I'm on 250 mg levaquin 4 days a week, 3 weeks per month. It still seems like too much. The good thing about it is that my severe muscle spasms are reduced to almost none, but dear God, I'm HURTING.
I told my husband I really think I'm dying. I'm dizzy, nauseous, but the worst symptom is it feels like I have burning glass shards in every cell of my body. I feel like the burning shards are being carried around in my blood vessels. I also have a massive headache that starts behind my eyes and extends down the back of my neck.
I know levaquin has some really bad side effects but I DO think I need it because cipro and rifampin didn't do a thing for me. Levaquin seems to be the only drug that stops my terrible all-body muscle spasms. I'm just so miserable and felt like venting.
I talked to my sister today and she asked me if I've bought my cemetery plot yet. She was serious. She wants me to be sure I'll be close to our mother when the time comes.
How depressing. Posted by lymeladyinNY (Member # 10235) on :
I guess I'm in the wrong forum - this is not really a medical question. Hope no one cares.
Posted by Health (Member # 6034) on :
This is in the right forum I would say.
I am on Rifampin, and I am sick. I know or I think I have felt like you, I wanted to commit suicide. I know the feeling I think,
It is horrid, I know, and I dont think one shoudl have to feel that way, for so long, if it is once in awhile, then ok, but not each day,
possibly the dose is too high?
Someone else will come around to talk to you, they always do, that is what is so great about this place. they have been where you have, and they can
comfort you but letting you know, by saying...
HEY, I have been there and this is what it was for me, maybe you too.
Trish
Posted by Cobweb (Member # 10053) on :
I've never done levaquin but doxy and mino do me in-so I refuse to take them anymore-IV Rocephin seems to have done the most for me-and I just toughed out two weeks of Flagyl-which actually hasn't been as bad as previously.
Dizzy and nauseous are so not fun and scary when they are unrelenting. Hope things improve for you.
Carol
Posted by bettyg (Member # 6147) on :
hi lady; wow, you've been knocked for a loop haven't you? so sorry to read your post and your feeling like dying.
sister had bad timing but her sincerity was real.
may the rest of your weekend go much better for you! thoughts, prayers, and Posted by Geneal (Member # 10375) on :
Dear LymeladynNY,
I am so sorry to hear you are feeling so poorly.
The rifampin I am on is almost doing me in....
I tried levaquin but had such incredible insomnia and heart racing....
I get terrible leg and foot cramps nightly with the rifampin, plus bladder spasms too.
This treatment is NOT for the faint of heart...
The comment your sister made, sounds like something my sisters would say,
Before adding what they want me to leave them.
You hang in there. It is so hard to see the light at the
End of the tunnel when you are surrounded by black.
Have faith...Believe that it is there and your dark days of pain and despair will come to an end and you will get better.
I am praying for you.
Hugs,
Geneal
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by Tincup: FYI-
1. We do NOT put anyone in jail or charge fines for posting in the wrong section. If we did.. I would be serving a life sentence and would owe more than the national debt.
That's true!!
Hey Lymelady....I hope you can get off that Levaquin soon. It sounds horrible. Is depression one of the side effects?
I hope you turn the corner SOON!!! We hate to see you so miserable!! lady Posted by kelmo (Member # 8797) on :
Tincup...I see you are not accepting private messages. Your response to that hurting woman put a knot in my stomach.
Lymelady, I hope you return, you need to be here and get support. The cure for this disease is as bad as the bug itself, sometimes. But, we're here to ride this journey with you.
Kelmo
Posted by polar blast (Member # 9142) on :
I am about to start levaquin..I used it about two years ago and I could NOT take the wierd dizzyness..is is very hard to take..I have not started out yet on it because it really stirs things up..you may want to switch to cipro..that is what I may do..I cant afford to feel like that.. eric
Posted by Tincup (Member # 5829) on :
Sorry you are feeling so bad.
I hope you feel better soon.
Posted by lymeladyinNY (Member # 10235) on :
To those who are supportive, thank you. I feel some better today after sleeping the day away.
What I don't understand are the comments about Tincup's response?
It must have been bad because I don't see it here.
Thanks to all, but I may not be on the board as much as I was. I just don't feel well.
