I went to my PCP and told her my experience with my LLMD and gave her his orders/protocol. She agreed to follow it, thank god! I was so nervous about her saying it was garbage or whatever.
So, I'm going next week to see a surgeon for a consult to put a mediport in. Does anyone have any experience with a mediport? I'm really excited! Finally!!!!!!!
I will be on IV Rocephin and Flagyl for a min. of 3 months. I'm so hoping I get even just SOME relief! My whole body is aching so bad like a have the flu and I'm really weak.
I have an appointment with my Pain Mangement Dr and hopefully I can get something just a little stronger than hydrocodone. I've been on 2-3 pills daily for a couple years now. It doesn't seem to be working well. I don't like taking pain pills, but I have to. I cannot deal with this pain any longer as I'm sure you all are well aware of.
If you have any advice, I would be greatly appreciated. I will be on the following medication when infusing starts:
Diamox Urso Potassium CL 10MEQ ER Flagyl 500 mg 3 times daily Rocephin 2 times daily
Thanks again,
Mrs. Dizzy
-------------------- "don't ever write anyone off, you'll never know who or what they will become" Posts: 115 | From la la land | Registered: Apr 2007
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posted
it sounds like you have a solid plan there. I wish you the best of luck and hope sincerely that this helps you a lot!
I did not have a mediport. I had a Picc Line in the right arm for three months. I did well with it. Good luck with consulting the surgeon. You will be just fine!
Posts: 719 | From Delaware | Registered: Jan 2006
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Does anyone know if I'm going to have problems with the surgeon? I'm beginning to feel a little nervous that he's gonna ask a lot of questions and he's gonna look at me funny when I tell him about having LD. I don't know if I'm reading into this too much or not. I just feel like it's almost too good to be true, ya know?
Also, I got some probiotics, the refrigerated kind. Should I take only 3 per day or is it better to take more?
Thanks again!
-------------------- "don't ever write anyone off, you'll never know who or what they will become" Posts: 115 | From la la land | Registered: Apr 2007
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I am not familiar with the port. I have a PICC line. I am sure others will come along to help though.
As far as the surgeon goes, you don't have to tell him anything. He is just doing your procedure..really none of his business why your getting it.
I have a post from a few days ago about yeast and acidopholous. I wasn't taking nearly enough and I got a you know what..you know where..
Read that post..there is alot of info on what to take and where to find it. I was on the Rocephin for 4 days and let me tell ya..no one was lieing when the said the yeast can hit you fast.
I was only taking several million live bacteria a day. Now..I got a better brand and I take billions a day.
Good luck with everything. I hope this brings better days for you.
posted
I'm nervous......I just got a call from the Surgeons office (to put my mediport in) and they have a cancellation so I'm going to see him TODAY! Thank god for speeding up this process a bit, but I have so many mixed feelings. I'm sure everything will be just fine, I'm just so anxious.
Thanks KitKat...I ordered 2 other different kinds on the internet (I have 6 billion right now). I also ordered some vitamins after reading Dr B's guidlines. Thanks again for being so helpful!
Have a great day all!
-------------------- "don't ever write anyone off, you'll never know who or what they will become" Posts: 115 | From la la land | Registered: Apr 2007
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posted
Hi Mrs dizzy, I have a port. This is my second one. My best advise would be
DON'T DRAW BLOOD OFF YOU PORT!
No matter what they tell you! Only use your port to infuse, drawing blood back into the port can cause the build up of fibrin around the end of the tip of the cathater and a clot to develop. So, it's easier to do blood draws from your arm, and save your port.
Otherwise after the post-op swelling and briusing goes down, a port is a wonderful way to get well.
As you feel better you may learn to deaccess and then maybe access the port yourself so that you may bath and even swim in between doses of meds. I know that sounds unreal now.
Oh, very, very helpful.... after surgery..... Icepack for the first 24 hrs 20 min on and off.....or even 2 days..... It really helps the swelling and bruising and healing!
I wish you well! Posts: 663 | From NH USA | Registered: Sep 2004
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Never had a port just piccs and a groshong!!!
Best wishes*)!*)*!!
Rocephin did wonders for me*)!*)!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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I would have never known about the blood thing, geez thank god got this board, eh? I was originally gonna get the PICC line, however, a nurse told me that even though the mediport will leave a scar, it's better and safer. I'm not sure if that's really true, but I trust her.
Thanks for the info about the ice as well, I will do that!
Achey, are they going to put me under when they do this? I'm assuming yes, since I'm dealing with a surgeon.
CaliforniaLyme....that's so nice to hear about the Rocephin. I'm hoping this will atleast make me feel just 25% better. It's the Neuro symptoms that kill me. They make me nervous and totally disable me. I'm excited about this! Thanks again!
-------------------- "don't ever write anyone off, you'll never know who or what they will become" Posts: 115 | From la la land | Registered: Apr 2007
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posted
I have a hickman port. This means that the tube actually comes out of my chest and is not flush against my skin.
The benefit is that it last longer than a picc, it's made of a saline plastic, and it's needless.
The downside is that you still can't get it wet and you have a tube comming out of your chest.
My surgeon works with my LLMD and luckily he was in my network so everything worked out great for me!
However, the whole Rocephin part with infusions did not work out so great. I also must say that I disagree with the person who said don't use your port for blood draws. My doctor isn't a big fan of it, BUT as far as my port goes (and everyone is different) I've had my port since Aug 2006. I stopped using antibiotics between November and January (still kept up the maitence with flushes etc) and never had a problem. I also have always had all blood work done through my port. I think it's important to check your port blood and make sure ur good.
