I was diagnosed in Jan '08 & was told by my primary don't worry we caught this early (bitten end of Oct '07). Given 2 months of doxy & then everything went south. I went 2 months untreated & declined fast. I finally found a lyme doctor who treated me w/ first biaxin & plaquenil and then just doxy (100mg 2x daily- for 5 months now). I have heard that although she treats lyme & is extremely supportive (overcoming lyme herself) she does not treat aggressively enough.....I now believe it...
I can now read Dr Bs guidelines & understand most of it, I've read Lyme Solution----my Dr told be not to worry/ question her approach to treatment & I was tested for all co-infections. I have made improvement since beginning her treatment but always believed that I have at least bart. It turns out I was not tested for all co-infections!!??
Fast forward
Last Friday I saw a highly recommended neurologist/ LLMD. He gave me 4 hours- the longest exam yet- and I guess luckily I was having a bad day w/ the symptoms. He follows Dr B's words, agrees that clinically I also have bart & will treat me for it regardless of the blood test, found it crazy that I have not had any blood work/ test since last June and agrees that my , now past dr, does not treat this aggressively at all.
I feel that I have wasted allot of time & could be feeling better then I am & I also may have allowed bacteria to take over more then they should. I have already changed my diet & work out per Dr B's guide.
The worse part of all this is I worked since I've been 13 to become an architect, buy a house, start a family. We had our first child 2/25/08. I have not been able to enjoy my child's first year of life. I'm also terrified to spread this to my wife through std & terrified to have a second child we always spoke of having- to spread it to this new life............
I wish I could give up- but deep down the type a, 110 mph, intense person I was is still in there & fighting to break out- I hope it is possible.............
Posted by merrygirl (Member # 12041) on :
IT is possible to get yourself back!
I am on my 3rd LLMD and I wasted a lot of time with docs who didnt treat aggressively. Once I found the right LLMD, I have pretty much been getting better since starting aggressive treatment. You will have to be a little patient though, you wont get better overnight, but it is possible! I never thought I would do so "well".
good luck and hang in there!
Melissa
Posted by DaveNJ (Member # 17362) on :
SMAN,
The exact things that are bringing you down are the same things that will help you crawl out of the hole of despair...yeh the timing sucks ...you have a newborn and i have my oldest as a freshman in High school....is either time a good time? no...
everthing worth having is worth fighting for..take the negative thoughts and realize its just the disease then when it gets you down you can get ****ed and keep fighting.
we always wish we could have it all..your daughter was born healthy thats a pretty good start and you are fighting something that can be beat as long as you don't beat yourself.
Forget about the time wasted...it is not in your control..any energy spent lamenting ( and i do once in a while also)is energy you don't have.
Keep the faith and show your family what a fighter you are. i am in my 7th month of treatment and refuse to let this beat me or suck my soul into the abyss...screw that...just not going to happen...you made it this far ...
Dave
Posted by Dekrator48 (Member # 18239) on :
sman,
Hi. I know it seems like you've wasted alot of time, but compared to alot of people, you are ahead of the game.
I had a "fibromyalgia" diagnosis for 21 years! I always knew the cause was infectious, although I thought it was purely viral.
I had to do my own research and diagnosis myself, then after I knew it was lyme, I sought out a LLMD.
I have only been treating for 6 weeks even though I've had this illness for 21 years.
There are many other stories just like mine.
You will get your life back. You've hit a bump in the road and now it's time to get back on track.
Think positively for your wife and child. You obviously have worked hard all your life, so this is no time to give up!
Read stories of people overcoming adversity to give you inspiration and hope. Pray.
It is wonderful that you have found a great neuro/LLMD. Try to see this as a blessing and not starting over, or wasting time.
If you can readjust your state of mind, it will help you in your recovery.
I am being patient after 21 years, so I know that you can do it too!!!!!!!!!!!!!!!!!!!
Posted by sman (Member # 15225) on :
you guys are the best......thank you in my moments of despair
Posted by Tracy9 (Member # 7521) on :
Please join us on www.lymefriends.com if you haven't already for another resource. It is like a social networking group for those with Lyme. It is a great place to check out in addition to Lymenet.
