posted
I was diagnosed with Lyme Disease in 2007. I had alot of symptoms but I could function. At the end of 2008, my fingers started getting very stiff and hurting to the point that I couldn't
open jars, water bottles or even cut meat. At the beginning of 2009, I started having severe pain in my whole body. It's very hard to explain but it gets so bad sometimes that I feel I can
barely take it. Sometimes, I don't want to wake up. I'm not a suicidal person at all. It's just that the pain gets so bad. It's in my muscles and my joints and also feels like it's in my bones
sometimes too. If someone barely bumps into me on my arm, it hurts really bad. I don't know what else to do and I'm out of answers. My doctor thinks that I may have an auto immune
disease. I won't know what he thinks it is until I go back to see him. I do have Hashimotos so it does make sense that my body may be attacking itself. Does anyone know if anything
can cause this much pain? I don't know how much longer I can take this. I can't imagine living like this for another year. I dont know what I need right now..support, answers, anything!
-------------------- The advice I give, should not be considered medical advice. My opinion comes from years of research and experience. Posts: 233 | From Somewhere | Registered: Sep 2009
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posted
auto immune is the worst pain i have ever endured. steroids, with codein, are the only thing that would even touch it, for me. However, get off the steroids as soon as pain is manageable and onto a healing path of antibiotics and or herbs. DO NOT WAIT. the longer you wait the worse it gets. dyna I am not a DR.
Posts: 160 | From Mid-east USA | Registered: Jan 2010
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lightparfait
Frequent Contributor (1K+ posts)
Member # 22022
posted
YOu may want t consider trying the Allergie Immun therapy...as I had all those pains you speak about., and have a diagnosis of lupus.
My lyme is now gone...and just am working on the residual inflamation and trying to get my body to balance and remove the imflamation...
Recently, while on the 9th round of Alleragie Immun, all my painful joints, (knee, fingers) have gone away...I have had this jpain most of my adult life. And alos this month, my fibromyalgia type neck, and upper back muscle pain is finally gone.
It appears that my body was not able to absoarb nutrients correctly, like amino acids, and minerals, and my joints and organs have been "malnutritioned " for years...Allergie Immune is correcting the pathways, so my body can now absorb nutrients from my foods, I can now digest things in my gut, and am improving in many unique body functions.
I amazed most about the life long inflamation going away...and also my sun sensitivity!
IF you work on your gut, you will get resutls...and Allergie Immune is individual, based on your own DNA...
you may want to review the threads...
Best to you,,lp
Posts: 1009 | From NJ | Registered: Aug 2009
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posted
Lymed out I can relate to you or at least my husband can. He also has hashimotos, low testosterone and lyme. And it is his pain and stiffness that cause the largest issues for him. After 21 months of antibiotics he still has extreme pain and it is so hard to understand. Pain meds control it to a degree but still very debilitating. Persevere for answers and hang in there. I think it may be finding the right abx. Someone on here suggested clindamycin for pain for my husband our dr would not do it due to side effects. He is currenlty on bactrim to early to tell if it is helping with pain. You can also read up on the roadback.org. Someone on here recommended it to us. It has a lot of info on autoimmune diseases and fighting them with low dose abx. The hard thing is how do we know if it is still lyme or another autoimmune disease or even both..... LT
Posts: 19 | From Poland, ME | Registered: May 2008
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posted
dyna: Thank you for responding. I hoping my doctor will prescribe a low dose of hydocortisone. I really need to be able to function. Right now, I can't sleep because the pain is so bad.
lightparfait: I will read the thread. I always wondered what that thread was about. Thank you for telling me your story. It gives me a little hope. What I don't understand, is how I got this way so fast. One year I was functioning, then the next, I can barely get up off the couch/bed. The pain seemed to start when I started treatment last year in March and it never went away.
-------------------- The advice I give, should not be considered medical advice. My opinion comes from years of research and experience. Posts: 233 | From Somewhere | Registered: Sep 2009
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Iturkington: Im sorry that your husband is going through that. You are a trooper for sticking by him. It's hard to put a smile on your face when the pain is so intense. Most of the time, I'm crying and the other time, I'm screaming. I'm really miserable right now. On good days, the real me comes out and I laugh and joke around. I miss the real me so much and I have no clue how my husband or my kids put up with me. I just want to be me again.
Lymetoo: I will ask my doctor to test me for celiac. Thank for the information. I think I have a good LLMD. He listens to me and has years of experience with Lyme and other Chronic illnesses. I'm hoping he can figure out what's causing all of this pain.
I haven't really had a steady treatment yet because I have liver problems but I've been on Amoxy a few times, Biaxin and Levaquin. I was on this with an old LLMD. I was supposed to have a picc line put in and start Rocephin and pulse flagyl but I never started it because of my liver. So, this is where I am now, going back to see my doctor to see what my next step will be.
-------------------- The advice I give, should not be considered medical advice. My opinion comes from years of research and experience. Posts: 233 | From Somewhere | Registered: Sep 2009
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posted
Lymed out: You sounds exactly like my husband, I know he misses smiling and joking around. It is hard to see him in so much pain. I can understand your wanting to be you again. This disease takes away so much. Hang in there with it all. Have you tried NAC at all for your liver enzymes. I know this is what helped my husband do 9 months of rocephin. Prior to this his enzymes were up alot and the first month of IV or so they were high and he had to go off for a bit. But the NAC seemed to really help wtih his liver. And of course lots of milk thystle, And the actigall if you can for the gallbladder, it seemed to work for him.
Posts: 19 | From Poland, ME | Registered: May 2008
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lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
HOld off on that cortisone!
I have drug inducted lupus when I take my antimalarials...long story....
But the point is that I have been barely surviving with taking some malerone.....
Then started LDN yesterday, with full load of antimalarials, and did not have "lupus like" cluster of symptoms attack me.
It feels like some kind of a dream.......
Don't know what the road ahead looks like, but today I am hopeful, to a scarey degree.
The pain of lupus combined with lyme/babesia is enough to make any person question being alive. I know what you mean about that.
I thought even a person in late stage cancer could not have this much pain, and wondered why God seems to look the other way during this kind of suffering.
Of course I know he doesn't look the other way, but I tell you, when you live with that kind of pain day to day.....your mind starts to think such things.
Have you tried LDN....which would have fewer side effects than cortisone?
Mary
Posts: 1034 | From North Carolina | Registered: Aug 2003
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Thank you for responding. I did try NAC. It was in some Milk Thistle that I bought and it made me sweat really bad. I felt bad on it too. It seemed to bring the swelling of my liver down because I didn't feel that pressure anymore, but I just couldn't deal with the bad feelings it was giving me. Someone here said that it might have been busting open cyst form.
-------------------- The advice I give, should not be considered medical advice. My opinion comes from years of research and experience. Posts: 233 | From Somewhere | Registered: Sep 2009
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My primary thinks there is something else going on and I agree with her. She does think I have Lyme but since my legs are wobbly and weak and I am in excrutiating pain, she prescribed me a low dose of hydrocortisone. Only 10mg. She also prescribed me....I cannot think of the pain med name right now, but it has hydrocodone and Ibuprofen in it. I need the pain to stop. I cannot go on like this anymore. It's getting worse and some days, I can barely walk.
-------------------- The advice I give, should not be considered medical advice. My opinion comes from years of research and experience. Posts: 233 | From Somewhere | Registered: Sep 2009
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