In every aspect, my marriage now gone....going through a horrible divorce. I fight with my mom who I NEVER fought with. I don't enjoy my toddler like I should. I feel just not "there" with him or for him, although I take great care of him, do you know what I mean? I feel like I'm being cheated of these precious years with him because I'm always thinking about pain when I should be enjoying him, running and playing.
I look forward to bedtime. When it hits 7pm, I get my little one ready for bed, when before I'd stay up with him til 10pm and watch t.v. and watch him play. Those days seem so far away. It's been exactly 1 year today that I started having obvious wtf is going on symptoms that made me start doctor hunting.
When I wake up, I'm sad. I know I have a whole other day of hell to live. I get sad because bedtime is so many hours away. I am only 28 years old. I'm divorced, or getting divorced, I should be thinking about dating and friends and LIVING again, being me again. But, Lyme has stolen that away. I'm not me. I'm a person with Lyme.....even to my family now. I know they are so sick and tired of hearing, "Mama, I hurt." "I have to get better" etc. It's getting real old.
I think at first, family and friends were interested in my disease because of the obvious crazy controversy going on. It was mind blowing to them. Watching Under Our Skin gave everyone chill bumps. It was like a whole world of people suffering that we/they never knew about.
Now, the chill bumps are gone. I was told yesterday that I'm just going to have to learn to live like this. My own mom, who is sooooooo supportive, said I learned to live like this for a year, so I can do it for the rest of my life. We got into a huge fight. I mean huge! I refuse to live like this. Can't get an llmd right now. Literally no money. As I said in a post before, there is NO money. None. No pinching pennies anywhere, so please, don't do that to me.
I have a bottle of Levaquin and Rifampin with a refill on each. I'd like to go that route, but, I'm not sure to take them together or take the whole bottle of Levaquin then the Rifampin or what? Does anyone here know? I also have Bart. I have so many swollen lymph nodes in my neck and groin, it scares me every day. I also lose a lot of hair. I've been checked for Lymphoma but I'm scared that if I don't get these Lymph nodes to go down, something could go crazy in there and it could turn into Lymphoma. I know that there is a tie between the two, at least I read that somewhere.
My main symptom is neuropathy. It's not the kind that is just burning hands and feet. I don't have burning hands and feet. I have a burning neck, face, arms, and tummy. I've been MRI'd, I'm clear of structural things. The pain never stops. I've tried all the meds for neuropathy that they say should work.
Neuorontin, Lyrica, Cymbalta, the ONLY thing that works are benzos. Klonopin, Xanax, those things. I'd like to know if Neurontin works for you, Lyrica, etc. because it doesn't work for me. My pain management doctor said that Klonopin is only for anxiety and if that's the only thing that works then that's what I have. I'm NOT anxious. We had a huge fight about that. I'm so sick of the anxiety diagnosis. ****
But there's such a tolerance at this point. I read that you people take .5mg at night, etc. and I always wonder, wtf? It's been a year and to be honest, to live a normal day, almost like it used to be, I would have to take 10mg. Sounds like a lot huh? I don't get tired, sleepy or out of it, I just feel energetic, happy to not be in pain, and I'm out doing stuff with my son.
So, is it really true that you guys can really just take .5mg? I just can't believe that.
Also I want to add that I am CDC positive for Lyme as well as very positive with IGenex with a ++++ on band 31, along with others.
What can I do for neuropathy? My neck and face burn so bad. My skin feels tight and it just feels abnormal. I have so many different sensations going on in my neck it's ridiculous. And my neck muscles are TIGHT. Or at least they feel that way. But, once again, this isn't anxiety. I've had anxiety. I know what that feels like. I promise.
And once a month, I get a horrible flare of what I call "Labor-like" bone pain. For those who have had children and were in labor, I feel like I get those ripping, churning, twisting, horrible pains in my bones and it migrates from one spot to the next over and over. Forearms, shins, forearms again. Then after a day or so, or a few, it pretty much goes away.
That's how I know that I have Lyme, it's that flare every month that wouldn't make sense otherwise, right?
Thanks for listening to me babble. If you have any advice, please, let me know. Posted by astriapage (Member # 17120) on :
I feel for you, and reading your post sounds just like me, just living every day in pain, in misery. You can't wait until bedtime, and when you go to bed you can't sleep.
You watch TV all day,and that eventually drives you nuts. I know what you mean by a high tolerance-I am on a high dose of pain meds, and they give me energy, instead of knocking me out.
If I do not take them, I feel like I am dying from the pain. People say what I take would kill them.
I also know about the no money and being stuck. I have been unable to see an LLMD, but was CDC positive. I have also had a hysterectomy, gallbladder, appendix removed plus open heart surgery.
I often pray for God to take me out-don't leave me here barely breathing and suffering so much.
It is hard for me to say something positive to you, I can just say I am in your shoes if that is any consilation.
Posted by Wimenin (Member # 15294) on :
You don't mention if you're presently seeing a LLMD or not.. are you? If not, please sch an apptmt with a LLMD to start proper treatment. As you are CDC positive for lyme, perhaps you can have your HMO family dr prescribe some doxy to get you started till you see your LLMD...
