Topic: In treatment 1 year, feel better, recent testing indicates I am worse!
lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
Hi, I just really don't believe this, I mean I really don't!
About a month ago I got some good news and have been told my Bart is gone.
I have been in treatment for one year for LD/co-infections and viral co-infections. I was 5% of normal last year at this time, I believed I was dying and was sure I would.
I feel now I am about 60% of normal now with days that feel 90% or normal.
I just received today test results, they show my 3 active viruses are WORSE and my CD57 has dropped in 1/2.
This really scares me, these viruses can lead to MS and even luekemia, they scare me more than the LD.
How can this be possible? It literally means I am worse off than I was a year ago, but how can this be possible? I know I have improved and absolutely was floored by these results.
Can anyone explain this? I am confused and have been very upset and crying since getting these results today.
posted
I personally would not put so much stock in testing. Really.
You went from 5% normal to 60% and 90% on good days. That means everything!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96227 | From Texas | Registered: Feb 2001
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
Good point Lymetoo. It is possible the tests are just wrong. I mean it seems every test is unreliable from LD to H.pylori, why not these too? Thanks - you made a good point.
I am not finding that test to mean much in my world or what my first LLMD told me about my CD57 results - so there you have it my 2 cents on the subject.
Just keep feeling better and forget those tests and anything else attached to the CD57.
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butchieboo
Unregistered
posted
tests are pests...
If you're feeling good make a CLINICAL diagnosis about your prognosis and determine that you're BETTER!
Cuz hey...feeling better is what's REALLY important!
luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
What meds were you taking to get rid of viruses?
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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posted
I agree.... place stock in how you are feeling And you are feeling so much better,
ps (enjoy this weekend...put this on the back burner for now) YOU WILL make it through this.
You have brought me to where I am right now...you have "talked me down" so to speak... because you have been so strong you have shown me....
Posts: 151 | From ohio | Registered: May 2007
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
CD57 was invented by Doc S the current pres of ILADS.
It didn't work for me as a marker AT ALL and that doc, my angel, saved my life.
It DID however work dramtically as a marker for my daughter.
I would go by how you feel!*)!*)!*!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Is the virus test an antibody test? Lyme suppresses the immune system. If you strengthen the immune system, maybe your body is starting to build antibodies to the viruses.
That at least explains the virus side of the tests.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
Hi, I want to comment to each of you individually - thanks for making me feel better about this and make some sense of it.
Lymetoo - good point. thanks
Luvs2ride - I have been on Valtrex for quite awhile for the active viruses. I also have some pretty specific immune system boosting natural things I take as well.
Vanillia - got your point, I know what you are saying.
Jaime - you are a sweetie and just adore you, here you are in agony consoling me. Thanks.
Aniek- I am not sure if it was an antibody test. But I have actually had other's tell me that if the LD gets under control the viruses go dormant. I thought by now the LD was under control, but apparently not..
butchieboo- gotta love that attitude, made me smile thanks - you are right!
Californialyme - yeah the CD57 doesn't seem to be so universally correct for everyone -- I just am learning not to put too much into this test anymore - or any test for that matter.
bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
I'd say congratulations are in order!
If you are feeling better, but tests look worse, then my hunch would be that your immune system is responding in a big way to the infections.
Many lyme and coinfections come back negative or normal before treatment, and then show up
positive after people have been in treatment for several few months. The great thing is that
apparently your body is recognizing the infections enough to activiate your immune system against them!
I've read whatever I can on the CD-57, and have come to the conclusion that it is a marker
to help in making decisions about treatment, within a context of symptoms and other tests.
It doesn't seem to prove or disprove illness or degree of illness.
I'm glad you are feeling better!
bejoy
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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Vanilla
Unregistered
posted
Well I knew for sure you would get my point but you might be the only one who did.
Good thing my CD57 is high it must mean I have a great immune system when it comes to Lyme - WRONG!
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Vanilla
Unregistered
posted
The best revenge on the keets and over priced tests is feeling good.
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
Ha!ha! I hear that! I am not wasting time on testing anymore, I mean isn't this all suppose to be a clinical diagnosis anyway, based on how we feel?
I am not "great" by any means, but much better than a year ago and seems impossible these tests could turn out worse than then.
I think I am done with tests...really, I don't want anymore, especially the cd57, that test makes no sense I don't think to many. Borrellia specific, tick borne specific, there are people sick with high cd57's and people who probably feel good with low cd57's, are there? Is there anyone that has a low cd57 and feel good? Mine is low and I feel better now than when it was normal!!
quote:Originally posted by lymebytes: I think I am done with tests...really, I don't want anymore, especially the cd57, that test makes no sense I don't think to many.
Borrellia specific, tick borne specific, there are people sick with high cd57's and people who probably feel good with low cd57's, are there? Is there anyone that has a low cd57 and feel good?
In answer to your question: YES!! Look in the archives. Just do a search under CD57 and you'll find plenty of cases where the test makes no sense whatsoever.
If it makes you feel any better about not taking this test again..... I've never even taken that test...ever. Don't think I ever will either. What for??
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96227 | From Texas | Registered: Feb 2001
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Beverly
Frequent Contributor (5K+ posts)
Member # 1271
posted
I recently had a CD-57 test and it was a 3. Funny thing is, I feel better today than I have in a very long time, so I agree with everyone above, it's all about how you feel.
Posts: 6639 | From Michigan | Registered: Jun 2001
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D Bergy
Frequent Contributor (1K+ posts)
Member # 9984
posted
If these are antibody tests then it just means your immune system is active in fighting them. If the tests find the actual virus (probably not)then that may not be a good indicator.
D Bergy
Posts: 2919 | From Minnesota | Registered: Aug 2006
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