Okay guys, I have been on abx for almost six months now and I really am unsure whether I am seeing improvement. How have your LLMDs measured whether or not you are getting better?
I have an appointment with my doc on Monday and I really want to discuss whether I am improving or not, but don't know how to approach it. I do not want to continue abx if it is doing more harm than good or doing no good. ugh.
Posted by Michelle M (Member # 7200) on :
That's about the time my LLMD started me on cyst busters, i.e., Flagyl. OUCH. Which hurt, but helped.
So it was actually AFTER six months that things started looking up.
A diary was enormously helpful throughout the first year; even if it was just a few entries a week.
Co-infections are sometimes holding us back from improvement -- in my case, babesia was the holdup. I hadn't tested for it and finally did and was positive. Adding treatment was the difference between night and day.
I naively planned to be "all better" in six months when I started treatment. HA! Didn't quite work out that way. But now I'm thinking I'm much wiser, on top of my co-infections, and making really good progress. I'm at one year. I see light!
Look for milestones, however tiny. Keep a diary. Address co-infections -- treat babesia even if negative.
Michelle
Posted by LYMESCIENCE (Member # 9259) on :
Va chick, sorry things aren't seeming to work out for ya?
Quick question, did you EVER see an improvement, only to repalse on a different combo of drugs?
For example, while taking Primaxin, did you seem to get a bit better, even if you had herxed? Then later on, things were kinda up and down with seemingly no discerable pattern, at least that you percieved that is?
Posted by Aniek (Member # 5374) on :
To began, it took more than six months for me to see an improvement. For many people, it takes over a year.
The improvements depend on what your symptoms are.
My LLMD always checks my joints, and notes when the cracking has improved. She also checks to see if certain joints are unstable, and has noted when my hips got more stable. She does this by moving the joints.
She tests the nerves in my feet with a metal vibrating fork and notes how long I feel the vibrations.
She always has me rank my pain and fatigue at each visit. Average, worst and best days.
She goes through a large list of symptoms to check, she has you check them off before hand and asks specific questions.
She also goes by the visual. I had no idea, but I looked sick when I started treatment. My LLMD is not the only person who noticed a difference. I went home for a holiday and family and friends told my mom how healthy I looked. That alone was a sign I was getting better.
Posted by groovy2 (Member # 6304) on :
Hi VA
Progress can be slow in coming-
My first sign lasted about 5 minutes- 8 months into treatment
The crud feeling lifted for just 5 minutes but I still remember the moment perfectily--
This good feeling was very fleeting at first but now I mostly feel good--
You can make it ==Jay--
Posted by vachick (Member # 8353) on :
Thanks guys.
My new husband claims that my myoclonic jerking has improved by at least 50%, and I would agree that it has gotten better. I don't bit my tongue or cheek as much as I did either.
My fatigue is a bit better as well.
My stomach issues, however, are up and down. I have constant burning pain in my upper right abdominal area...it never stops and goes into my back.
My biggest problems seem to be the pain in my right hip, back and leg.
My doctor has me fill out a lengthy symptom list and rate them to measure my progress, but that is all. Has anyone's doc redone the CD57 test to measure progress? My CD57 was like 26 eight months ago.
Posted by Mathias (Member # 5298) on :
A daily symptom flow sheet was effective for me. Just a table of symptoms with a 1-10 scale of severity for each. Great for narrowing down problem areas for discussion with the LLMD during appointments.
Posted by Andie333 (Member # 7370) on :
I agree with Mathais here, that recording my symptoms at the end of each day has been really helpful -- for me and for my LLMD.
I've been doing this since before I first saw my LLMD in June 2005.
Andie
Posted by Aniek (Member # 5374) on :
vachick,
Have you spoken to your doctor about the abodminal pain?
I have right abdominal pain that we believe is chronic pancreatitis. This could also be the sign of problems with the gallbladder. Both of them you want to get checked out.
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