posted
Newbie here. Very glad to have discovered this discussion board. I'm pretty much home bound with fatigue, so having online support is great.
I recently started some antibiotic treatment and had what appears to have been a really bad herx. I've been generally tracking my energy by assigning each day a number 1-6. I need to keep more detailed info about what symptoms I have and how bad they are. Wondering if anyone has a method for doing this that works for you. As you all probably know, if it is too complicated, brain fog and fatigue can defeat the task. I have a list of the usual and unusual symptoms, but need a way to track them daily. All thoughts welcome.
Thanks!!
-------------------- no bite, fatigue for 30 yrs diag Feb '13 (maybe) homebound w/ fatigue Dec '11 Posts: 14 | From W Mass | Registered: Mar 2015
| IP: Logged |
lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
Hi catwoman...im from n e too. I remember years ago thinking about tracking sx....there are some ways and sites and maybe someone will come along with ideas
There are lists of sx...about 50 of them i think...and once i made a grid with the sx and the date and gave number value
Im a woman and the only sx i didnt have was testicular pain
Using the grid didnt last long...
I am better at identifying worst sx and when a tx or supplement improves the sx
So i can usually tell you how what i take affects certain sx
But with this disease things change so it gets complicated
My fatigue got much better after high dose abx tx...but that was 20 yrs ago...the bugs have changed...everyone responds differently
Now in sort of maintaining mode...i have found the supps that help me the most with fatigue are coq10 and nac
Im pretty sure the cause of my fatigue and exercise intolerance has to do with mitochondrial problem and glutathione....but i still dont really understand it.
At this point i just do the best i can
You sound like you are just starting this journey and they know a lot more now than when i started
If you look on this site for dr burrascanos guideline you will find sx list to print
One of the newest and best booksout now is "why cant i getbetter"
The book that helps me the most mentally and emotionally is "cure unknown"
Good luck and welcome
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
| IP: Logged |
posted
My method is not very thorough. I just write down my most notable symptoms on a calendar, adding as many arrows as I feel describes the intensity that day.
In the beginning it felt like I had all of my symptoms all of the time. I had most all of them too. As I progressed through antibiotic treatment I started getting clusters of symptoms, sometimes clusters overlap each other at different strengths.
I also keep track of when I start meds and certain supplements on the same calendar. This gives me an idea of what my treatment might be hitting and how it affects me.
Posts: 474 | From US | Registered: May 2014
| IP: Logged |
posted
If someone has posted about a Really Good System here, then there's hope. Shall we advertise? Send up flares? Maybe skywriting would help make the contact. ;-)
-------------------- no bite, fatigue for 30 yrs diag Feb '13 (maybe) homebound w/ fatigue Dec '11 Posts: 14 | From W Mass | Registered: Mar 2015
| IP: Logged |
posted
Steve, I checked out the TBI Journal. It looks promising, especially the different ways of seeing the data once it is entered and correlating meds and other treatments with symptoms. The first problem I encountered was their symptom options in the drop-down menus. I'm too wiped out to translate the severity ratings for fatigue and am struggling to put my descriptions into their three categories. It may be easier for other symptoms. I have my own system for tracking fatigue. Maybe I should focus on the other stuff. Too drained to try it now. cw
-------------------- no bite, fatigue for 30 yrs diag Feb '13 (maybe) homebound w/ fatigue Dec '11 Posts: 14 | From W Mass | Registered: Mar 2015
| IP: Logged |
posted
So what I need to do to make this online thing work is make a way to record stuff while away from the computer. Once I sit down at the computer, stuff leaves my brain like water thru a sieve.
-------------------- no bite, fatigue for 30 yrs diag Feb '13 (maybe) homebound w/ fatigue Dec '11 Posts: 14 | From W Mass | Registered: Mar 2015
| IP: Logged |
steve1906
Frequent Contributor (1K+ posts)
Member # 16206
posted
If you'd like to track your stmptoms when your not at your PC it sounds like you need an app on your Iphone.
Check-out this site below, I think it may help you.
posted
I used Excel charts and the graphs they generate to daily track protocol changes against symptom level.
For the chart, date tracks across the top, symptoms are listed down the left hand side. Data is recorded as symptom level (from 1 to 10) for each existing symptom on the list, charted once daily for each day of the month. I use bar-graph mode.
The bar graph will have symptoms level listed on the y-axis and date listed on the x-axis. You can make notations on protocol under the x-axis, but they are not recorded as part of the chart data. All you are actually charting is symptom(s) level against date.
-------------------- 13 yo DX PANS/Tourette's/Asperger's/ADHD treated for Igenex positive bartonella/IND lyme with 2 years of abx treatment. Weaned off abx April 2013 at 80% improvement. Continuing with Buhner bartonella/babesia protocols. Aug 2014 99% improvement. Posts: 265 | From Canada, Ontario | Registered: Jul 2013
| IP: Logged |
posted
If someone reading this has a TBI Journal, I need your help. I'm having problems with their forms and the only way to reach them is via their contact form on the web site. It keeps telling me "The SMTP server requires a secure connection or the client was not authenticated. The server response was: 5.5.1 Authentication Required. Learn more at" If you have a TBI Journal acct, could you PM me? thanks!
-------------------- no bite, fatigue for 30 yrs diag Feb '13 (maybe) homebound w/ fatigue Dec '11 Posts: 14 | From W Mass | Registered: Mar 2015
| 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!
![[Smile]](smile.gif)
Printer-friendly view of this topic