posted
Hi everyone, I have been feeling really crappy from lyme, and of course I am feeling somewhat depressed. I watched the trailer to the video someone posted on the lyme movie coming out and quite frankly, it made me feel even more down. All of the stories seemed pretty negative. I am new to lyme disease and I kind of feel like, why even try if the chances of getting better are slim to none? I almost threw away my antibiotics until my wife stopped me> I am taking Zithromycin right now and I am having really bad herxes that feel like the worst flu I have ever had. Anyway, I don't want to sound like a whiny wimp, and would appreciate any experienced input. Thanks, Cornhusker
Posts: 16 | From nebraska | Registered: Jul 2007
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
How's THIS fact:
EVERY
SINGLE PERSON
I KNOW
WHO HAS HAD CHRONIC LYME DISEASE
WHO HAS STAYED ON ABX
HAS GOTTEN SUBSTANTIALLY BETTER IF NOT
FULL REMISSION
(excepting guy who killed himself 6 months into treatment and late ALS presenting guy who died 2 weeks into treatment!)
AND
my life was over, it was death waiting for me, my husband didn't touch me for 3 YEARS and my mother "let me go" to find peace in the afterlife BUT
MY LIFE IS GREAT
I have a grouchy pudgy husband I love
and SIX wonderful annoying rescued neurotic cats
and TWO incredible glorious smart daughters
and LIFE IS WONDERFUL!(*_!*)*)!*)!
So there*)!*!
I was the WORST excepting ALS presenters who came to our group and I am doing great and YOU CAN TOO*!)*)!*! If you just HANG IN THERE*)!)
Yup, I had MONTHS where I had given up, but KEPT ON doing what I was suppsoed to do- so if you feel like killing yourself PLEASE don't!! there IS life out there- life with pleasures you thought were gone- THEY ARE WAITING*)!!!!!!!
-------------------- 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
It's also a good thing to have so much fight in you!! Use it to GET WELL.....not to GIVE UP!!!
You will want to give up many more times...Don't do it!!!
I'm doing great after having had Lyme for 48 yrs now. I was in treatment for 4 yrs and am now nearly 100% and off abx for almost 3 yrs now!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
Just to echo a bit of what California said: when I first started Lyme treatment, I felt like I was at about 18% of my health.
Friends secretly admitted to themselves that they didn't think I could possibly survive, I was so sick.
I couldn't think, couldn't talk without stuttering. I was completely and totally exhausted. I had seizures, legs so swollen I wasn't able to walk wtihout limping. And the worst was yet to come, with extraordinary numbness and full-body paralysis (two bouts of that).
That was in June 2005. Now, I'm still on medications and herbs, but I'm at about 80% capacity. Back at work full time and about to go up to Montreal and Quebec City on vacation.
Don't give up hope. Ever. Keep fighting this; with patience, diligence, I really believe you can find your life again. A little changed maybe but still, a life you can live with.
Andie
Posts: 2549 | From never never land | Registered: May 2005
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
There's 43 replies up in success stories up top.^
That might be worth a read right now.
Depression can also be magnified via Herx. You've got an LLMD & are getting treated. Stick with it and tell yourself, "This too shall pass".
If your herxing & feeling like garbage, know that you'll soon be feeling improvement. It runs in cycles. Each cycle gets a little less miserable and a little more improvement.
Many of the people who have really severe problems had an awful lot of medical negligence and improper treatment.
Check in on the board with your treatment progress and any new treatments. There's a lot of great advice here that can save you from having some of the unpleasant experiences people here have had.
That's why people share a lot of negative info here......so it won't happen to you.
Chin up, you're on the road to recovery! Ali
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Just hoping you are feeling better today- if not, heck, I was depressed for months and months and frankly, I pretty much had gotten towhere I was in so much pain if I hadn't had my kid I would have been glad to die- but I am so glad I didn't because life is great now- and I never ever would have BELIEVED it could be again, but on the off chance there was an off chance I kept on doing what I was told to do where my only hope was- for me IV Rocephin-
I remember when I got the groshong put in I was six months into IV after a YEAR of orals with just PROGRESSION and a few little gains here and there but literally one inch forward and 5 steps back, just getting sicker and sicker and sicker, and the doctor putting in the IV asked me, "Why are you crying?" and I didn't know I was, he touched the tears on my cheek, it was the pre-op consultation, and I said, "I just don't see the point anymore."
