in a way that prioritized tests and exams that have the capability of a definite, indisputable diagnosis and that would nullify the need to explore all the others if found. That failing, other diagnosis that are based "it wasn't A, B, or C, so maybe it is D" type logic can be explored.

The idea is to hit the higher probability targets that can be definitively diagnosed first.

The other very important logic element is to design the sequence so that an early, tentative diagnosis that turns out to be WRONG... it cannot result in a WRONG treatment that causes more harm.

For instance, if a Doc orders an ELISA "No-Lyme-Here!" test, gets the usual negative, and decides someone must have Lupus based on having ruled out Lyme... so starts pumping them full of Prednisone for instance.. the results to the person's health would be catastrophic if they did indeed have Lyme afterall. (I'm just making an illustration... that may not be what the Doc would prescribe.)

On the other hand if the first diagnosis is Lyme and the normal ABX treatment is used, it is less likely to harm, and may help if the problem was something else.

So... design the sequence to as to avoid HARM from wrong initial guesses.

First of all... Do no harm!

Please understand where I am coming from... I am not a Dr., just a software engineer with a spirochette problem... and a really cute sweetie pie wife who is a nurse!

My post was more about allocating your scarce resources to improve your chances of getting help to feel better the soonest without hurting yourself along the way.

And yes, it is very treatable. My Dr. is of the opinion that it cannot be completely eradicated with what we have now, but you can get your health back and have a good life.

I would like to explain the entire process a good Lyme Dr. might use to do a workup and come to a diagnosis. Alot of it involves experience and observation, having seen so many other cases. It involves much more than a blood test or two. If you get a positive diagnosis, it is definitive.

I hope your visit goes well and you get some help!

I was complimenting you on your question asking... keep it up!

Regards,
James

[This message has been edited by James H (edited 03 March 2005).]


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Lymetoo
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quote:
Originally posted by James H:

The other very important logic element is to design the sequence so that an early tentative diagnosis that turns out to be WRONG... it cannot result in a WRONG treatment that causes more harm.



Very true! I know alot of Lupus patients end up taking steroids, and if you actually have Lyme instead of Lupus, you'll be in real trouble. The steroids will make the Lyme go deeper because they suppress the immune system.

------------------
oops!
Lymetutu


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Aniek
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I agree with you James. Prioritizing and staying away from steroids and other treatment that can cause harm is important. I just wanted to make sure it was understood that nobody was suggesting to only pursue Lyme.
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Lymetoo
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Severe Lyme disease may lead to other ills, UMDNJ study finds

Tuesday, March 01, 2005

BY ANGELA STEWART
Star-Ledger Staff

People who suffer from a prolonged, more severe form of Lyme disease
also
may be prone to developing autoimmune illnesses such as arthritis and
heart
disease, a new study shows.

Researchers at the University of Medicine and Dentistry of New Jersey
in
Newark made the discovery in a laboratory study of mice, where they
found
genetic similarities between the bacteria that cause Lyme and other
bacteria
known to trigger various autoimmune diseases.

"These mice had a worse (Lyme) disease, much more chronic and it
lasted for
a long time," said Elizabeth Raveche, an immunologist at the UMDNJ-New
Jersey Medical School and principal investigator for the study. "That
gives
some insight as to what happens in humans, as not everyone who gets
Lyme
ends up with a lifelong problem, but some individuals do."

The research appears in the latest issue of the Journal of Clinical
Microbiology.

Lyme disease, caused by the bacteria Borrelia burgdorferi and
transmitted by
a tick bite, peaks in the spring and summer months. It can affect the
skin,
nervous system, joints and heart. Individuals can develop a bull's
eye rash
surrounding the site of the tick bite.

In the study, Raveche and her colleague, Steven Schutzer, another
UMDNJ
immunologist, found that the Osp-A protein of the Lyme bacteria shared
molecular similarities with another protein, Streptococcus pyogenes
M, known
to cause autoimmune diseases, including rheumatic heart disease and
arthritis.

According to Raveche, in certain individuals with Lyme, antibodies
produced
to fight the condition also can cross-react with one's own tissues
and cause
prolonged illness in people genetically predisposed to autoimmune
disease.

"All the mice had a genetically programmed immune defect leading them
to
produce antibodies capable of reacting with the (Lyme) bacteria as
well as
their own tissues, resulting in arthritis," she said.

"This may show some of the reasons why people react differently and
why Lyme
causes such a chronic illness in some people and mild disease in
others,"
said Elizabeth Chalom, pediatric rheumatologist on staff at Saint
Barnabas
Medical Center in Livingston,.

Chalom said the same pattern is true in the many people who develop
strep
throat, with only a few of those individuals going on to develop acute
rheumatic fever, which is a bacterial joint infection.

"The antibodies their body makes to fight the strep can cross-react
and
cause arthritis," she said.

Raveche said a second study is underway that will attempt to further
identify a target gene that could interfere with the cross-reaction
process
so that severe Lyme symptoms won't develop in people prone to
autoimmune
illnesses.


------------------
oops!
Lymetutu


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