posted
Just posted this under a different thread but thought it would helpful to hear replies.
I think my lyme/bart was caught relatively early but with a CD57 of 48 maybe it spread pretty quickly since that is a low score.
At the time I did the Igenex testing I was actually not that symptomatic (i did the testing on a whim just to rule it out since I was searching for answers to a recent m/c).
I have felt a little off only since switching my antibiotics to include Ceftin, but doing OK overall.
So since we may not be able to measure my progress by symptoms is there anything other than my CD57 score that will help determine when it is time to stop antibiotics?
Posts: 376 | From New York | Registered: Jan 2011
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Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
48 is low. You'll want to wait to see if that goes higher before stopping. I think Dr. B says relapse is likely when CD-57 is low and treatment is halted.
Other than that, I'm assuming you remember what it feels like to be healthy, to be your old self.
I know I'm not there but if I do get there then I'll know when I can begin to "think" about stopping.
Generally, it has been recommended to wait a few months after lyme symptoms disappear before stopping treatment.
If I ever get to that point, I'd probably wait a lot longer just to be safe.
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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posted
Oh I forgot to say that my 2nd round of blood work that my score went up to a 60 which I know is very low. also. but a slight improvement. I will be having it re tested again this week after another full month of antibiotics...hopefully tomorrow.
I think it is going to be tough for me to go by symptoms. I felt better before antibiotics and now dealing w/ yeast issues because of the drugs that give me symptoms I didn't have before.
Just wondering if my CD57 should be in the 200's before stopping treatment or in another certain range? I can't go based on symptoms because I am dealing w/ side effects like the yeast that I did not have prior to treatment. I plan on being on meds for awhile but just wondered what other than symptoms people use to monitor their progress.
Posts: 376 | From New York | Registered: Jan 2011
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MichaelTampa
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posted
C4A, I think a measure of inflamation, may also show progress
Posts: 1927 | From se usa | Registered: Mar 2010
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posted
Thanks! I will ask about C4A!
Posts: 376 | From New York | Registered: Jan 2011
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ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
Our ILADS doc has a goal for us to be over 150 on the CD-57 and symptoms free for 2 months before stopping treatment. He keeps a symptoms chart and we rate each thing from 1-10. For my son we counted up the totals for each visits and slowly they are going down everytime we do it. Meaning the symptoms are improving. We could make a spreadsheet to compare if we wanted. We've been in treatment since this summer and only did the CD-57 initially. I think we might do it at the year anniversary. I hope you get better soon!
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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nefferdun
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posted
I was surprised when my LLMD, who developed the use of this test, said over 60 was in a normal range. I wonder if I misunderstood him.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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lululymemom
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Member # 26405
posted
Yes, normal range is 60-360 but I have heard LLMD's want it to be in the low 200's...
posted
C4a and C3a both of which were developed by Dr Shoemaker are considered good markers for Lyme. LabCorp in San Diego did my tests
Posts: 357 | From California | Registered: Jun 2010
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posted
Great info! I had read that if the score is in the lower end of normal (like 60) your chance for relapse is higher. I just had my CD57 test this morning so wondering if it will show continued improvement --hoping so! I will be asking my LLNP about the C4A and Thanks for the feedback!!
Posts: 376 | From New York | Registered: Jan 2011
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Hambone
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posted
Does it matter which lab does the C3a and C4a ?
I know the CD-57 is supposed to go through Labcorp.
Posts: 1142 | From South | Registered: Dec 2010
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jwall- I would say trouble is indicated by being in the high ranges since the normal ranges given for the tests start a zero. I wish I understood their significance better
Posts: 357 | From California | Registered: Jun 2010
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
My LLMD uses the C4a and the higher the number the worse the inflammation. The range will be shown on the results.
Mine was sent to Cambridge Biomedical in MA.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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