joalo
Frequent Contributor (1K+ posts)
Member # 12752
posted
I'm so glad you are feeling better. You had us very worried about you.
Don't disappear on us now. Please keep us posted on how you are doing with your lyme treatment.
-------------------- 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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posted
I wasn't at the hospital that long. Whatever they were IVing me really started working quickly. Im not 100% back but I am going to be fine.
Posts: 18 | From by a computer | Registered: Dec 2009
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posted
Good to hear, and that you understand what happened.
I hope you will continue to work on alleviating as many symptoms as you can.
I'd also like to encourage you to work on being understood by your family. You deserve it. You are their dad and husband, and you have a bona fide illness that you shouldn't have to apologize for.
Posts: 13171 | From San Francisco | Registered: May 2006
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Glad to hear you are doing better!
Sometimes it takes awhile to find what helps. Please stick with it...you and your doctor are obviously doing something right because you sound a lot better.
Don't quit until you are feeling like your normal self psychologically. I know you can get there, but it might take time. Best of luck...glad you felt like you could reach out and get the help you deserve.
Posts: 4590 | From Midwest | Registered: Jun 2008
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Pain sucks noway around it. I know I was infected in 1988 and until this past year sever pain everyday in one form or another . Find out what they Ived you with and post it here you may be able to help others too!!! I hust hope it wasnt any steroids.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
Provigel did a number on me.....could not take that drug.... very scary things were happening with my mind..and couldn't understand why....
it was the Provigel...
glad you are doing better...
keep us posted... mtree
-------------------- worrying about tomorrow takes its strength away from today Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008
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posted
I just got an appoint with a Lyme and tick born disease expert. I had to fill out a history and they called back very quickly and said I qualify for an appointment. Thanks for pounding that suggestion in, it may just change my entire life.
God Bless will keep in touch.
I will find out exactly what the hospital gave me, I know 1 of the meds was Diazapam I think, an anti panic med.
Posts: 18 | From by a computer | Registered: Dec 2009
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Hi nomorepainnn, I'm glad you went to the hospital and got the crisis taken care of. I'm also glad you made an appt with an LLMD.
I was very ill and prayed for death, too, though I never got suicidal. I just didn't see any way out of the pain. Now, I'm 100% well. Treatment makes a huge difference, I'm glad you're pursuing it.
Hang in there, it's not an easy disease and the psych symptoms are just plain horrible.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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also..as much as it is not meant purposely..for some people to get upset with an incredibly ill person is heartless..
I too am afraid of being put in a psch hospital and have been and physically they did not address any of my medical problems and i declined very badly physically.
Your story is so similiar to mine..that is why i do not post alot..in fear of others getting totally upset with me but you are very ill and need the help
Surround yourself with supportive people and I will say this...as had as it is because you live with them...do not waste your time on trying to explain lyme to your family unless they are willing to learn and help you...
I am seeing a lyme literate psychologist who is helping me immensely..i live every day also praying for death but i have had to pull all the limited strength in me to get myself to an llmd who takes insurance
I was diagnosed with lyme, bartonella and other infections a few years ago after being misdiagnosed for mahy years
I have social anxiety, possible anylosing spondylitis, 3 spinal cord injuries from severe dengerativ disc disease, emotional issues, seizures, thyroid disease, and more
I was put on a very high dose of steroids..the strongest steroid you can be on and i had noone to advocate for me not to put me on steroids..i was too ill and my husband claims he forgot about the effect steroids have on lyme
when i educated him and he educated himself over and over and he did not even contact my llmd when i was in the hospital for a month on steroids and so even the llmd did not know how much i was on...
well..ever since the steroids...i went downhill and have been progressing ever since and they pulled me off them too fast and i went into total adrenal failure and now need a small amount of steroids just to live
I forgot your med list but if you are on steroids....steroids have a horrendous affect on depression and emotional problems, whether preexisting or not so i would keep that in mind....
I think i am anklyosis spondylitis from the lyme and i am afraid to go to a rheumatologist because they will want to put me on heavy duty steroids...i cannot move my neck, am on round the clock meds oxycontin and percocet and even on meds, my pain is a 100 out of 10 most times of the day.
I cannot often bend my neck up to even stand straight..it is as if my spine is fusing together or something.
Anyway...i have the name of a lyme literate psychologist if you want it..she is wonderful and is helping me immensely...
all my love and support, nancy
p.s. i wish i wasn't so ill myself right now and i could offer more help and i know it is easier said than done but realize that you are ill and hyou didn't do this to yourself and i agree you do need to seek support but a psych hospital is not the place for you...
a hotline is a good idea and i use it too and there are also warm lines if you need to chat during the day and just need someone to talk to
(i used to work in social services and health education) now i am too ill to help myself but i used to help others with resources, etc
I am not religious at all so i will not say pray to god but everyone is entitled to their beliefs but i will say keep reaching out and we are here if you need us...
i am here as much as i can physically and emotionally can be right now as i am desperaely trying to seek help for myself and trying to deal with my own very tragic family situation for which i am not wasting my energy trying to educate them anymore because they are emotionally unavailable to me and always will be and always have been...