We also have Lyme Chat every night where you can chat live with lots of other Lyme Friends.
Posted by Lymetoo (Member # 743) on :
Many here went undiagnosed for years and years and years. There IS hope and you CAN get well!!
I would use protection in regard to your wife. You don't need the whole family to be infected. That really sucks.
Hang in there. You can win!! It sounds like you are now in good hands and will progress!
Posted by DaveNJ (Member # 17362) on :
SMAN,
anytime...next time you'll pick one of us up. I truly have adopted a mind set that when ever i ge donw i work harder. Because its not me or you that is donw its the BS in our systems. So whne they put up a fight i fight back.
Go to the gym, sweat, move , breath. if that sounds easy its not...but you go to do what you got to do...keep a pciture of yoru daughter front and center.....that is good motivation...
Dave
Posted by Meg (Member # 22) on :
sman, We've all been there! All I can say is now you're in good hands, and let the healing begin.
Don't ever stay with a Dr that isn't treating you aggressively, and remember there are a few excellent Drs in Ct.
Posted by bettyg (Member # 6147) on :
quote:Originally posted by sman:
Last Friday I saw a highly recommended neurologist/ LLMD. He gave me 4 hours- the longest exam yet- and I guess luckily I was having a bad day w/ the symptoms.
He follows Dr B's words, agrees that clinically I also have bart & will treat me for it regardless of the blood test, found it crazy that I have not had any blood work/ test since last June and agrees that my , now past dr, does not treat this aggressively at all.
I feel that I have wasted allot of time & could be feeling better then I am & I also may have allowed bacteria to take over more then they should. I have already changed my diet & work out per Dr B's guide.
The worse part of all this is I worked since I've been 13 to become an architect, buy a house, start a family.
We had our first child 2/25/08. I have not been able to enjoy my child's first year of life. I'm also terrified to spread this to my wife through std & terrified to have a second child we always spoke of having- to spread it to this new life............
I wish I could give up- but deep down the type a, 110 mph, intense person I was is still in there & fighting to break out- I hope it is possible
yes, been there; done that! 39 yrs. chronic lyme; 34.5 yrs. MISDIAGNOSED by 40-50 drs.
had 2 llmds; no significant progress on either and 2nd one really created chronic fatigue problems that were NOT this bad prior.
so you've got a baby; looks like you lucked out on diaper duty. but seriously, once you LICK THIS THING; you/child will be making DAILY MEMORIES to last a lifetime.
time to develop a TYPE B attitude; let your guard down and do NOT BE A PERFECTIONIST; it's not worth it.
learn what you can live with where you have done your best, but not let it dwell on you that it's NOT as good as before lyme.
hang in there with us; we'll help you since we walk the walk daily, and have reasonable rates! lol Posted by sman (Member # 15225) on :
Again- you guys are the best. Thank God I have someone I can connect w/ & understand the hell we go through.
I'm having another ``bad day''- I'm just stressed about starting w/ a new Dr & dropping the old one- and giving 23 vials of blood yesterday may have something to do with it.
Posted by Lymetoo (Member # 743) on :
Yeah, 23 vials would totally wear me out!
Hang in there!!
Posted by bettyg (Member # 6147) on :
sman, but think of it this way; 23 vials; something will show up SHOWING SOMETHING W/DEFINITE DIAGNOSIS; then you will know what you are dealing with. Posted by jt345 (Member # 19638) on :
Hi
Listen too these people here. They all know the life all too well. When I read your post it was like looking into a mirror. But I think most of the people here could say that. A very wise man once told me the rabit dose not win this race the turtle will. I have had this since 1988,there has been ups and downs . But focus on life,be as well as You can be every day,and don't beat yourself up for getting sick(that my friend is easy to do when You have lyme) There is years of expereince here,and a safe place. feel free too drop me a line .You've got a friend. jt543(the original appleseed)
Posted by Meg (Member # 22) on :
sman, bottom of my post: The Success Stories (I still read them!)
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