As for the main issues, it sure sounds like a heavy does of neuro lyme symptoms. All I can say is, Ive been there, done that, and it will get better, but, it starts with a positive attitude about fighting lyme.
You can't let yourself slide into depression and high anxiety as that just makes your immune system work harder, right when you need all your energy to fight lyme.
Abx in conjunction with supplements is really the biggest weapon you can use to fight lyme, but you also have to have the perseverence to get up every day, and fight it. Nobody will do it for you, you have to do it for yourself, and for your child, family, friends etc.
You are not alone, and there are hundreds, thousands of people like you who are going through the same thing, or have gone through it already. This is a great forum for getting information, but its not a replacement for seeing a good LLMD who can get you on the right road to recovery.
Posted by seekhelp (Member # 15067) on :
Wimenin, the person clearly stated they have no money for a LLMD!!
Posted by pab (Member # 904) on :
Have you tried an anti-depressant? They can help with pain & help you deal with your situation.
I have a lot of pain in my neck too. I use rice packs (bed buddies) and heat them in the microwave. Lidoderm patches help me but they are very expensive if you don't have insurance. (Do you?)
Tramadol/Tylenol is a cheap pain med and works for most.
If I think of something else, I'll post it later.
Hang in there!
Posted by Rambler (Member # 18794) on :
iss,
Neuropathy is my constant companion. The ONLY thing that has made a difference for me is a vitamin B supplement used daily.
Years ago, my chiropractor recommended it for the (supposed) carpal tunnel numbness I was experiencing. Nothing fancy- just a B complex. It really helped and I notice when I don't have it in my system.
Once the Lyme torture started making my skin crawl and burn and twitch, I started with another B called methylcobalomin. More improvement.
It does nothing for the pain, but I am more able to tollerate it if my whole dang nervous system isn't firing off at the same time.
Every little bit helps.
Hang in there. You'll make it.
Posted by oxygenbabe (Member # 5831) on :
Amoxicillin is cheap, and in higher doses (6-10 grams a day) gets into the CNS. Maybe you can get an Rx for that.
Posted by paulieinct (Member # 17514) on :
I too suffer from neuropathy as one of my main symptoms. Mine is mostly in my legs and feet. I am 7 mos. into abx treatment, and still have no resolution of that symptom. However, I am hopeful that it will resolve.
I feel your pain. I am fortunate to have good insurance that covers Rx and LLMD ( I get reimbursed as out-of-network). Not being able to afford treatment has got to be hell. I believe if I was in your position, I would start taking those abx you have. Start with one at a time, at the highest dose for that drug. When you run out, there are ways to buy drugs off the internet w/o a Rx. I know it's risky, but certainly not more risky than doing nothing.
Go to a good psychiatrist. You are in deep emotional pain, and you need help with that. If you have to, go to a mental health clinic where they won't charge you or will only charge what you can afford. Do not rule out antidepressants. For me, Paxil changed my life 15 years ago, and has allowed me to function, even through the pain of this godawful disease.
Do not allow yourself to go down the tubes. People here know what you are feeling, and are here to help. A good, caring shrink can help enormously too. -Paul
Posted by Wimenin (Member # 15294) on :
Im sorry... I didnt see that you have no money the first time around..
Do you have any medical insurance at all? If so, maybe at least getting on doxy long term is possible? If yuo cant get some abx, then your only other alternative is to go natural and try that routine. Supplements such as olive leaf extract, oregano oil, garlic, cats claw, etc...have good anti viral, anti fungal, anti biotic properties as well.
I dont have any easy answers for you, just wishing you well... sorry again that I read it wrong...
Posted by steve1906 (Member # 16206) on :
I also suffer from neuropathy as one of my main symptoms. Mine is all over my body. It's been one year now.
I just want to say one thing to you; please force yourself everyday to do the things you want to do. We all know it very hard, but we have to keep going forward...do it for your son if not yourself!
Most of us are in pain everyday/all day! Don't give up and let this dame lyme beet you.
Keep talking online to all of us and try not to discuss the way your feeling to family and friends. Once and a while is okay.
Don't give up!
Steve
Posted by bettyg (Member # 6147) on :
imsosick,
i'm so sorry for all you are going thru! life isn't fair, and we lyme patients really know that for all our out of pocket expenses we pay.
before i forget, please copy your post at the top, and go to my post in ACTIVIST on sending letters to FRANK PALLONE, where another board, mdjunction.com, will be meeting with him personally in future and TAKING ALL OUR LETTERS to him.
pallone is the chair SITTING ON OUR LYME BILL IN HOUSE!
read down thru there and DHARMA has shown her email to send your letters to.
just please do as she says:
subject line....show MY LYME STORY FOR PALLONE
show your full name, address, phone no., email in case someone were to get back to you.
your post above tells it like it is, and really hits ALL THE LOSSES one goes thru with this damn disease! thanks for doing this for YOU and entire lyme community!
i hope others will share their stories...old ones or a new one typed from scratch. JUST DO IT PLEASE! we've waited 10.5 years for lyme bill to be discussed, passed, and signed by any president!
OUR WAITING TIME IS OVER IN 2009 !! MAKE IT HAPPEN.
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