posted
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.
Posts: 331 | From virginia | Registered: Nov 2005
| IP: Logged |
Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
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
Posts: 3193 | From Northern California | Registered: Apr 2005
| IP: Logged |
posted
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?
Posts: 559 | From Cary, NC | Registered: May 2006
| IP: Logged |
Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
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.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
| IP: Logged |
groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
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--
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
| IP: Logged |
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.
Posts: 331 | From virginia | Registered: Nov 2005
| IP: Logged |
Mathias
Frequent Contributor (1K+ posts)
Member # 5298
posted
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.
-------------------- Mathias Posts: 1242 | From New Jersey | Registered: Feb 2004
| IP: Logged |
Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
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
Posts: 2549 | From never never land | Registered: May 2005
| IP: Logged |
Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
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.
-Aniek
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[hi]](graemlins/hi.gif)
Printer-friendly view of this topic