Topic: Reporting from the IV line. A Cautionary Tale
Cobweb
Unregistered
posted
Ali- I am sorry to hear of your on going struggles with this whole process.
Fortunately I got my authorization in writing-good ole hard copy black and white.
I do not remember the pain you mention when stopping Rocephin.
The Omnicef doesn't give me a headache per say- but it does feel like the inside of my skull is sunburned. Now only a lymie could understand that sensation.
Supposedly the brain itself does not feel pain-but something in our heads sure does get fired up. Anyway- I suspect it is a side effect of the drug, but I try to tell myself it is the ketes getting fried.
We had a simple Christmas-the more laid back the better I say. I absolutely did not should on myself this season.But I did use real dishes for dinner, as opposed to the paper plates I used at Thanksgiving.
And I plan for a quiet New Year. Me and my recliner and my little dog, Ash.
AliG
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Member # 9734
posted
Calling all Cobwebs!!!!!!
I hope you & Ash had a great New Year celebration. Where have you gone?? We're worrying about you.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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AliG
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Member # 9734
posted
The letter was not refusing to pay for the infusions, just for the labwork from the Home Care Company. I misunderstood the letters
They paid that too(when I finally called ) and didn't give me a problem, because I had no say where the blood was sent.
GOOD NEWS!!!
Ali
[ 09. May 2008, 08:58 AM: Message edited by: AliG ]
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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Cobweb
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posted
Hey AliG-boy was I surprised to see this thread resurrected-glad it's not my Resurrection-I'm not ready.
I'm hanging here and there-but not around IV poles or anything like that.
I was actually off treatment for two months-and then what should appear to my disbelieving eyes,
but a nasty ole tick stuck deep in my thighs.
Actually not my thighs-it just rhymed with eyes.
It was embedded in my stomach to the extent it had to be carved out in the ER. ACK Infected , inflammed, painful, with streaks spreading out from it-very traumatic.
Back on oral Doxy for 6 weeks, which bummed me to no end. But I am feeling better-actually dealing with "other issues"
Such as grief.
Sunday, Mother's Day, May 11th, Barbie's Birthday, and the day of her Memorial Service 4 years ago.
Like all the planets lined up-the alignment of gravity pulling me into an overwhelming sorrow.
I think a part of me saw it coming, but it didn't all come together until a few days ago. I'm glad I finally glimpsed the trajectory of the sucker punch- not so I could avoid it-but so I could turn to face it head on.
I spent the day making a CD of the music we sang at her service. I have been listening to it over and over.
Sometimes when one is trying to deal with the death of a child-little else matters-not even lyme disease.
So there you have it! Thanks for asking, friend.
As for me and my house, we will serve the Lord. Carol
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lymemomtooo
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posted
Hey Webster my friend. Missed your smiling face last night at the support meeting. We had 47 counting the committee. A good attendance considering the weather..
Hope you get thru this weekend ok, along with the next couple of weeks. Hugs lmt
Posts: 2360 | From SE PA | Registered: Mar 2004
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Cobweb
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posted
Hey Godzilla Tick! I was at a Compassionate Friends meeting , for bereaved parents. Sheesh, I feel like I'm beating a dead horse here-oooo bad choice of words.
I was aware of the conflict for a while-but I'll be darned if I can respond to anything until it is right in front of me and by then it's usually too late. Sorry I didn't let you know.
AliG
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Member # 9734
posted
OH CR@P CAROL!!!!!
How many times do I have to tell you not to bellycrawl through the grass!!!!!!
I can not even tell you how sorry I am to read this post.
Not only do you deal with these stupid-arsed TBDs, you are trying to cope with every good mother's worst nightmare.
I am SO sorry that this is all converging on you at the same time. How awful.
I realize that there is likely nothing anyone can say to lessen your pain, only to tell you that we love you and are here for you if you need us. I wish I could give you a big hug.
You are such a good-hearted person. I often wonder whether people with good hearts would have the same compassion & empathy for others, if they had never known pain & suffering in their own lives. I think it is the emotional pain that makes us able to feel for others who suffer.
I have been told, and I choose to believe, that we agree to accept the course of our lives before our souls descend into our bodies and our life begins on earth. We choose to accept whatever tragedies occur so that others may learn from or be tested by their interaction with us.
