When is enough, enough? I have been under treatment since late July, 08. I really felt I was getting much better but lately it feels like I am slipping back with terrible pain.
I was treated for Babesia for 5 months and been targetting Lyme for over 3 months. The pain and discomfort is horrendous as many of you already know from experience. How are we expected to live a life of horrible pain and suffering with no light at the ned of the tunnel.
My life as with many of you, is suffering in so many ways. I have recurring dreams of being robbed and shot and then I always feel sad when I wake up to find it was only a dream.
I am slipping at works and it is becoming noticable, my whole life is collapsing around me. I need someone to talk me down from this cliff.
To make it worse, they found I have MGUS which can cause these symptoms, although many know or believe MGUS to be caused by infection so I don't even know if this is all MGUS caused by Lyme and the infection is cleared but the hell of MGUS continues. I don't know what is what anymore.
MGUS - Monclonal Gammopathy of Untermined Significance - most thought to be caused by an infection. Basically the immune system starts producing extra monclonal protein antibodies in the bone marrow for no reason.
I don't understand why this all started with tingling in my left hand which they determined to be an ulnar entrapment. I had sugery and boom, the pain and tingling begins in my feet, the chain reaction begins. I feel so alone on this board as the only one who has this unique scenario.
Rich
[ 03-16-2009, 02:27 PM: Message edited by: richedie ]
Posted by barbarame (Member # 16423) on :
Hi Rich, Sorry about your frustrations. It is hard.
I have been in treatment for a little under a year. I have severe sensory perceptual impairment which I feel very little. Appetite, hunger, emotions, brain fog,you name it, the ground under my feet I can not feel.
The negativity can be from the disease. It is hard to distract yourself but is very helpful. My worse times are during the day when everyone is gone.
I have the TV running with something educational as to try not to trigger the negative thoughts. History channel, animal planet, food network.
I try to do one thing for my family member so when they come home, to make me feel good. Make a sandwich, pour a bowl of cereal..something.
I have experienced pain but it is distorted too, so I am not quite sure where it is coming from. I don't know what to tell a medical doctor either. My brain doesn't tell me. Sorry I can't help you with the pain part.
Someone called me the other day to say they are better. It took a long long time.
"The wind howls at the mountain, but the mountain does not bow down"
Peace, Barb
Posted by sutherngrl (Member # 16270) on :
This is the face of Chronic Illness. These are the feelings that we all have dealing with this horrendous disease.
I just try and accomplish a couple of things a day so that I feel at least a small sense of accomplishment.
I look for something funny to watch on tv or listen to peaceful music.
I try to make myself see something funny in as many things as possible; and just wait and know that one day things will be better. One day my life will return to me and I will be a better person for enduring all of this torture.
I think you can never give up. It is only natural to fight for your life. It's okay to get down and feel negative at times; but you must pick yourself back up and continue the fight.
Posted by kim812 (Member # 17644) on :
Rich- I have been in treatment for over 2 years. I had 4 good months last year and then boom back to where I was for no good reason.
I have thought so many times of quitting and it is almost a daily thought. I am going to a LLMD in NY and even he has not been able to bring me back to where I was. So I am very discouraged to say the least.
I don't have pain but have chronic fatigue/exhaustion which in its own way is a living nightmare. I wake up tired and can do very little without causing severe exhaustion.
It is hard to understand how I could feel 80 percent a year ago and now back down to 40 percent. How can that be?? I don't feel sick or have pain but the fatigue prevents me from having a life.
My husband keeps me going and won't let me give up but at what point do you say enough..you are still fairly new to treatment so don't stop now. I understand everything you are saying..
Posted by Buster (Member # 19472) on :
Have you changed any meds, ABX, supplements, foods, activities recently?
Could you be toxic, need to detox?
Posted by richedie (Member # 14689) on :
It is touhg because the pain is always there - I want to chop off my arm and foot. The pain has spread up the arm to the should and now in the back. The MGUS complicates things. I don't know what is what anymore. The pain is tough because there is NO escape other than sleeep. I want to sleep and not wake up. I HATE mornings now. I used to love my mornings.
How would I know if I need detox? People tell me to take loads of salt for the worms/parasites in the intestines but my doc said nothing of this.
I am on so many supplements I would need a book to list them all and it seems new ones are added all the time. Biggest change was pulsing Flagyl/Doxy and biaxin for two months now.
