posted
I believe we will all be cured. I know some folks just get better, but stick with being fully cured for the moment.
Alot of friends and family ask me the question, How do you know when you are cured from Lyme?
Based on my "internet" research, this is what I think are possible answers
- Igenex testing with no IGM markers? - Symptom free for 3 months after taking a cyst buster medication - or simply symptom free witouth abx - cd 57 above 200.
I am no where there, just curious as to what folks use as a measurement to know that they have cured this awful disease
-------------------- Dx 3/2008 Pos. WB and Bart- igenex Levequin 500 mg March 2008 Amox 6000 mg - May 2008 Doxy 400 mg - June - oct Biaxin and Flagly 1000 each, oct-dec Zitro, Malarone and Flagly Jan - feb Remission for 6 months Relapse Sept 2009 zithro/flagyl Posts: 130 | From canada | Registered: Mar 2008
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Hopefully there are still a few people who visit this website in spite of considering themselves cured. Maybe they can provide some insight.
Posts: 129 | From Virginia | Registered: Feb 2008
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Angelica
Unregistered
posted
Maybe when your LLMD tells you to return in a year rather then two to three months.
I am not so sure if I would go by a CD57 test.
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gemofnj
Frequent Contributor (1K+ posts)
Member # 15551
posted
My doctor says you can stop medication 2 months after symptom free. Not sure if that means "cured."
My CD57 test last month was a 45 and I feel 95% symptom free. If new symptoms start appearing I could have coinfections.
I tested negative on all, and it is possible to just have lyme. That would be great.
Anxious to see what she does to me at my next Dr. appt.
What's really strange is that some people feel better even tho their CD levels are low.
And then there are those that are really sick and are low. Those that are normal or high are to assume they are fighting coinfections, and perhaps not only lyme.
My understanding is that you have to continue treatment until your level reaches 100 or you will certainly relapse.
So I guess even if you are symptom free, and your cd levels are not there, then you have to continue on abx??
Maybe cured means a combination of both. Sure is complicated!!
Posts: 1127 | From atlantic city, nj | Registered: May 2008
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Angelica
Unregistered
posted
Many LLMDs go by symptoms and not the CD57 which in my mind is a giant waste of money and does not mean much.
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posted
I've always known that I will be cured when I can drink again.
Of coarse, treatment must continue for quite some time after resolution of symptoms...but I will be way too happy that I have my life back again to care about much else.
Posts: 269 | From Valencia, CA | Registered: Aug 2007
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posted
My lyme nurse says two months symptom free. I've never tested high on the CD-57,at my sickest point (two years ago) I was a 32.
The better I got the lower the score. I even tested a 2 about 9 months ago.
I don't think I'll even take the test again as I've heard the jury is still out on it's validity.
I'm 90% better after two full years of antibiotics. The last 11 months I spent on Rocephin IV.
With the testing so poor for lyme and coinfections I don't put a lot of weight on the CD-57 test, especially when I defied the very reasoning that the better you feel the higher the CD-57 number.
Barb
Posts: 281 | From san francisco | Registered: Jun 2006
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
I'll be satisfied with symptom free; for longer than 3 months, with no abx.
Failing that, I will be satisfied with symptom free while on low-dose maintenance abx.
Posts: 2557 | From home | Registered: Aug 2006
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