I think much of it has to do with patience, kindness, compassion, empathy and the opportunities we have to reach out to each other or turn a deaf ear.
You will be with your daughter again when it is time. Her "contract" was just fulfilled sooner than yours and when you have served your purpose here on earth, for the agreement that you made, you will join her.
I know it stinks but you still have work to do and people like me still need you. When you are done you will live on in peace and joy with all of your loved ones.
Know that there are a great many people who love you. Some whom you've never even met are bettered by your existence and are thankful to God for sharing you with us.
This may sound like a bunch of drivel, but just know that I am very thankful to be able to consider you my friend and I do love you.
I never would have made it through IV without you! (or a lot of other things too ) Thanks for always being there for me and if you need someone to talk to, yell at, cry to, PM me & I'll give you my number.
I'll even promise to try my hardest to resist the urge to interrupt you (so I don't forget thoughts) and try not to go off on strange tangents (attention span of a gnat right now). I'll try especially hard to follow the conversation (neuro-cognitive & concentration problems).
For you, my dear, I would pray that God would give me the ability to be there, should you need me. I also pray that God gives you the strength you need to carry you through this trying time.
hugs & prayers, Ali
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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Cobweb
Unregistered
posted
This is kind of fun-highjacking our own thread!
You said "Her "contract" was just fulfilled sooner than yours and when you have served your purpose here on earth, for the agreement that you made, you will join her."
I had a "near miss" experience the other day, walking back to my apartment with my little dog Ash .(BTW- I can't remember what I did on New Year's Eve-and it wasn't because I drank too much)
We were walking on the sidewalk by the parking lot. Just me and my dog. A couple got in their car , but instead of backing out of the parking slot, the car lunged forward-just as we passed in front of it!
The bumper of the car scraped over the cement berm, then the wheels hit it and came to a sudden stop-a foot from me.
They were extremely apologetic, and I was extremely close to fainting it scared me so bad.
But alas, after getting over the shock of coming so close to getting run over-but NOT getting run over- I came to the conclusion God was trying to reinforce the message that my time is not up yet.
Barbie more than fulfilled her contract. Guess I still have some work to do on mine. It was a privilege and a blessing to be her mother.
No bellycrawling through the grass? But I tucked my pants into my socks. And I wore my sunglasses so they wouldn't recognize me. Humph. And I was crawling really fast!
But not to worry-this is how I get from A to B now.
lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
I will send some depends. You probably needed them for the almost car crash.
There is a plan, I do not understand it yet, but think you will be around for a while yet. You would not have had so many struggles had there not been a plan. You know at the least that you have helped others.
The monthly dinners are off since the restaurant is closing. I think we need to find another place in the area that supports non-profits. Look around for us if you have some spare time.
Call me. Let's do lunch sometime soon. lmt
Posts: 2360 | From SE PA | Registered: Mar 2004
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posted
I was shocked to read this. You wrote: I have been told, and I choose to believe, that we agree to accept the course of our lives before our souls descend into our bodies and our life begins on earth. We choose to accept whatever tragedies occur so that others may learn from or be tested by their interaction with us.
I didn't think anyone else thought about life and our souls the way I do. And what's funny is that the person who gave me this philosophy which I believe hands down now, was a psychic. (dont believe in all psychics) but I went to 2 different ones and they BOTH told me that I have an old soul and that I keep being reborn and will keep being reborn until I find true happiness. I definitely do think that we have a say in if we want to have the life we will have before we are born, and if it is a harder life then some so be it cause theres a purpose and a reason. Ok I'm done talking religion,,just wanted to share my thoughts
oh yeah and my mother saw a psychic a few months back who actually told her that Lyme was the reason I was so ill. That's one of the main reasons I started doing research on it and found out I had it. She told my mom I would be sick for awhile but would get better. Lets hope shes right.
Posts: 370 | From NJ | Registered: Dec 2007
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AliG
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Member # 9734
posted
I WANT ONE OF THOSE!!!!! Did you get your insurance to pay for it?
After you had near pooped your pants, did you by any chance hear "PSYCH!!" followed by hysterical laughter, in your head?
I know exactly what you mean. It's almost like, "just in case you were wondering....NO, NOT YET!!!, now go get busy!".
I sure am glad they found the brake before the car found you!
That could have been a wake up call for the driver, as well. Perhaps they were too caught up in their own little world and hadn't realized the impact their actions/negligence could have on other people's lives.