I keep wondering maybe this isn't Lyme and friends but my Babesia FISH tests and one other babesia test were positive.
Posted by feelfit (Member # 12770) on :
Rich,
I had ben untreated for a long time (18 yr) and have been in treatment for 16 months. I have had your thoughts many times.
There isn't an option, you have to keep on plugging away. Really, what else can you do? Some times are really difficult, but I find that eventually those dificult times subside and life is ok again.
Chronic illness can make our world become very small. I guess that the key is to be stronger than the illness, rise above it....
Also very hard to do when symptoms are reminding you by the minute that things are not right.
It does work to try to focus on something else, if you can move your mind to do it.....
I struggle with this everyday. I am going to win, you will too. Hang in there.
Your signature reads "I am Improving" remember that, focus on that.
Big Hug, Feelfit
Posted by Need Lots of Help (Member # 18603) on :
Rich,
I am sorry work is so difficult for you. I just got diagnosed in Oct. 08 and actually had to quit working in Nov. 08. I have been home, and I thought the rest would help me a lot. But, it hasn't.
I still wonder if I am ever going to be able to go back to work. I am glad my husband works and understands my illness. I am wondering how long he can keep going, we found out he had Lyme in Dec. 08.
First, I heard that people who have been sick for years, takes years to get better. And, there is no one treatment that helps everyone. Unfortunately it is trial and error.
If it helps, I have been treating since Oct. 08 and don't feel one minute better for it. But, when I do, WATCH OUT!!! You will see skid marks where my feet are, because I am going to do so much stuff that heads will spin!!!
We know where your feelings are coming from, we have them often too. But I know that my husband and daughter need me. Otherwise, I would have given up long ago!! I have to figure out the answers so I can get my husband and daughter well. It may kill me, but I won't go down without a fight.
We lymies are tough people. You can do it!!!
Shalome
Posted by richedie (Member # 14689) on :
But I have something you all do not or maybe don't know about! MGUS! It is one thing that complicates all and makes me wonder....but if I have multiple positives for Babesia....doesn't that mean anything? You all should be checked for MGUS.
Posted by abigail (Member # 14936) on :
If it weren't for my children, I think I'd go ahead and lie down and die. Not only are we dealing with this illness, we are treated like a bunch of lepers. I understand what the term "quality of life" is about now. I don't know where I am going when I die, but it can't be worse than here. Seriously, things would be different if I didn't have loved ones depending on me. This world is a wreck.
Posted by suzeq (Member # 19303) on :
Rich,
My husband has had symptoms for 10 years and even underwent open heart surgery at age 43 that my now be Lyme related. He has been on pain meds for 4 years and hasn't been able to work for 2. This was after being a climber and search and rescue guy for 13. Then they thought Lupus and a year of nasty and nastier drugs ensued.
We still don't have a diagnosis of Lyme and not even a treatment for Lyme in sight. I feel your frustration and hope this lets you know that while you're frustrated -- it could be worse, at least you're on a treatment plan for a diagnosis. Wishing you all the best, Suzeq
Posted by map1131 (Member # 2022) on :
Never call it quits. Just change your approach or protocols. Do anything, or about anything to make improvement.
One small step at a time. Open your mind and heart to other approaches.
I wish you well. I did abx for three years and finally one day realized I was on the wrong path for myself. Abx were not MY helper.
I know it's hard work to figure out what other protocols you can try. But nobody can really make the decisions for you.
You are in charge of your healthcare and well-being. Doctors are only tools to be used.
Pam
Posted by bettyg (Member # 6147) on :
richie, hugs/kisses
what is mgus? please spell that out once at the top where you 1st mention it as i'm totally lost ok.
richie, i couldn't read your 1st post; too long of solid block text for this neuro patient. could you break it up for us neuros and then we might have some suggestions for you.
i just had to scroll on by... just click on pencil to right of your name on your top post; other replies looked to be ok ...
Posted by richedie (Member # 14689) on :
quote:Originally posted by map1131: Never call it quits. Just change your approach or protocols. Do anything, or about anything to make improvement.
One small step at a time. Open your mind and heart to other approaches.
I wish you well. I did abx for three years and finally one day realized I was on the wrong path for myself. Abx were not MY helper.
I know it's hard work to figure out what other protocols you can try. But nobody can really make the decisions for you.
You are in charge of your healthcare and well-being. Doctors are only tools to be used.
