Hey guys= please please respond if you are knowledgable because I am freaking. I just read blood test results and see that my centromere antibodies are detected at 1.7...reference range <1 is normal.
Of course, I made the horrible error of googling this and see that it means I probably have scleroderma. I am scared and panicky. Please let me know if you know anything about this or if this could be a mistake -please please let it be a mistake.
My LLMD didnt even mention it to me despite having these tests back, maybe I am freaking out prematurely... this is not abnormal for me.
Thanks Renny
Posted by nspiker (Member # 22824) on :
Many have found their way to lyme treatment, as the underlying infectious cause of SD.
Posted by renny1985 (Member # 25222) on :
So is it possible these blood tests are solely indicative of lyme and not of a future onset of scleroderma?
I just cant handle having something ELSE... especially something so progressive and deteriorating. I am scared for my future...
Posted by nspiker (Member # 22824) on :
Many have scleroderma in remission with lyme treatment.
Posted by renny1985 (Member # 25222) on :
I dont understand.. I am sorry- can you maybe explain a little bit? What does this mean for me...
Posted by Pinelady (Member # 18524) on :
I believe it means those that have it need a lot more treatment or maybe with some intense immune boosters.
I would love to see some of us get trials of the new drug China is using made from Curcumin.
It sound so much better than IVIG...
Posted by renny1985 (Member # 25222) on :
Thanks Pine Lady... I am wondering what this means for my future as far as the development of other conditions though? LIke does this mean I am going to develop scleroderma? Or is it a problem in the present? Why did my LLMD not mention it? Could it mean NOTHING?
I am herxing.. which means for me I cannot stop crying, I feel like my life is ending and I am scared of just about everything. not sure what to do with myself
Posted by nspiker (Member # 22824) on :
Sorry to be so vague. I recommend you look through the roadback website, because there are many success stories of those with scleroderma that have reversed their disease.
I know a little about the anti-centromere test, because my MIL was just diagnosed with scleroderma. Normally, a positive test implies limited scleroderma, not systemic scleroderma.
That said, you would need to be checked out by a rheumatologist. Why was this test run to begin with? Are you having autoimmune symptoms?
My point is that the Roadback website is for people with autoimmune diseases, including scleroderma. It's foundation is; there is an infectious basis to autoimmune diseases. They believe in minocin and IV clindamycin to prevent progression and reverse scleroderma. There are many who have scleroderma, or like you have blood tests, or even symptoms that are cured with lyme treatment.
You may never develop scleroderma symptoms, and with lyme treatment, your anti-centromere may subside. There are many who have put their SD into remission just with minocin alone.
I would focus on treating lyme and co-infections, and your anti-centromere antibodies will most likely resolve. (That's just my opinion, based on the research I've done).
Posted by lou (Member # 81) on :
Lyme causes a number of autoimmune markers to appear, and people who successfully treat it have those markers disappear.
So, your testing result is not unusual for lymed people, in having one kind of autoimmune marker or another.
Posted by BoxerMom (Member # 25251) on :
Many Lyme patients develop autoimmunity - antibodies that attack their own tissues. This is due to the Lyme and other infections. It is not a separate condition, even though it comes with its own diagnosis.
As you are in treatment and herxing, the likelihood of developing scleroderma is remote. Once you are in remission, you will not develop scleroderma.
Autoimmune markers like yours tend to go away long before the Lyme symptoms themselves resolve. Your doc should retest you every 6-9 months.
The current thinking with autoimunity is that you need to have the genetic marker, one or more chronic infections, and high inflammation to develop the condition. This would mean you have the genetic marker for scleroderma. As long as you treat your infections and your inflammation comes down, you will not develop the disease.
Please don't panic.
Posted by renny1985 (Member # 25222) on :
Oh my gosh, thank you all so much for the clarification. Herein lies the trouble of me googling my blood results. Its just that after so many years of misdiagnosis- I struggle to trust docs or believe anything I hear.
Thank you though. I feel less anxious and less like I was just given a death sentence (my own fears and herxing). I have been in treatment for lyme since april but have been sick 15 yrs. I have a positive ANA and now the new auto-immune marker.
I am glad to hear it is not an ADDITIONAL or separate condition. I feel like I have WAY enough to deal with health wise with the lyme and coinfections.
Thank you for your clarification nspiker. Sorry to keep asking you for more clarity! I wish the best for your MIL. I am glad you guys were able to calm me down a bit.. the anxiety does not help my physical symptoms one iota.
RENNY
Posted by renny1985 (Member # 25222) on :
let me also note, I have no idea if it is a "new" autoimmune marker, as I have never been tested for centromere ab before.
Posted by BoxerMom (Member # 25251) on :
The ANA will return to negative at some point in treatment, probably way before you are in remission.
I had a weird lab at the beginning of my Lyme journey - my CD57 was over 500. My doc explained that this meant my immune system was hyperactive and making faulty cells. Very dysfunctional.
I waited 2 years to retest and by then it was down to 87. Not a great number, but more normal for a Lyme patient.
I was relieved.
I was also sick for 15 years when I began treatment. You will get better.
Posted by renny1985 (Member # 25222) on :
Thank you boxer mom. I hope so. I really like being alive and I really hate being sick, like so many of us here. I just want to live my life to the fullest. I feel like Lyme is always getting in my way.
I hope you got better/are in remission boxermom. I wouldn't wish this illness on anyone.
Abnormal labs can be very scary, as I have learned many times over. I need to be careful what I look up online and how I interpret. Oy.
Again, thanks everyone.
Posted by Camp Other (Member # 29797) on :
An ANA test can be an indicator of so many different things and nothing at all since it can fluctuate. It only becomes meaningful when it is tracked side by side, along with symptoms.
One thing I have learned with abnormal lab tests while treating Lyme and coinfections is that the reason they are abnormal can be any of a number of things. In one case, stopping meds for a while returned my labs to normal; in other starting meds did the same.
Go figure.
This is where having a well-trained and experienced medical professional helps. Sure, look up the meaning of your result online - but always be aware that it has to be looked at in a specific *context*.
Posted by renny1985 (Member # 25222) on :
you are 100% right camp other. I wish it was easier to find clear and non-controversial info on Lyme.
![[Frown]](frown.gif)
not sure what to do with myself