posted
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
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
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.
Posts: 2386 | From New England | Registered: Aug 2011
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
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.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
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."
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
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.
posted
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.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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