Pam
So what approach did you use to get well???? Thanks!
Posted by sparkle7 (Member # 10397) on :
It's rough. I've been ill for almost 13 years now. Sometimes you have to start thinking outside of the box & try something completely different. Especially, if what you are doing is not working.
I take pain meds if the pain is too bad. It helps quite alot. Oxycontin & Vicodin have a bad rap as far as being very helpful to have some kind of normalcy. If you are in pain, you may want to ask for something to help you.
When I wake up, I feel like I was hit by a train - so, I know what you mean. I just keep trying new things to see if something will eventually help.
There are plenty of alternative therapies to try - even if you don't have alot of money. I know if gets depressing... I used to be a different person - the illness has changed me in many ways.
It's getting harder for me to remember who I used to be prior to all of this. It's sad but I have gained some insights about life. If I could reverse things - I would not want to go through this. There's not much I can do about it.
It is alot like torture only we are still here, living our lives. Many of us don't look ill which is weird. Many people can't understand it & we get little support from the culture & media. We just have to keep trying to go forward as best as we can.
Posted by djf2005 (Member # 11449) on :
it takes years man, hang in.
im 80% well after 3 yrs abx.
it takes about 5 yrs.
Posted by dogshowdisaster (Member # 19168) on :
Hi.. Call it quits?????? You CANNOT do that. Call me. Yes, this disease sucks, but you can fight it. I am going through misery with this also. We all are. You can't quit. And..Betty..please be more supportive.. Thanks.. Eileen
Posted by Need Lots of Help (Member # 18603) on :
Rich,
I have to think that treating lyme and co could even improve the MGUS. Even though I don't really know what it is.
I think the lyme throws the body completely out of whack. And, treating lyme and co could slowly bring it back.
And please god if it doesn't, don't anyone say it. I am sick and in the dumps too, but I have to have hope that I can get better....
Shalome
Posted by c3mom (Member # 16412) on :
Richedie, sent you a PM
Posted by richedie (Member # 14689) on :
I just don't think I can do it any longer. I am anti-social, don't communicate effectively with my family any longer, I am losing my relationship with my daughter, I can barely functionm at work, losing my life.
My doctor told me most of their patients are well within one year, a few took longer. Either I am one of the few or will never get better.
The monetary stress is killing me. we are borrowing from my parents to pay the health bills and they said we do not have to pay it back.
However, I can't expect them to pay forever. If tyhey don't pay, we certainly can't afford it and I would have to stop treatment. I am thankful for them.
They don't understand why I am not better by now. People are starting to wonder about me in weird ways. My doc does not want me taking pain meds now.
I tried everything over the counter in huge doses, nothing works. I have been doing acupunture for 4 months with no luck. What a waste. All I care to do is stay under the covers all day and die.
Weird thing is, I have very little fatigue at all. My issue is all about terrible pain and tingling/numbness.
I won't live this life any longer if the pain continues for too long. I just can't be myself.
[ 04-13-2009, 10:47 AM: Message edited by: richedie ]
Posted by sixgoofykids (Member # 11141) on :
I wasn't myself either. I am a very sociable person and I wanted to talk to no one. I actually had trouble putting thoughts into words.
I couldn't leave the house alone because I'd get lost or disoriented (or both).
I was in terrible pain.
I continued treatment and am nearing remission. It takes time. Even though it seems like it has been a lot of time already .... it can be much longer, unfortunately. Hang in there.
Posted by LisaS (Member # 10581) on :
Rich, I understand what you're going through. I can't stand the these helpless feelings, I had to quit work, after 18 years of lyme. I am now pretty much bedridden. Some days I think I can't take it anymore and some days I get up and want to fight. It's hard when you start to lose that drive to fight. I don't have perfect words to make you feel better. I'm more saying your not alone and if you ever just want to vent just message me! ANd mostly I just wanted to send you hug! I hope by the time you get it, you're already feeling better.
Posted by Snailhead (Member # 18091) on :
God bless you. I'm sorry. For what it is worth We know...I promise we know.
Posted by jt345 (Member # 19638) on :
Hi Rich
One thing about Lyme . It never gives up and nor should You. I have had lyme since 1988 I think maybe longer. I think this is my 14th year of treatment. I say think because I don;t remember.
Last summer We lost all of our records in a flooded out basement.