I don't think the nurse who unloaded a line of air into my shoulder will ever do that again. That could have been a wake-up call for her OR a message for me. I don't know because I don't remember MY contract. (like the way I tied this back in to the thread? )
I think we just have to roll with the punches, even though some are much more painful than others.
They say "That which doesn't kill us makes us stronger." (I'll bet your legs got stronger jumping out of the way.) I think you are one of the strongest people I've known and I thank you for sharing your strength and pulling me up out of the dirt when I am feeling discouraged.
---- I just came back to see if you replied & found out that I never finished & posted this reply. These TBDs really stink!!! -----
I am sure that it was also an honor & a privilege for Barbie to have YOU as a mother. I pray that she will always remain with you in your heart and that she will watch over you & help you, should you need her intercession. (like when cars try to run you over )
Ali
[ 13. May 2008, 09:08 AM: Message edited by: AliG ]
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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AliG
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Member # 9734
posted
Carol,
I just wanted to let you know that you've been in my thoughts & prayers all weekend. You still are.
Thanks again for being the wonderful person that you are.
I feel that it an honor & a privelege to consider you my friend.
hugs & prayers, Ali
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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bettyg
Unregistered
posted
,,,carol, saw this LONG post, so read only the last day or 2 here on you.
yes, you went thru rough times on mother's day and Barbi's 4th anniversary of her passing; so sorry and praying you will come out of heart-felt sorrow for your precious daughter.
just wanted you to know i hadn't forgotten my wonderful POET friend who LIFTS so many spirits in your kind, caring, thoughtful ways.
darn it, i read where you were bitten again!!! those little suckers
carol, sending my love/prayers to you/yours...
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Newish, at least. I've been doing IV Rocephin via PICC line for almost 8 weeks now. I already miss the showering. My first one sprung a leak a week in, but this one seems to be holding steady.
It's weird, it seems like when I first started on it, I immediately noticed a significant change. Since then, nothing. Three days in, the stiffness and pain I had in my legs is almost entirely gone. Today... well, I feel about the same. Legs are still pretty good, fatigue is still not even trying to get with the program.
This past week I think maybe I'm herxing, because I'm perma-exhausted. I haven't slept this much since I had mono.
I think I need to start keeping better track of my symptoms. I'm pretty terrible at keeping up with that, so I really need to find a good easy system.
Any encouraging news from our IV graduates?
Posts: 306 | From Brownsville, PA | Registered: Jul 2007
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Cobweb
Unregistered
posted
Don't expect much in 8 weeks. I would have been a bit discouraged if I had had to stop after 8 weeks.
The shower's were a bit of a nuisance trying to keep the picc dry. I wound up holding onto the shower curtain rod for two reasons-to keep the arm out of the way, and for balance.
But , oh the JOY of finally being able to shower, as long and as much as I wanted to was worth the wait. Lather Lather Lather
Over all the IV was worth every drip! I'll check in on you every once in a while to see how you are doing.
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posted
As annoying as it's been, it's been completely worth it. Even when I had to get it replaced. Even the 6 hours of driving to get it put in.
I just talked to a nurse at my office last week though, and she said that they may be taking that out at my next visit, which would be a total of 12 weeks on Rocephin.
She didn't say why, I hope my liver isn't exploding or anything. We'll see on the 16th.
Posts: 306 | From Brownsville, PA | Registered: Jul 2007
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Cobweb
Unregistered
posted
Do you have some place local to go if you experience any problems with the picc?
And I hope you are taking Actigal for gallstones?
I don't think Of PA as a third world country-why do you have to drive 3 hours to and from(for a total of 6) for a picc line?
I hope you can keep it longer and your innards are holding up to the meds, but I'm glad you feel what you have received has been of benefit and not too traumatic.
posted
My LLMD is about 2.5 hours away. There's a somewhat closer one, in Morgantown, but she isn't taking new patients. For some ridiculous insurance related reason, I had to go to their local hospital to get the PICC placed, instead of one close to me.
Which may be just as well, since I've gotten the run around from our local doctors. I was told if the line had any problems, to go to the local ER. So when it was leaking, that's what I did. They said they couldn't do anything with it (at least, not at 6:00 at night), but that I'd definitely have to have it changed. They put in a port in my hand, so I could get my antibiotics that night, and referred me to a local doctor. When I saw him the next day, he said it was fine, and to keep using it. He didn't even re-dress it after taking the bandage off to check it out, just stuck some gauze in it and sort of taped the top! I called my doctor to tell him about the ordeal, and ended up having to drive up to Hermitage yet again to get it changed anyway. It was all pretty ridiculous.
