joalo
Frequent Contributor (1K+ posts)
Member # 12752
posted
I've been sick 23 years, misdiagnosed 21 years and in treatment with my llmd for 19 months.
I have lyme, ehrlichia, babesia, bartonella, CFS, coxsackie, Stari, Colorado tick fever, adenovirus, and echovirus.
I herx so badly on EVERYTHING that I have to stop taking it or back way off to practically nothing.
I'm so tired of being sick, herxing, feeling hopeless and crying.
Sometimes I don't know if it is all worth it. I don't know if there is any hope that I will ever get better.
I've started avoiding everyone because I don't want to ruin their day. Can someone like me ever get better??
Thanks!!
JoAnne
-------------------- Sick since January 1985. Misdiagnosed for 20 years. Tested CDC positive October 2005. Treating since April 2006. Posts: 3228 | From Somewhere west of the Mississippi | Registered: Aug 2007
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
You can get better.
I haven't been sick as long as you, but there are others on this board
Who have been sick longer and currently are without any symptoms.
Hang in there. Slow and steady wins this race.
Sending you Angels to sit with you.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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posted
dear joanne i have only just discovered this site and the people on here are fantastic so kind and helpful. within hours i recieved messages with names of doctors and information sites to be able to try and get help for my husband hang on and i feel sure that someone will be able to help and advise you too. take care kind regards emilyr
Posts: 8 | From west yorkshire england | Registered: Nov 2007
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
I can understand how you feel. I can't imagine being sick for 20 + years. Just think how tough and strong you have been over the 20+ years of being sick.
Please hang in there!
Thinking of you- Melissa
Posts: 3905 | From USA | Registered: May 2007
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Sure there's hope for all. Even those like yourself that have been ill with it for years. Look at Lymetoo and her 40(?-she must of been born with it) yrs being ill before she started real treatment.
Where are you Tutu? joalo is really can get better. Remission, cure, better days can and will happen once you get some correct treatment for a while.
Now this will not be tomorrow. Maybe the next day? I had to learn patience during my measly 7+ yrs, but I did learn to be more patient.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
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posted
Yes, I may have been born with it....but at the very least I believe I've had it since I was 8 and I'm about to turn 57 in January!
The key is a good LLMD!!
Has your dr tried the anti-virals yet? What meds have you taken??
You CAN get well! Do as many alternative things as you can in order to boost your immune system!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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joalo
Frequent Contributor (1K+ posts)
Member # 12752
posted
Geneal, emilyr, merrygirl and Pam - Thank you for the encouragement! It's nice to know you guys understand and care.
Tutu - I haven't tried any anti-virals yet. I've taken levaquin, omnicef, biaxin, ceftin and plaquenil. I've tried septra and tindimax but both made me herx so badly my llmd made me stop. I've also been pulsing artemisinin at very low doses because it causes serious herx reactions.
Do you consider yourself well? If so, how long did it take?
-------------------- Sick since January 1985. Misdiagnosed for 20 years. Tested CDC positive October 2005. Treating since April 2006. Posts: 3228 | From Somewhere west of the Mississippi | Registered: Aug 2007
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Yep, I've been sick for over 20 years, been treated for about 6 years now. I get the bad Herxes also but I just put up with it and keep it in my head that it will help. I get pain so bad I have to yell out loud, but I wait till my Wife goes to work before I do my yelling.
Hang in there, don't over do, when you Herx, back down on the meds but not for too long. The sooner you start to get used to them the better off you'll be.
Steve
Posts: 406 | From Rhode Island | Registered: May 2007
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joalo
Frequent Contributor (1K+ posts)
Member # 12752
posted
Thanks for your post MusicMan!
Have you been treating the entire six years or have you taken some long breaks? I ask because I'm curious how long it will take til i feel better. Are you still having bad herxes this far into treatment?
Thanks!
JoAnne
-------------------- Sick since January 1985. Misdiagnosed for 20 years. Tested CDC positive October 2005. Treating since April 2006. Posts: 3228 | From Somewhere west of the Mississippi | Registered: Aug 2007
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quote:Originally posted by joalo: Thanks for your post MusicMan!
Have you been treating the entire six years or have you taken some long breaks? I ask because I'm curious how long it will take til i feel better. Are you still having bad herxes this far into treatment?
Thanks!
JoAnne
Hi again Yes I have been treating the entire time or most of it anyhow. I have taken some long breaks, about 5 months twice now in the six years. When I take the long breaks is when I notice how much the ABX works, cause I go downhill fast.
Yep, sorry to say I still get bad Herxes but as time goes on it's easier to handle.
I'm up and down all the time and it changes constantly but everyone is different so hang in there, take it slow and don't get discouraged.
Steve
Posts: 406 | From Rhode Island | Registered: May 2007
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
YES*)!)*!! We've had numerous people in our local group with double decades of infection get significantly betetr and they have all been glad they did!!!!!!!!!!!!!!!!!!!!!!!!!!!
Hang in there!(_!! Best wishes, Sarah
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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posted
That is a long time to be sick. I have been sick since 1996 and mis dx'd almost that whole time.
You can't give up now though. You have battles over the last 20+ plus years to find out what is wrong with you.
Now that you know you can get better.
In a case like yours...and similiar to mine...my LLMD believes that slow and steady wins the race. He started me off on low doses of abx so my herxes weren't unbearable. They still aren't pleasant but they are survivable.
Don't give up now. Pull up some of that strength you have had for the last 2 decades.
Best wishes, kit
Posts: 655 | From Pennsylvania | Registered: Jul 2006
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posted
I have been sick for fifteen years, and I know it's hard to explain the cumulative emotions of being sick for so long and not being able to climb out of it.
Just remember, this brand of ENDURANCE is probably the toughest form of strength, and you've got it.
Day by day, it is very hard to see the big picture but you are working toward a goal and there will be setbacks.
I always think of that last scene in the Shawshank Redemption where the guy, after spending 20 years slowly, slowly digging himself out of prison for a crime he didn't commit, meets up with his prison buddy along a beautiful coast, and they are free.
That will be you one day -- free and living the life you desire. Sometimes these things take decades but that doesn't make them impossible.
Posts: 929 | From Massachusetts | Registered: Oct 2007
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I've been sick since I was a child, possibly even born with it. I'm 35 now and the last few years have been unbearable.
I started treatment in May of this year and I have already gotten rid of Babesia and Bartonella. My herxes aren't pleasant, but when I take a break for a while I can tell that I feel better than I have in years.
I have had many moments of discouragement and running out of hope...BUT, since treatment I decided to BELIEVE I would get better and to actually picture how I will feel and what I would do when I was better.
I don't know if that visualization and belief has helped me, but I know it definitely hasn't hurt!
Just keep believing and go one day or even one hour at a time...You'll get there!
-------------------- "Never underestimate the power of a few committed people to change the world. Indeed it is the only thing that ever has." --Margaret Mead Posts: 290 | From New York | Registered: May 2007
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bettyg
Unregistered
posted
wow, that was some tick to give you ALL THOSE ILLNESSES! so sorry to read that.
i've had chronic lyme 38 years this christmas! 34 yrs. MISDIAGNOSED by 40-50 drs/specialists.
abx 20 months; supplements 6 months making me worse
treating other tings wrong with me!
I'M NOT A QUITTER! thank you God for lymenet for educating me, giving me moral support, and helping me to find llmds as needed!
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