Thinking of you michael
love nancy
-------------------- Sick for 20 yrs+,dx'd 10 yrs ago fibro/cfs & hashimotos.dx 4 yrs ago w/neurolyme,recent adrenal failure, recurrent spinal cord injury,probable ankylosing spondylitis. Unable to get treatment & severe Cognitive, psych & physical symptoms progressing. Posts: 82 | From az but moving to ft lauderdale, florida= plantation. fl | Registered: Aug 2009
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ping
Frequent Contributor (1K+ posts)
Member # 6974
posted
quote:Originally posted by lymebrained: ....Surround yourself with supportive people and I will say this...as had as it is because you live with them...do not waste your time on trying to explain lyme to your family unless they are willing to learn and help you...
...i am here as much as i can physically and emotionally can be right now as i am desperaely trying to seek help for myself and trying to deal with my own very tragic family situation for which i am not wasting my energy trying to educate them anymore because they are emotionally unavailable to me and always will be and always have been...
Thinking of you michael
love nancy
Michael,
It's very important that you keep the appt with the LLMD and if TBD's are in the picture, get in treatment right away! I can't emphasize this enough.
As much as some might not like this, Nancy has given you some real pearls of wisdom here. It's a terrible reality, but for some of us, family and those you surmise should be supportive turn out to be the bane of your existence, second only to the illnesses you suffer from and sometimes, they even win first prize. I, at least had the ability to completely separate myself from my family and unsupportive friends and to this day, remain separated and am good as gold with the decision. You, however, can't completely separate your physical location from your family and given that you have children, you shouldn't. They (kids) don't understand for now, but they could gain a great deal of understanding in the future from living with your experience. You say your in a basement location that's been converted into a room that only you inhabit. Well, okay; aside from mold issues and some others, if it's the best way you have of protecting yourself, then, you do what you have to do.
A couple of hints if you begin treatment for TBD's and since it's highly likely you'll be herxing soon enough, I recommend some supplies:
Get a fridge / freezer of your own down there, if you don't already have one. Stuff the freezer full of ready to eat, GOOD foods and the fridge with no sugar added hydration items; I'm sure others will come along and give you suggestions. (I've taken a liking to pomegranate juice of late. It's rich and I can't drink much of it, but it's good for me, however, your tummy might object, so try it now before you stock up.) Good water, of course, is all important.
A microwave is important, if you can manage it. Since the kitchen is usually a family hangout, you need to eat GOOD food, in peace.
You'll need extra bed linens, blankets, towels, heating pad and ice, or ice pack and large bowls to soak wash rags, etc.
Find a place for your medications, it should be DRY, away from light and cool. (I'd really be concerned about the dry part, since you're in a basement.)
I can't even begin to advise you how to 'steel' yourself again an uncooperative spouse and others that don't understand. You'll just have to accept that they might not ever 'get it' and avoid certain, maybe all sorts of conversations that lead to any upset; it will take a lot of practice. You must do it, as your life, literally, depends upon it.
With regard to Religion, all I can say is that I Believe and can't imagine having no faith while going through the trials that you've no doubt encountered and are about to encounter. While certain beliefs might indeed be portrayed in our modern society as something that I disagree with in many ways, I can tell you that the Truly Faithful suffer pain as bad or worse than anything you, I or anyone else on this site has yet to suffer and are tough as nails, while being gentle as doves. I've met a few of them face-to-face and don't understand the depths of it myself, but we all will, someday.
You need to find something or someone to hang onto for this ride; the people on this site are an excellent starting place. Keep in mind that we're all suffering too and very human and don't always get along, but we manage.
Get started collecting the needed items now and try not to worry about other people dissing you. Trust me when I tell you that, "Everyone is going to get their turn". One way, or another, Michael. Pain is the great equalizer and will eventually be known by all.
Please check your thread often for suggestions on setup so you can better handle your treatment, should that be the outcome.
INDNJC
-------------------- ping "We are more than containers for Lyme" Posts: 1302 | From Back in TX again | Registered: Mar 2005
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posted
Michael, glad to hear you are better. The support here is great.As for your family it would be good for you to get info on Lyme Disease and share it with them, my children were very young when my husband and i first had symptoms of Lyme and they helped out any way they could...kids can handle alot more than adults i think.most days i am either on the couch or in bed,and my kids will ask what i need and they will get it,(it made them more compassionate to other people)I think it was all the meds that did that to you, are you taking any vitamins or probiotics? that would help.If it were not for this site i too would feel alone.
Posts: 16 | From Michigan | Registered: Oct 2008
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WildCondor
Unregistered
posted
hey!Hang in there because it will all get better once your meds are stabilized.
I want to make sure the tick borne disease specialist is indeed, a good one, and you will be on the right path. Let us know your location, etc., or if another poster can confirm you are going to see a good LLMD and not some duck that would be reassuring.
Meds can do a number on you....this takes time. Just know that you are NOT alone and peole out there care about you. We are here to help, anytime.
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