But yes, the benefit has outweighed even all these shenanigans.
Posts: 306 | From Brownsville, PA | Registered: Jul 2007
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posted
almost two weeks, and the leaking at the insertion site is slowing down
Had to add a second sticky wing holder- the original one at the end of the picc tubing and one at the insertion site where the tubing comes out of my arm. This has stabalized the tubing enough that I think it has started to heal around the entry area.
Tape was eating me alive and wasn't keeping the tubing in place.
Leaking is really a bother and hard to keep the area dry & germ free- I hope this is the answer.
posted
My picc was stictched in place, so I didn't have to rely on bandaging to keep it in place.
Now I am trying real hard to remember what else Nurse K did to keep it anchored???? Oh it wa a way of wrapping the tape around the tubing when she changed the bandage.
Hoe to explain it-a thin strip she wraped around in the shape of the magnetic ribbons on cars , then she taped over that.
Ladycakes- Ha! seems the medical personal are so cavalier and casual about matters that seem so important to us.
Sometimes I have this diabolical thought that doctors like to add a little excitement to their lives by playing with ours!!!!
Anyway- I could not tolerate the original bandaging materials used which were see thru-so we had to switch to a brand where the site was not visible at all times.
But I would occassionally take a peak myself-fortunately did not let any germs in. My own form of risky behavior.
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posted
Wow- This is a long thread! I am getting my Picc line this week and will start infusing Rocephin. I am petrified!
Actually-trying not to get too excited that this might finally help my brain.
I am hoping and praying that it helps my neuropathy, headaches and brain fog. I have been on various oral abx for 7 months with no improvement.
Thankfully I have a wonderful nurse friend who is going to be monitoring me but I have to go to hospital out patient to get the Picc line inserted.
I have already had 15 IVIG infusions over a 3 month period so this should be a piece of cake right????
I guess this isn't the best time of year to be getting this with the trouble showering in the 9o degree heat but I will do ANYTHING to start feeling better!
Thankfully I have good ac in my house and I will just have to put my legs in the pool if I feel well enough to get in it!
Cobweb- your nurse stories were funny. I have a few of my own!
Laurie
Posts: 256 | From long island, new york | Registered: Feb 2008
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Cobweb
Unregistered
posted
LaurieM-"I am petrified!" This too shall pass.
And here's hoping the Rocephin,too shall pass -thru the brain barrier , forward march...CHAAARGE
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posted
I joined the rank of piccled lymies yesterday. What fun! Not.
Took them 4 tries to get the danged thing in. But it's in.
Got my first dose of Rocephin too. No reaction, other than an ongoing case of post nasal drip. If that's all I get, I'll take it.
Expecting my care package and the nurse to show up today.
And it begins!
-------------------- If you don't know where you are going, any road will take you there. - Lewis Carroll Posts: 356 | From Body-PA, Mind-elsewhere | Registered: Dec 2007
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Cobweb
Unregistered
posted
Glad you could make it Curi !
This is the rest of the story I didn't necessarily want to tell you beforehand.
If it weren't for co infections I would be living happily ever after.
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It's been three months, which I know is short compared to a lot of you. I've seen a lot of improvement with it, and it's certainly gotten the ball rolling for me. I'm going to try going back to oral abx, and as doc said, I can always go back to IV if I need to.
I'm nervous/excited, so we'll see how it goes.
Posts: 306 | From Brownsville, PA | Registered: Jul 2007
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Cobweb
Unregistered
posted
I see you posted yesterday-everything go smoothly?
I literally had grown "attached" to my picc. It didn't want to come out. Nurse was pulling so hard it was taut.
I couldn't look. Ack. But of course, eventually it released. I thought of framing it. I was very fond of my picc.
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posted
you could have kept the last bit of info to yourself. haha <3
On july 7th it will be 4 months....power picc line 2g's once a day....halfway through, ran into doc problems, specialist in new york dr. h wanted it to stay in and go 2gs twice a day 4 days on 3 days on glutathione. Wow...really trying to get me to herx huh?
