I am sorry to be such a downer, but I really don't want to live if I have to live like this.
The only thing that keeps me going is I keep hoping I will get better.
maybe I need more pain meds again.
I have been on treatment since august, (doxy, rifampin/zithro, now biaxin rifampin doxy) and definitely better than I was. I was dying, now I am stable.
i know many of you have been there.
Posts: 615 | From maryland | Registered: Oct 2007
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bettyg
Unregistered
posted
ro,
i'm sorry to say it gets much, like hitting the bottom before we crawl out of holes after kicking the chetes butts all over our bodies!
this is where we LEARN PATIENT! i too am not a patient person but this illness will take you from extreme to the other.
any day that you have a good day, cherish each minute, hour, and the day while it lasts. REMEMBER how you felt during this; write it down to remind you of what you did, etc. to enjoy it.
i use member KAM as my inspiration of everything she has had to overcome to get to where she is this year! read her heart-wrenching stories in support.
READ SUCCESS STORIES IN SUPPORT up at the top.
feeling miserable and need some cheering up, look for LYMETOO/TUTU's post on NEEDING LAUGHTER where I/she/others have over 200 things to laugh at!
put on a comedy video or watch TCM, AMC, plex, or any of the old movies on cable!
best wishes; RO, better days are coming; just NOT SOON enough for us. you're NOT WALKING ALONE; WE ARE WALKING BESIDE YOU!
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
NO way is that as good as it gets! NO WAY!!!! it takes TIME!! And Antibiotics- I wish it was quick but it's not.
The one guy in our group who comitted suicide had just been in treatment 6 months and with a NON-LLMD- she put him on IV Vancomycin and told him that vancomycin cures ANYTHING and he would be fine- well, of course IV vancomycin is not the drug for Lyme, IV Rocephin is!!! No improvment!! The MD was a local oncologist who diagnosed him herself. ANYWAY, he killed himself because he was convinced that if 6 months of IV vancomycin hadn't saved him, nothing would! yet we could all have told him IV vanco wasn't the way the go!!! and 6 months after he had been sick for 20 years- he was late neuro Lyme!!!
so the message to me there is that unrealistic expectations can literally KILL people- (and for us, to do anything we can to stop people from hurting themselves)
it does take TIME!!! Since August is NOT long AT ALL!!! I fully anticipate that if you stick with a good LLMD and abx you will improve greatly greatly!!! And perhaps be symptom free or in full remission but there is no way to tell outcome that specifically- I wish there was.
Everyone I know locally who has stuck with abx has gotten symptom free, full remission or close to it, able to live a normal life again without lots of pain. There have been a couple of unfortunates who don't the bodies that do abx well adn they haven't gotten that because they haven't been ABLE to stick with abx, not their fault-
ANYWAY, YES it gets WAY BETTER than that, what you have described*)!
It can get wonderful again. I never ever believed I would get what I have. I never believed the pain would go away- but it did. And I have seen it time & time again- just 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
Thanks Sarah. I too get very depressed but I am determined to get better. That damn tick is not going to kill me! I was suicidal two months ago before I started treatment. I will never let someone convince me that I am going to be sick the rest of my life. Those horrible DUCKS made me doubt myself.
I will also NEVER accept being 80%. I am so sick of people saying that maybe you will be 80%. Where the heck did they come up with 80%? I WANT 100% and do not want to hear different .
I cry all the time and feel like crap most days but I am getting better. What I call Monicas Burning Scale (MBS) has gone from 10 to 7.5. Still horrific but it is better. I have been on IV Rocephin now for exactly 7 weeks and zith 250 mg for 5 weeks. The LLMD starts me on Mephron Monday ..mostly because I have been driving him nuts to kill the babs also.
Note, I will also devote my life to finding a permanent cure. I love the positive people on this board and thank god for their support. You have always helped me believe in myself and made me feel better. Never let anyone tell you that you will NOT get better. There will be a cure in our lifetimes...we just need to stand together, get really ****ed (sorry) and do something about it..collectively
Luv Monica
Posts: 422 | From CT | Registered: Oct 2007
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
I like that line..is this as good as it gets...
I was trying to recall that when I was going through a slump this week or so.
Jack Nicholson's movie came to mind and I could not recall that line..
..thanks for helping me recall it....
it is a good question....
one that goes through our minds....
for me the answer usually turns out to be no...
just when I am asking myself that question...
...I am usually reminded of others who have gone before me and are now living normal lives
..we do feel isolated and a lone with this...
..good thing we have this site
...good thing you posted...
when I find that fast forward button...I'll let you know
..in the meatime..it appears we need to keep the turtle and the hare in mind
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Also wanted to let you know about my email friend I met while at Samsun clinic looking for answers in Santa Barbara, CA.
She is ahead of me with her lyme journey.
We have kept in touch since 2003.
I have seen her go from being bedridden, going through tissues due to pain to starting water therapy and having to get out and throw up to being able to attend weekly now without a problem....
...and...drum roll....just getting back from a cruise overseas for several weeks.
..she is pretty much living a normal life now.
...she is still on pain meds but has really cut back on them and is on the path to cutting them out completely.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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posted
Babesia herxes can be quite tough .... you might look at our old "Babesia buddies" thread .... many of us were on Mepron last summer and talked about it there. It was a club of sorts ... you could start the thread back up, or a new one.
I saw a lot of improvement on Mepron! It's a good drug!
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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