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» LymeNet Flash » Questions and Discussion » Medical Questions » Possible Misdiagnosis of Lupus?!

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Author Topic: Possible Misdiagnosis of Lupus?!
ishandraaa
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Got my blood work back finally and they tell me I have Lupus, not Lyme.

::TEST RESULTS::

-Lyme/ Western Blot-Neg (This was not the band test, I'm considering this test absolutely useless)

-RBC- low

-Hemoglobin-low

-Hematocrit-low

-Hexagonal Phospholipid Neutral- High (Lupus)

-Platelet Neutralization-High (Lupus)

-A/G Ratio- High

-Alkaline Phosphatase- Low

-ANA- Neg

-Febrile Antibody Profile- Neg

-Not tested for IgM, IgG, IgA levels. Since my C-Reactive Protein was okay.


I did a bunch of other blood tests, but this is everything that came back off.

Question? Even though the two Lupus Anticoagulant tests were high/ positive does that automatically mean I have Lupus or maybe my body is producing something because of Lyme or other?! Wondering cause the ANA test was negative. Which I considered a no-brainer for LUPUS.

My blood count has been low every time I get it tested. At least the last couple years. In fact they are lower now than they were a year ago.

I know this may not make sense to anyone, just thought I’d throw a line and see if it catches any information!

I don't feel like Lupus is right, but I'm no DR. I just done have the butterfly rash OR sensitivity to the sun as do most Lupus sufferers.

Could Lyme be the reason I have those certain antibodies showing up? Or maybe false positives?

--------------------
Ishandra.

Posts: 55 | From Texas | Registered: Aug 2018  |  IP: Logged | Report this post to a Moderator
dbpei
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You are probably right to trust your intuition. I had some high markers for lupus a couple of years ago and asked the doc that I see at Spaulding (Dean Lyme Center) in Boston about this.

She told me that this is very common with Lyme patients and there are many false positive DX's of lupus when it is actually lyme disease causing some of these results.

Those markers are now normal following IVIG treatment and a long bout with IV rocephin. I am confident that I don't have lupus.

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Tincup
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Some things to consider...

Follow your gut.

This is the time to do all of the tests and see all the doctors you can. Do this BEFORE you are locked into a diagnosis that you may be concerned about or doubt for the rest of your life.

Treatment for lupus will not only NOT help if it is Lyme or TBD's, it can make you worse.

Babesia can cause low RBC's, low H & H also.

A deficiency in zinc may cause decreased levels of Alkaline Phosphatase. Malnutrition or protein deficiency as well as Wilson disease could also be possible causes for lowered ALP.

I would NOT settle for a lupus diagnosis based on these tests. Not at all.

I highly recommend you go to an EDUCATED Lyme treating doctor to rule in or out TBD's. A GOOD ONE! If you have to travel, so be it.

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
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Tincup
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QUOTE- "It is important to realize that even though 98% of people with lupus will have a positive ANA, ANAs are also present in healthy individuals (5-10%) and people with other connective tissue diseases, such as scleroderma and rheumatoid arthritis.

Moreover, about 20% of healthy women will have a weakly positive ANA, and the majority of these people will never develop any signs of lupus.

One source cites that some ten million Americans have a positive ANA, but fewer than 1 million of them have lupus.

Therefore, a positive ANA test alone is never enough to diagnosis systemic lupus. Rather, a physician will order an ANA test if the patient first exhibits other signs of lupus.

This is because by itself, the test has low diagnostic specificity for systemic lupus, but its value increases as a patient meets other clinical criteria."

https://www.hopkinslupus.org/lupus-tests/lupus-blood-tests/

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www.TreatTheBite.com
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Tincup
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https://resources.lupus.org/entry/what-doctors-look-for

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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Tincup
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I'd left to do some other things and just saw this report from Texas. It tells of a new strain of Borrelia just found in Texas. (Note the publication date isn't till NOVEMBER 2018.)

Testing for it using regular tests would be negative.

Thought you'd like to see it.

https://www.ncbi.nlm.nih.gov/pubmed/30160650

--------------------
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www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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Tincup
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Now go away little girl and leave me alone.

I want to do my house work! I REALLY, REALLY want to do it!

I want to do it so badly I can hardly stand it!

[lol]

--------------------
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www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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ishandraaa
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Ummmm... okay?! I’ll do what I can. I’ll look into it I guess. ...

--------------------
Ishandra.

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Tincup
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Or not.

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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sixgoofykids
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It can be lupus and something else causing the lupus to be an issue. I had a friend whose daughter was diagnosed with lupus. When they got rid of a mold problem in their air conditioning vents, it went away.

She also cleaned up her diet .... for her, she went vegan (I know it's good for some, but not everyone).

So even if it is lupus, if Lyme/mold or some other illness is present, treating the other issue could make the lupus become insignificant.

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sixgoofykids.blogspot.com

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sixgoofykids
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And ignore Tincup's attitude, her cabana boys must be on vacation again.

--------------------
sixgoofykids.blogspot.com

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ishandraaa
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quote:
Originally posted by sixgoofykids:
..treating the other issue could make the lupus become insignificant.

You know, I am beginning to think that it could be some sort of environmental issue that has been making me worse lately.

It has been raining a lot where I live and humid as all get out. Not to mention all the dust we have been having.

However, I can't just get up and move..or live in a bubble. [Frown]

I've been looking into air purifiers to go in my house. I've also changed all my air vent filters. That hasn't seemed to help though.

I should probably have them flushed and cleaned.

--------------------
Ishandra.

Posts: 55 | From Texas | Registered: Aug 2018  |  IP: Logged | Report this post to a Moderator
   

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