No blood clots. But I did have to have my PICC replaced. Some how it became dislodged and was curled up high in my chest. The x-rays looked pretty coolTo replace it they just pulled the old one out and shoved the new one in. Easy peasy
Lyme Discussion
- Thread starter hotcoffee
- Start date
No blood clots. But I did have to have my PICC replaced. Some how it became dislodged and was curled up high in my chest. The x-rays looked pretty cool
I think you're ready for child birth now.
Oh hell no!
hotcoffee
New Member
Not on Rosephin [unless what I'm taking is a generic].... but I did have really bad chills a couple of hours after infusion for about a week early in January.... it went away tho....
Have you felt like you have bugs crawling on your skin or have you felt like there was a trickle of water or blood running down you leg when there's nothing there? That went away after about a week too....
Now I'm getting migraines but the tennitis is quieter....
lisa8439
New Member
hotcoffee and dowhat - do you have the line in your arm or chest? I don't know where he is going to want mine... does he let you pick? (we all have the same doc...) We talked about IV abx at my last appointment and I know that he is going to tell me that they are my next step.
I'm just ready to feel better - I get a 100degree temp most nights just out of the blue, and it does suck so I feel for ya dowhat. I remember herxing when I did this the first time lyme reared its ugly head, and it is no picnic. I didn't have kids then and I had taken a leave from my job, so I spent most of the day 'out of it' with anxiety meds...
I can't do that this time...
How long do you both have to do the IV for?
I'm just ready to feel better - I get a 100degree temp most nights just out of the blue, and it does suck so I feel for ya dowhat. I remember herxing when I did this the first time lyme reared its ugly head, and it is no picnic. I didn't have kids then and I had taken a leave from my job, so I spent most of the day 'out of it' with anxiety meds...
I can't do that this time... How long do you both have to do the IV for?
Jameo
What?!
The itches
Had them last week. I thought I was having a reaction to new laundry detergent. Then my nurse told me if I was itching from head to toe, it wasn't the new detergent. She told me it was most likely the dead little Lyme bugs getting outta my system 
Now I itch all over again just thinking about it!!
I have a Groshong, which is the tube in your chest.
I have had it since Nov.
Since we have the same Dr. he will want you to get the Groshong. He works with a Surgeon that works out of Calvert Hospital.
How long for IV Antibiotics?
Until you have no more symptoms, or until your insurance stops covering it.
Hope that helps.
Chasey_Lane
Salt Life
She told me it was most likely the dead little Lyme bugs getting outta my system
Like real dead bugs?
I had no idea!!
hotcoffee
New Member
I have a Hickman Central Line.... it goes into my chest....
I got mine at Calvert too... It's an ugly white tube....
but it beats having to have a needle stuck in me.... and it's actually easy enough to hide.
Tonight my bones ache and I've got a major headache yet again..... bummer....
I got mine at Calvert too... It's an ugly white tube....
but it beats having to have a needle stuck in me.... and it's actually easy enough to hide.Tonight my bones ache and I've got a major headache yet again..... bummer....
ShyGirl
Active Member
I used to get chills, even when I allowed plenty of time for the solution to thaw out. I would administer mine once a day, just before bedtime.
I think I got more chills from the other solution (heparin?) that you use to flush the line, than I did from the antibiotic itself. I ended up wearing a thermal top and a sweatshirt to counter the chilliness.
I didn't notice the light-headedness in my sleep, but had nausea and mental fog the whole time I was taking the antibiotic.
lisa8439
New Member
Thanks Dowhat that was helpful... sounds pretty much like what is going to be going on with me. He said that he wanted me to have the chest port and expected me to be on the antibiotics for a long time... I said 'so about 6 months' and he just kind of looked at me and said something about how that would be really 'undertreating' it.
I've had the line in my arm - I know the drill with lyme (though this time I have a co-infection that's a parasite that is really 'bugging' me (sorry, had to use the pun). He mentioned something about a surgery-type procedure to put the chest port in - do you have to stay overnight? Can it easily 'come out' or dislodge or whatever? I have young kids who love to hug... that will be an adjustment for them, and I know there will be slip-ups no matter how hard they try... I'm terrified that one of them is going to rip the thing out of me by accident!
The thing I hate about lyme is that it never really goes away (as per the doctor and many recent studies anyway) and it is like a systemic thing that you treat - then it lies dormant in your system until some huge stress or trauma 'wakes' it back up. Then you've got to rinse and repeat, go through the same sh!t all over again... as I am finding out now, 8 years after I was first diagnosed with it (probably close to 10 since I was actually bitten).
the doc. mentioned a movie (doctumentary) about lyme - has anyone seen it? It looks like one of those things you can only see at a 'screening' right now - I don't know if they will release it down the road or not... shame we can't all get together and set up a screening at the base theater or something. I know you can rent it out (just like for birthday parties) and they allow you to bring your own tape (and the site for the movie lets you get a copy for a community screening... you probably have to return it in so many days). I know not everyone has access to the base though... but I can't think of another place like that to do it. Library maybe? It would have to be smaller and I know those rooms fill up sort of fast...