Its caused a mixup in the change of pharmacys/docs but I think it all happens for a reason. Im saving a bunch but still no insurance and every day this thing is killing me finacially.
But, Gotta be done right? I have such a fear of blood/needles, im happy to be where im at, although I would be excited to get it removed, dont want to think about the gory details..lol.
Congrats to everyone who has stuck it out with success! Its a tough thing to live with, Even with the super cool allen iverson shooting sleeves the team donated to me to cover my left arm in style! Posts: 30 | From Colorado | Registered: Feb 2008
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Cobweb
Unregistered
posted
"Even with the super cool allen iverson shooting sleeves ..." haven't a clue here, may get a chance to google.
But I know when it got to be summertime and short sleeves were back in season I was trying to think of how I could make a "picc line fashion statement".
Closest I got was wrapping one of those SURVIVOR thingy's around it. But it was too big and had to be pinned , and got all bunched up. Not practical.
Since I mostly used the cuff from white sweat socks , I looked for snazzier socks I could cut the cuff off of. but they just don't make fashion tube socks.
I agree-having the picc line pulled was just about as traumatic as having it put in. I was afraid I was going to need to have it surgically removed. Then SNAP and out it came!
AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
I used flesh-colored fishnet knee-hi's, with the feet cut off for stylish(IMO) summer fashion statement.
I think it was a little less attention-grabbing.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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AliG
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Member # 9734
posted
Started Biaxin today, ordered my artemisinin and awaiting the clearance for ROUND TWO!!!!!
No kitchen table midline for me this time. Going straight to the hospital for the PICC.
Wish me better luck this time
LLMD said he'll probably keep me on the Biaxin WITH the Rocephin this time around.
PLEASE LET THIS ONE WORK!!!!!
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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Cobweb
Unregistered
posted
Sorry Ali-I missed this last post.-yes I do wish you well with this next go around.
AliG
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Member # 9734
posted
Up for those starting IV.
I miss Cobby!
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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lymemomtooo
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Member # 5396
posted
Ali, so do I ..Hope she has a Happy Halloween...send her hugs from me if anyone is reading and in touch..lmt
Posts: 2360 | From SE PA | Registered: Mar 2004
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posted
Wow this brings back memories... I got a new IV pole yesterday - with wheels!!! I am so excited. I have one for the car, and one for home now - and I'm totally mobile...
When the delivery man came to the door last night with the pole in hand, I thought about this post. Glad to see it again.
Lymenet just isn't the same anymore.
-------------------- Sometimes when I say �Oh, I�m fine� I want someone to look me in the eyes & say �tell the truth�
posted
I think you might be ale to find Cobweb over at lymeneteurope. Me, I have a hard time being in today and tomorrow simultaneously...
Posts: 13171 | From San Francisco | Registered: May 2006
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AliG
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posted
This is still IMO some of Cobby's finest work. A definite Cobweb Classic. Bumping up for newbies.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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AliG
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Member # 9734
posted
up for IV newbies :-)
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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posted
Wow - haven't seen this thread in a while - makes me lonesome for Cobby - and hi to you too, Ali -
Posts: 13171 | From San Francisco | Registered: May 2006
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Cobweb has been posting recently at Lyme Friends (http://lymefriends.ning.com) Note there's no "www."
She was kicked off for awhile, but then the decision was made to let her back a few months ago.
So anyone who misses her can surely find her there.
I had never seen this thread! Posts: 4590 | From Midwest | Registered: Jun 2008
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posted
I did IV Rocephin for 3 months. I followed with orals. I felt pretty good for about 3 months. Then I relapsed. Despite not feeling well again, the Rocephin helped with the brain fog, and concentration issues.
Posts: 6 | From DE | Registered: Dec 2009
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AliG
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Member # 9734
posted
Hi Robin!
Sorry but I must have not have had e-mail notifications on or perhaps you posted before I remembered to edit my email address in my profile.
I've missed everyone too!
Last I'd talked to Cobby she was going to go back to another forum, not sure which but think it was one I hadn't joined.
That reminds me. I should really be touching base with her. I've been missing her too.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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posted
Hi Ali - I looked to see who brought up this thread today - I think Cob is still over at lymefriends. Wonder if she is ever going to publish this IV Chronicle?!
Posts: 13171 | From San Francisco | Registered: May 2006
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AliG
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Member # 9734
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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