posted
My story like so many others is that I self Diagnosed my lyme disease thru my research of the internet. So now, I have in my mind placed a considerable amount of value associated with having knowledge.
In my case, the medical profession said it was stress and arthitis. If I accepted that dx along with my normal ELisa test, I would have detoriated with chronic lyme symptoms.
My issue now is that I have become obsessive with trying to find the latest and greatest lyme treatments. I am spending approx 2 to 3 hours a day researching lyme treatments. This is after putting in a 9 hour day, so effectively it is most of my " free" time.
Do other's do the same? I know the benefit of getting on with life, so how do I break this compulsive behaviour.
-------------------- Dx 3/2008 Pos. WB and Bart- igenex Levequin 500 mg March 2008 Amox 6000 mg - May 2008 Doxy 400 mg - June - oct Biaxin and Flagly 1000 each, oct-dec Zitro, Malarone and Flagly Jan - feb Remission for 6 months Relapse Sept 2009 zithro/flagyl Posts: 130 | From canada | Registered: Mar 2008
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Diagnosed April 29, 2007. Posts: 136 | From Joplin, MO | Registered: Apr 2007
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
You asked - do others do the same thing?
I can't speak for others but I have spent way beyond 3 hours a day learning about lyme over a number of years.
I personally think this is normal for some people and frankly I don't feel it is a bad thing up to a point.
Knowledge is power and since our quality of life and (not to be too dramatic but) our very life is at stake then we have to know as much as we can so we can make good decisions.
I think most people slow down on the research once they are making progress and are satisfied with their level of knowledge.
I personally don't feel a need to force myself to stop doing what I feel is necessary for my survival. That said, I am learning about other aspects of my health (methylation cycle issues) since that is a big part of why it is taking me so long to see progress.
I still spend a fair amount keeping an eye on what is happening in the lyme world because I am still really sick after 2 years of treatment and all of my siblings are sick as well.
My big fear is that my brain will deteriorate so I am researching and keeping detailed notes now, while my brain is still functioning relatively well.
I won't stop being obsessive until I feel well enough to live a reasonably normal life and I can help my siblings feel better too.
If you want to spend less time learning about lyme, try finding something else that you enjoy doing. Break the pattern. Stay off the computer or start researching something else that you find fascinating.
edited to add: You may also consider examining the reasons that you feel you are obsessed so that you can work through those feelings and either decide that it's OK that you are obsessed for now or resolve the feelings that are driving your obsession.
Terry
[ 12. August 2008, 07:02 PM: Message edited by: TerryK ]
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
Progress to this disease has become stagnant, in the medical profession. Until things change, I will continue gaining as much knowledge as possible, I don't think for now I have much choice.
This disease is Globally on the increase, it is not Mass Hysteria, the time will come when it will have to be taken more seriously.
Meanwhile I arm myself with as much knowledge as possible from the wonderful people on this forum, at the moment, it seems to be the only way.
To me, this is not an ignorance is bliss situation.
Posts: 153 | From England | Registered: Jun 2008
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Clarissa
Frequent Contributor (1K+ posts)
Member # 4715
posted
I think it's totally normal and I feel that knowledge is power.
Go easy on yourself.
If this is still happening a year from now, let's talk!
posted
Thanks, all of you have brought up some good points.
I am making progress, however not ready to throw a parade yet. So I will continue to learn more about how to eradicate this bug.
Thanks to all, we will win. Stay positive everyone.
-------------------- Dx 3/2008 Pos. WB and Bart- igenex Levequin 500 mg March 2008 Amox 6000 mg - May 2008 Doxy 400 mg - June - oct Biaxin and Flagly 1000 each, oct-dec Zitro, Malarone and Flagly Jan - feb Remission for 6 months Relapse Sept 2009 zithro/flagyl Posts: 130 | From canada | Registered: Mar 2008
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Alv
Unregistered
posted
KNOWLEDGE is the POWER!
You spent 3 hrs a day .How about 20 hrs in 7 days..NO kidding.I was dying and I was determenied to find out that I was not making up my seizueres , fainting , chocking to death , tachiocardia , loos of hearing loss of balance..and I knew I had a monster in my body!
It took me 2 years , analizing my lab works ..collected my entire file for the last 5 years ..jot down everything and checked eveyr symtoms against my blood works that WAS SCREWED up for at least 4 years.
NOUROLYME and on top of that the challenge to learn all in ENGLISH! Juts had moved to USA and GOT sick to death.Can you imagine.
I learned and learn and nothing was a waste.At thye end you are the doctor on your own body .LLMD just fill me in .
So never never consider posession.It will come a time that you will grasp most of the information..and that little new coming out you will grasp easily .YES we all want to know all the treatment and adjust it to the best ways based on our financial abilities and what is doable. Than it comes a time that you see new people that are very sick and they have a NEUROLYME sufering for years and they just can not finish a sentence like I could not last year THANKS TO THE FULL BLOWN ENCHEPHALITIS.
MY brain could not fit in.IT WAS EXSPLODING !!!!
I ihad no room on my neck or frontal lobe...nowhere...could not see 1 foot away!
THAN you jump to help them out.I think this is not obsesion.People are there out to help you understand than it is your time to gives something back.
It is all the learning process and growing.IF you did not have lyme you would never be able to do that!
people that are healthy will never understand it.
THEY JUST DO NOT CARE.UNTIL IT HITS THEM!!! NO I do not call obsession.I call it FREAK CONTROL.I am .I want to be in control of my life.I hate the unknown.
So that is what I do .TRY TO DO THE BEST to take control of my life back when lyme stole it from me and it was invisible to me.
posted
i know exactly what you mean: how much research is too much? my family sometimes urges me to stay away from the computer and sometimes they might be right.
for me researching now, after 7 years of lyme, is a bit frustrating cos normally i research until i find a solution. but with this disease there is so little information that it always ends up in a one-way-street.
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