I have started back from schratch and intend too fight this till the day I die. There are nights I wish the Good Lord would just take Me in My sleep.
But I have a wife too think about. Someone for Her too come home too. I would not want that taken from Her.
Feel free to PM Me any time I might not have an answer ,but I will not let You hang out too dry.
I hate too say this ,but welcome too the world of chronic lyme. Or maybe not in Your case ,You are still fairly new too this. Reach out too someone who has it worse than You. give Yourself too others,and in return You will find a new You.
Stay strong for us,We need you. I was crowned appleseed by a dear friend over 14 years ago.
I know crown You appleseed the second,welcome too the knighthood.
appleseed be as well as you can be today
Posted by Zebco 33 (Member # 18376) on :
Aw, Richdie, I'm so sorry your feeling so desperate.
I was dx'd last yr. almost to this day. I thought I was in like Flynn, 'cuz I was put in the hospital 2 weeks after tick bite.
Hooked up with all my abx I.V.'s, yadda,yadda, yadda.
Now, out of the blue, going Neuro..Legs twitching, aching, burning.
Here I go again. Have an appt. with a neurologist tomorrow at 2. Scared I may have MS or ALS from my lyme that I thought I "caught" in time. I feel your depression. I think those dark thoughts your having. Honest I do.
This disease sucks, no doubt. Hang on a day at a time. Don't overwhelm yourself. PM me if you want to get it all out.
When you least expect it, you may just feel hopefull unlike today. I'm very hard on myself and I am not a social person at all.
Please use us as your tethers to hold you from blowing away...We'll all hold you together. When no one else understands, we do.
I don't know what tomorrow holds for you or me or anyone here, but I do believe in the power of prayer and tonight, I pray for your angels to take your grief to God and send you some peace and hope.
A couple of years from now or sooner, you may be helping someone else who feels just like you do now and offering them visions of hope.
When your in the middle of your own tornado, you can't get perspective, but we can.
Honestly, God never makes mistakes. Just take it slow and know we are all praying for you. Posted by HaplyCarlessdave (Member # 413) on :
I'm so sad to here about you troubles. Lyme sucks, indeed! I will say, though, it sounds like your doing the right thing. It sounds like you're having something of a "Herxheimer" reaction. ( I assume you've learned about these; if not, somebody will fill you in here in LymeLand) it is often a a very long and frustrating fight; the battle with lyme-etcetera. Many times in the first 2 years , I also wasn't convinced that I was getting better! A couple "extra" supplements that helped me immensely: garlic, 'nutrijoist' capsules, 'nutrajoint' powder )to be mixed with juice or water). It's good that you are treating babesia right away-- that was ultimately the key for me. Another thing that was very good once I was through the critical phase: Heat- such as "hot tubs", Saunas, and hot showers and baths. The pain with Lyme was real bad. I was a "basketcase"! I didn't have much luck finding a good enough "pain killer" to make it go awy! The combination ofibuprofen, heat, and, in fact, the 'nutrijoint', helped considerably, though. If ...'doctors'... (you know what I mean, most likely) tell you have all sorts of other things, chances are, they also dcome from the Lyme, especially if your Lyme has gon untreated for a while. Above all, don't take steroids, even if some well- meaning but ignorant doc prescribe them. Well, good luck in your fight! [URL= "http://www.myspace.com/bluecayuga"]DaveS[/URL]
Posted by richedie (Member # 14689) on :
I was wondering if I am having a Herxheimer reaction from Artimisinen which I started last week.
ofibuprofen? Never heard of it. nutrijoint - I'll look it up.
Posted by beths (Member # 18864) on :
I was very very sick from lyme and co's. Lost 20 lbs fro an initial weight of 115; couldn't eat, horrible stomach issues. Couldn't leave my house for almost a year..around 15 months, I started joining the land of the living. At 2 years, I was well enough to stop abx..relapsed, took 2 months to get back to @ 80%.
My kids need me, I love my husband..so I kept going. It wasn't easy..I still get down somedays. But I will fight this and get my life back..I just take it one day at a time. Plus..my stomach is ok now..had fun putting back those 20 lbs!
Hang in there..it takes time.
Posted by richedie (Member # 14689) on :
with all of the pain I have had the last week or so came soon after starting Artimisenin.
Also, I noticed the last week, my temperature has taken a nose dive! I was steady at about 98....but has since been around 96-97 degrees, My wife says I don't even feel alive.
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