I've had the line in my arm - I know the drill with lyme (though this time I have a co-infection that's a parasite that is really 'bugging' me
(sorry, had to use the pun). He mentioned something about a surgery-type procedure to put the chest port in - do you have to stay overnight? Can it easily 'come out' or dislodge or whatever? I have young kids who love to hug... that will be an adjustment for them, and I know there will be slip-ups no matter how hard they try... I'm terrified that one of them is going to rip the thing out of me by accident! The thing I hate about lyme is that it never really goes away (as per the doctor and many recent studies anyway) and it is like a systemic thing that you treat - then it lies dormant in your system until some huge stress or trauma 'wakes' it back up. Then you've got to rinse and repeat, go through the same sh!t all over again... as I am finding out now, 8 years after I was first diagnosed with it (probably close to 10 since I was actually bitten).
the doc. mentioned a movie (doctumentary) about lyme - has anyone seen it? It looks like one of those things you can only see at a 'screening' right now - I don't know if they will release it down the road or not... shame we can't all get together and set up a screening at the base theater or something. I know you can rent it out (just like for birthday parties) and they allow you to bring your own tape (and the site for the movie lets you get a copy for a community screening... you probably have to return it in so many days). I know not everyone has access to the base though... but I can't think of another place like that to do it. Library maybe? It would have to be smaller and I know those rooms fill up sort of fast...
Jameo
What?!
Like real dead bugs?
Not really, it's actually a bacteria. They are called lyme spirochetes. But no matter how you look at it, it's
and makes you itchy just thinking about it
Jameo
What?!
Thanks Dowhat that was helpful... sounds pretty much like what is going to be going on with me. He said that he wanted me to have the chest port and expected me to be on the antibiotics for a long time... I said 'so about 6 months' and he just kind of looked at me and said something about how that would be really 'undertreating' it.
I've had the line in my arm - I know the drill with lyme (though this time I have a co-infection that's a parasite that is really 'bugging' me
The thing I hate about lyme is that it never really goes away (as per the doctor and many recent studies anyway) and it is like a systemic thing that you treat - then it lies dormant in your system until some huge stress or trauma 'wakes' it back up. Then you've got to rinse and repeat, go through the same sh!t all over again... as I am finding out now, 8 years after I was first diagnosed with it (probably close to 10 since I was actually bitten).
the doc. mentioned a movie (doctumentary) about lyme - has anyone seen it? It looks like one of those things you can only see at a 'screening' right now - I don't know if they will release it down the road or not... shame we can't all get together and set up a screening at the base theater or something. I know you can rent it out (just like for birthday parties) and they allow you to bring your own tape (and the site for the movie lets you get a copy for a community screening... you probably have to return it in so many days). I know not everyone has access to the base though... but I can't think of another place like that to do it. Library maybe? It would have to be smaller and I know those rooms fill up sort of fast...
The movie is Under Our Skin. Under Our Skin: An Infectious New Film I have a copy. Very interesting movie. There is a yahoo Lyme support group that is talking about a possible viewing. CalvertCountyLyme : Calvert County Lyme Lots and lots of good info being passed around in there!
lisa8439
New Member
cool! I would LOVE to see it. I am interested in one thing though - having seen the movie, does it really 'accurately' portray what someone with lyme goes through, or does it really gravitate towards the extreme (for drama/interest)? And is it really informative - i.e. does it explain what and how lyme affects the body?
I'll admit, I'm a bit afraid that they will keep reiterating the entire 'CDC guidelines suck' angle... while I totally agree that the CDC guidelines are bull%$#% I hope that they focus more on telling the story of lyme and the people who have it - and getting people to realize for themselves that the CDC guidelines are bogus based on the suffering they have seen, rather than just being force-fed a line... if that makes any sense.
Thanks for the links - I'll check both of them out and join that yahoo group... I don't think that St. Mary's has anything, right? I'd love to make that lyme group at CMH but it is just at a bad time for me... I'm getting the kids to bed then, and coming from St. Mary's it is just too much on a school night. *sigh*
hotcoffee
New Member
I use this support site more.... there seems to be a wider membership and more information.... support group
Jameo
What?!
I found it to be very informative. It's not dramatized. Overall it's a good summary of Lyme. How it effects lives, the BS with insurance companies. I think it does explain some on the CDC guidelines, but it doesn't shove any info in your face.
I don't think St. Mary's has anything yet.
Jameo
What?!
MD junction is very good too. The Calvert Lyme yahoo group is mainly for the support meetings held at Calvert Hospital but everyone is welcome to join and share their stories.
Jameo
What?!
Are you doing the rocephin twice a day now?
I saw my doc monday and told him I've been feeling great lately. Pretty much symptom free! He said he wants me to be great for 2 months. Next month he'll check my immune system levels and if they are good, maybe just maybe take me off the IV abx
:crossingfingers: