posted
I have been to many well-known LLMD's who repeatedly say they base improvement or relapses based on clinical presentations more than the CD57. They say it is a good initial indicator, but it cannot be depended on to track progress. It can be a very deceptive level.
Sounds like neuro-lyme (Bart?). How long have you been sick? How long was your treatment course? IV's are good for neuro things.
-------------------- You name it, I've got it. Full-time medical anomaly. Posts: 432 | From Southeast | Registered: Aug 2011
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
To find out if you have relapsed after stopping treatment, my lyme doc does an antibiotic challenge. Then, tests the urine to see if any dead lyme is found in it.
You take a short round of antibiotics known to kill lyme. Then, using a test kit, you test your first morning's urine for a number of days. You send that off to the lab and they report what they have found.
I believe the test is called the LUAT (lyme urine antigen test).
That's what my lyme doc did on me 6 years ago when I was afraid I was relapsing. It was negative for lyme.
I got rid of lyme over 7 years ago.
My doctor told me signs to look for that indicate a relapse. One was migrating pains, meaning first this hurts, then that hurts, etc.
Also, look for a 4 week cycle of symptoms getting worse (the waxing and waning of lyme symptoms every 4 weeks).
If you have relapsed, you don't necessarily need IV treatment. You may just need to go back on oral treatment.
For example, if you failed to treat/adequately treat a coinfection, then you have to go back and treat it. You will also have to treat lyme again, but likely just for a short period of time.
If you follow the Burrascano Guidelines, then you should be doing one hour of weightlifting every other day. This boosts your immune system and goes a long way to preventing a relapse. I believe this was key in my recovery.
"LYME DISEASE REHABILITATION
Despite antibiotic treatments, patients will NOT return to normal unless they exercise, so therefore an aggressive rehab program is absolutely necessary. It is a fact that a properly executed exercise program can actually go beyond the antibiotics in helping to clear the symptoms and to maintain a remission." (page 31)
Also, I would not drink or smoke as these weaken the immune system so that it cannot keep lyme under control.
Finally, you may want to compare your treatment to the Burrascano Guidelines. If you doc didn't treat you for the cyst form of lyme, or if your dosages do not compare favorably to what Burrascano requires (too low of a dose, in other words), or if the coinfections were not all addressed, then you likely relapsed because of inadequate lyme treatment.
You can be on years of high dose antibiotics and still be on inadequate lyme treatment. That was the case with me.
The time I thought I was relapsing, it turned out to be menopause instead. Hope it turns out that it is not lyme in your case also.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
It is not me having the relapse, a friend. He became symptomatic about 7 years ago, was diagnosed and started treatment about 6 years ago. Was on many different antibiotic combos, and did some IV rocephin treatments, along with supplement/herbs.
Have not heard of the LUAT, but will suggest that he speak to his LLMD about it. Will also review the Dr. B. guidelines. Drinking and smoking given up years ago!
It�s hard to rely on most lyme testing, and seems important to go back to relying on clinical picture.
Also looking at testing hormonal levels and neurotransmitters. There is a newer test out by Pharmasan Labs, Inc. It tests levels of neurotransmitters such as serotonin, GABA, Dopamine, Glutamate, Epinephrine, and others to determine if there are insufficient levels playing a role in his symptoms.
Thanks for your support.
Posts: 873 | From WA | Registered: Dec 2005
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CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
Thanks, good info.
Posts: 1954 | From Illinois | Registered: Aug 2007
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