Posted by Lymetoo (Member # 743) on :
Tincup uses humor to try to cheer people up. Some took it the wrong way. I think lymelady would have seen the humor and chuckled! Just my humble opinion! Posted by egotlyme (Member # 11951) on :
I am new to this, but I would like to let you know that I am praying for all of us. I am so sick these days.I was bitten by a tick 11/05 and it wasn't diagnosed until 05/06.I've only been given 14 days of doxy.
I have been back and forth to my doctor and they swear my illness is all psychological. I can't sleep at night, all my joints hurt, I'm dizzy,nauseaous,and just fatigued.
I don't know of any llmds here in Ca. I hope I can find the resources that I need from this site.
Again, I am praying for all of you and ask that you do the same for me. God bless all of you and hope that there is a healing in the mix for all of us.
Posted by clairenotes (Member # 10392) on :
egotlyme -- from what I have read here on lymenet, there are some good LLMD's in California. Did you post a request for names in the Seeking Doctors forum?
You also might PM JillE. She may be of some help as she lives in the same area (I think that is what I remember).
People can and do get well, but the process can be quite difficult at times and may involve a certain degree of trial and error. I really believe that when one door closes another will open, usually, in the form of a change in dose or a new medicine or remedy that is better tolerated, etc. We all need to keep thinking positive thoughts.
Claire
Posted by Tincup (Member # 5829) on :
Hey there,
Glad to see you came back! I think folks were afraid I said things that were insensitive and that is what kept you away and you were upset about it.
Because of their fears and comments I deleted my posts in the event you thought I was being nasty too.
Just to ease your mind... I was goofing around and said stupid stuff like the laws of Roostertown, Texas (no such place) say that if you post in the wrong section again on the board you would have fines up to $500.00 to pay... and would have to go to jail for up to 5 years. (I HOPE you know that isn't true!! I was kidding.)
I also said you would be punished by Lyme Net for not putting your post in the "Most Depressing Post for a Saturday Night Section" on the board... which of course there is no such thing.
And by posting in the Medical Section -which IS exactly the place to post this by the way- you would have to go to your room.... and you wouldn't be allowed to have any ice cream for at least 1/2 of a day.
Oh.. and of course I made sure you knew that I am a good girl and I NEVER post in the wrong section.... HA!
As Tutu and others know... I am actually the WORST about doing that and I am the first to admit it... so my comments weren't meant to be mean... not at all.
My point was... I am sorry you were feeling so down in the dumps and although I had no medical advise to offer off the top of my head.. I did try to let you know you weren't alone last night.. and that someone did care.
Sorry it wasn't pleasing to others.. but I really didn't mean it to be rude .. and I don't think I ever have purposely said something ugly and hateful to someone who was truly feeling this bad. Sorry my message was misunderstood.
Oh... I did reply to your activist (letter writing) post over in the General Section right before I posted here at this one last night.. so be sure to check it too.
Feel better soon.. little baboon!
Posted by Lymetoo (Member # 743) on :
***I don't know of any llmds here in Ca. I hope I can find the resources that I need from this site.***
Post over in Seeking a Doctor.
**Again, I am praying for all of you and ask that you do the same for me. God bless all of you and hope that there is a healing in the mix for all of us. ***
I am new to this, but I would like to let you know that I am praying for all of us. I am so sick these days.I was bitten by a tick 11/05 and it wasn't diagnosed until 05/06.I've only been given 14 days of doxy.
I have been back and forth to my doctor and they swear my illness is all psychological. I can't sleep at night, all my joints hurt, I'm dizzy,nauseaous,and just fatigued.
I don't know of any llmds here in Ca. I hope I can find the resources that I need from this site.
Again, I am praying for all of you and ask that you do the same for me. God bless all of you and hope that there is a healing in the mix for all of us.
Posted by lymeladyinNY (Member # 10235) on :
Thanks for the explanation, Tincup.
I still feel crappy tonight.
Good night, All!! Posted by bettyg (Member # 6147) on :
hope your health turns around soon! Posted by Dave6002 (Member # 9064) on :
egotlyme,
Definitely you need to fire the doctor and seek an LLMD.
Staying with the duck just waste time and deteriorate your health.
Posted by kelmo (Member # 8797) on :
Yes, see a good Lyme doc. It made me so sad to hear how much pain you were enduring. I watch my daughter in pain, and it breaks my heart.
But, she is herxing, and that is pain with a purpose. Just suffering without moving forward is hopeless.
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