And he said, he's not an LLMD so I'll use his name, Doc Long of CA Pacific Med Center, he said, "Every single person I've put a port or groshong in for your doctor has gotten better. I see them, they all come in like you- and when I take them out, they're all smiling."
I just looked at him numbly and in despair and a bit pityingly if I recall, like , "Yeah but not me buddy, I'm screwed, I can barely walk now."
And then 2 months later I called him to ask, "Can I jog with the Groshong in?"
I was feeling so good at last!!
Little did I know that it would take me a full year to regain muscle sterngth, mass and agility to enable me to jog again, I felt as if I could. He said, "Sure!" and I heard in his voice the memory of that instant when he touched my face, the recognition of who I was and the recognition of my doctor, a silent "Yup, another one of Doc S's patients doing good!"
But then I found, despite how good I felt, without pain, I was still so absurdly weak that walking the length of the house was a monumental effort for my muscles, and I had to do strength exercises and homemade physical therapy to be able to do simple things again.
But it was all different.
Because I wasn't in pain anymore. Or feeling like puking. Or actually puking. Or having convulsive, gut wrenching bowel things. Or watching myself fall or twitch or hearing myself slur...
ANYWAY, so now in our support group I hear an echo of Doc Long telling me that about my doctor when I tell newbies everyone gets better if they stick with abx- which is true- and sometimes they look at me with a similar look of self-pity and Sarah-pity, "Yeah but not me, I'm screwed."
One day maybe you can do whatever it was you wanted before Lyme with even more enthusiasm.
It probably doesn't seem real that you can get so much better, but I have seen people rise from wheelchairs and peopple throw away canes and one person who presented like a total nutcase, someone I didn't even believe had LYme, become normal mentally again on abx.
I am sending you
!*)*)!a psychic cup of chamomile tea*)!*)! !!*)!*)!*)!*)!*!)*!)!*)!*)!*)!*!)*)!*)!)!*!)!*)
Morning-
-------------------- 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
When it comes to whinny wimps, I am somewhat of an authority. It's not uncommon for lyme disease to morph into "whine" disease and I even had what turned into babyosis. I thought I was never going to get better and that my life as I knew it was over,but guess what-I got better. There is no fast forward and for awhile it will be right in your face but if a wimp like me can deal with it, I bet you can too!
Posts: 228 | From Wassaic NY. USA | Registered: Aug 2002
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Hi Nebraska cornhusker,
It takes a long time -- but keep treating!!!
You will get better if you keep treating. I have been telling myself this for the past 13 months, and finally feel like I am making some good progress! It sure takes longer than we would wish.
Seems like many of the folks who do really well are on multiple antibiotics and use IV abx for however long they need to. I hope you have a good llmd -- sound like you have a supportive wife!
The stories are only negative if we stop and get too discouraged. Hang in there and take care!
Posts: 2557 | From home | Registered: Aug 2006
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posted
Everyone, What can I say, you guys have really cheered me up. I am going print off your replys and put them on the fridge. I am glad I googled lyme disease 6 months ago and by chance came upon this site and some great people! THANKS!!!! Cornhusker
Posts: 16 | From nebraska | Registered: Jul 2007
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posted
I was diagnosed about 2 months ago and it has been a slow road for me just increasing my oral antibiotics from 100mg to 300mg. Every time I get up to 300mg., I feel like I am insane, uncoordinated [bump into walls], confused, completely fatiqued and drained of energy, and am unable to write, or type to work.
This is not encouraging AT ALL and makes me feel like one year will be about the time I will feel substantially better. I was thinking today that maybe IV antibiotics is what I need and would hasten my recovery; especially after watching the video by Brooke Landau,
What is the decisive factor constitutes or reason to switch from oral antibiotics to IV? I don't have any co-infections by the way.
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