My LLMD says that he has successfully treated thousands of patients. Encouraging.
Dr. Zhangs book states that in 6 months their patients get their symptoms under control. They also show off 4 "typical" stories. Encouraging.
Reading this discussion group is NOT consistent with the above claims of success. Granted, people who feel bad are more likely to post. People who get better walk away from this nightmare and get back to their lives.
So what is the actual success rate? What is the percentage of success stories in this board?
Would it be beneficial for us to keep online diaries accessible to everyone where they summarize each day in a simple questionnarie on a scale from 1 to 10 (parameters like fog, joint pain, memory, etc)? After a year of such data collection we could see how the disease progresses in real time and how it responds to treatment.
After all, we are all experimenting... with our own bodies. Documenting these experiments in a quantitative manner could be beneficial to everyone.
Posted by MariaA (Member # 9128) on :
Everyone I know who's gotten over Lyme isn't getting online to talk about it- because they've moved on, or they got good health care to begin with and don't feel the need to vent about bad experiences with ducks, or they just haven't had any questions to ask.
It's the 'hard cases' that are more likely to be on here doing research and finding people to compare experiences with.
Posted by grace1 (Member # 10347) on :
^ hi maria, what would you estimate is the percentage of people who have gotten over lyme and moved on? and how long did it take them to get over it? do they relapse?
do you see any trends of what characteristics the people who are able to get over it have?
it's good to hear that people move on. it's understandable too that people don't want to talk about it. it's such a traumatic experience that maybe people just don't want to deal with it if they don't have to.
Posted by MariaA (Member # 9128) on :
I know at least four.
I'd say that of those:
-one (who caught it immediately AND took well to the short treatment) is 100% normal (dad's a duck and made sure he got treated immediately while in the first few weeks of initial Lyme infection) timeline: been well for 4 years probably?
-one (who has a high-stress, high-pollution life as an auto mechanic, does drugs and drinks, lives in his mechanic shop among greasy auto parts and has hydrocarbon poisoning or something like that) isn't quite normal but was a really tough case requiring a few years of treatment and a lot of supplements. He of course hasn't taken care of himself in years. He wasn't a partier (nor did he live in his shop) when he had Lyme by the way, so that's not a factor in him not getting 100% well.
timeline: extremely disabled many years ago, treated for 1-2 years (?), been 'well' for at least 5-6 years, definitely has residual clumsiness from neuro symptoms not quite going away, but has a lot of other issues not related to Lyme
-one 'isn't quite sure' that she's completely over it, but is functional enough to not pursue the matter further (she works a very physical job and is a martial arts practitioner and has no problem with both). Timeline- sick two or three years ago, treated 6 months later for a short while, still not long enough to know
-one who was very sick for 6 years and seems fine after 7 or 8 months of antibiotics and Buhner herbs. Stopped taking both after this time, seems almost 100% normal four months later (which is too short to say, I know), thinks that her remaining minor tiredness is just from being extremely out of shape (she's an ex-athlete and knows what this means) and starting a very stressful new lifestyle, currently getting bloodwork done to see where her thyroid (affected by Lyme) and Lyme stuff is at. Anyone know a good LLMD near Amherst Mass (PM me please)?
Posted by MariaA (Member # 9128) on :
I can't think of anything these folks had in common, by the way.
Maria
Posted by MariaA (Member # 9128) on :
Never mind- here's common factors:
- they're all in their 30's - two or three of them took supplements (I'm not sure about the first guy, pretty sure about the others), and did at least some Chinese herbs and accupuncture at one point - weren't sick for decades and decades like some of the folks on this forum -weren't infected as children
Posted by Parisa (Member # 10526) on :
I think it would be fair to say that when people get better they probably just move on. My son is dyslexic and I spent quite a bit of time off and on on some boards.
Once things started getting better I had other fires to put out and stopped visiting those boards.
I had just been thinking recently that I needed to go back and post a success story to encourage others.
Posted by runcyclexcski (Member # 10749) on :
Yes, just as I expected. People who get better just move on and don't bother reporting their stories.
I happen to be user number 10-thousand something in this forum. What are the stories of the 10,000 folks who joined before me?
If the administrators could email everyone and ask how they are doing right now, compared to how they felt just when they joined, that would be a limited, but a valuable piece of info (and with 10,000 points - that's great statistics, too!)
[ 11. February 2007, 02:55 AM: Message edited by: runcyclexcski ]
Posted by bettyg (Member # 6147) on :
run, yep, i checked your profile; you're a scientist so statistics are very important to you workwise and personally now with lyme.
for some success stories, go to general; at top they are posted.
some post they are doing well and leaving. majority cut the apron string to MOVE ON with their new non-lyme life..
some come back on rare occasions to check in saying how they are and asking others how they are doing.
i do not see the moderators doing this. we only get group mailings for the annual fund-raising to keep lymement going.
if you folks have not contributed, go to the left hand side for details ok. Posted by grace1 (Member # 10347) on :
hi maria, thank you for taking the time to describe the stories of the people you know who have gotten well. every little bit of hope helps!
Posted by Andie333 (Member # 7370) on :
I was infected in 1996 but not dx until 2004. I was so sick at the time of dx that I feared I would be unable to walk. I had seizures, paralysis, excruciating pain, etc. and would have ranked my overall state of health at about 18% of normal.
A number of people around me subsequently confessed they were really scared that I was going to die at the hands of this disease.
I've now been in treatment for 19 months and feel I'm at about 80 to 85% of normal. A month ago, I started back to work fulltime.
I'm still on abx, continue to get weekly acupuncture treatments, have an ongoing regimen of vitamins, herbs and Chinese medicines.
I'm hoping to continue healing, but I'm really grateful for the success I've had so-far.
Among others I know:
One was treated almost immediately with IV abx for three months. That was about 6 years ago. He's felt good, but just recently, he's experienced some problems with bones in his feet and has had to undergo several nasty surgeries. He fears that's all Lyme-related.
Two women friends of mine were the first I ever knew who had Lyme. They both had nasty cases that put them out of commission for awhile. Both, too, were given IV abx for about a year.
They got their lives back, and now, about 10 years later, both are experiencing milder symptoms of relapse and have started taking abx again.
Another, a teenager, was also dx quickly. He had 2 months of oral abx and now leads a very active life but sometimes complains about joint pains.
Andie
Posted by SForsgren (Member # 7686) on :
Yes, sadly, I think that if the infection has been present longer than a month, the chances of it recurring are very real even after successful treatment. I do believe we can become asymptomatic, but I do not think that "cure" or total elimination is likely after the very very early stages.
I think that positive attitude and low stress are critical and these are areas that I don't always do well with.
As much as I learn from being here on Lymenet, I think even forums such as this can link us to the consensus reality that this is a very difficult disease and at times, it is better not to spend so much time wrapped up in Lyme. I do exactly what I am suggesting not to in saying this. Research is power and should be done, but I think there is a point where it is not healthy. Some people seem to spend so much of their time here on the board and I don't think that is healing. Go to a movie. Talk a walk. Enjoy life.
Posted by Vanilla (Member # 11155) on :
My LLMD says 70% of people recover but he thinks it important to work on emotional past for patients to ever recover. Who knows?
I have read 60% recover some other place online. I sure wish we had more answers and research.
I know high stress makes my LD worse but having LD is stressful at least for me.
![[Wink]](wink.gif)