Maybe that is just in my head since all your blood is the same, but it's also nice that you don't have to get pricked.
I was knocked out for my surgery. I was pretty sick when I woke up but my recovery time was minimal. It really didn't hit me how sick I was till I looked down and saw it.
I wanted to do Rocehpin, but being 22 years old and looking down to find a tube in my chest, it was pretty terrifing. Kinda like you're really admitting your sick.
So ne wayz I hope it all goes well! Definately have someone go with you as you will NOT be able to drive home.
Good luck, Linds
Posts: 484 | From Burlingame, Ca | Registered: Sep 2005
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I don't know the difference (hickman/medi) but they both have port after them so I'm assuming it's similar. Thanks so much for the info and support, I can totally use it :-)
I will keep everyone updated, if interested...please let me know if my posts are becomming annoying, LOL!
Take care!
-------------------- "don't ever write anyone off, you'll never know who or what they will become" Posts: 115 | From la la land | Registered: Apr 2007
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posted
Dizzy, the first time, they put me out, full asleep, and it was a rough recovery.
The second time they only gave me as much anethesia as to make me comfortable, and the recovery was so much easier!!!!
I could hear the surgery, which didn't gross me out, but I'm just that kind of person, and they gave me meds to relax. They used local meds to numb the area. But without so much medicine in my system, the recovery was so much easier. So talk to the surgeon.
Also the second time, I had an interventional radiologist do the surgery, instead of a general surgeon. He had placed many ports and was very familiar with the particular details or port placement that my general surgeon who placed my first port was not.
The second time I had a mini port placed, because I am thin. The second port was also placed in my jugular vein instead of clavicular as the first, beacuse I had problems sometimes with the clavicular vein getting pinched between the clavicle and rib..another problem with thinner and smaller folks.
So, you will have an appt with you surgeon prior to the opperation. Ask lots of question!
And enjoy making them wonder how you know how to ask so many questions! Have fun getting well! Posts: 663 | From NH USA | Registered: Sep 2004
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Just wanted to tell you that I have been on Rocephin for 11 days and I already have improvement in my neuro issues.
So far, anxiety, insomnia, speech problems and headaches are about 90 percent gone.
I do oral meds for a year before this also.
Hope you get great results too.
I hope your doing okay...kit
PS..My LLMD says no blood draws from my PICC either. I guess it's basically a matter of opinion.
Posts: 655 | From Pennsylvania | Registered: Jul 2006
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Okay, so I met with the surgeon and it went well. He talked me out of the mediport. He said that it's really only good for Kemo patients and not really designed for daily infusions. He was also concerned that Home health care wouldn't know how to properly work it. Also, he said I couldn't do it myself (infusions) with the mediport.
He said the groshhong would be the best, he said it was the Cadillac of PICCS. I'm still weirded out and not sure if I made the right choice of lines. It's so confusing. Dr. C was very specific about what lines to use etc and I don't remember if the groshhong (sp?) was the a no no.
I have surgery scheduled next friday June 1st, yay! 4 days after my b-day, LOL!
Thanks for all your help, this can be way more confusing than I thought!
KitKat, that's so awesome to hear that the IV helped your Nuero symptoms! I can't wait!
-------------------- "don't ever write anyone off, you'll never know who or what they will become" Posts: 115 | From la la land | Registered: Apr 2007
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Boomerang
Frequent Contributor (1K+ posts)
Member # 7979
posted
Dizzy, I don't know anything about the port, but the Picc Line has really gone well for my hubby.
We worried and worried about it, but once you get used to it, it is fine.
I didn't know that about drawing the blood of the Picc Line though. They are scheduled to start drawing blood from the Picc line next week. Guess I'll ask the LLMD about that.
Amazing what I learn from this board!
Posts: 1366 | From Southeast | Registered: Sep 2005
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Cobweb
Unregistered
posted
My LLMD specifically wrote on my orders NOT to do blood draws from my picc line.
Picc line is on the inside of my left arm above the elbow. Home health nurse does blood draws every two weeks from right arm. Piece of cake.
Mine was inserted in a hospital, by a doctor in the "interventional radiology " department. Doc said they do about ten a month for lyme disease.
I do the rocephin 2xday for 4 days and 3 days off. On the 3 days off I still flush with heperin twice day and I take 325mg aspirin to avoid blot clots.
I am also currently doing flagyl for two weeks. Since I am dipping the flagyl in olive oil- it slides down real easy-no bitter taste.
posted
That's great news, dizzy!! Glad to hear that you're going to get some real help now!
I'm a bit concerned that you will be taking 1500 mg of flagyl per day. LOOK OUT!
You might ask your LLMD if you can begin with a lower dosage and work your way up.
Just my non-medical opinion. Flagyl is ROUGH!!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Cobweb
Unregistered
posted
quote:Originally posted by Lymetoo:
Flagyl is ROUGH!!!
I second that emotion. I take 500 3 x day. It has not been so difficult to handle this time around. 3 days killer headaches at first, since then just more tired, but have learned to take it easy.
posted
wow that's a lot of flagyl..that stuff knocked me back into a full relapse. Be careful! I started out on 500mg's totally thinking that I could handle it, cause I'm invinsible-haha but after two weeks of being DEAD I literally went into a full relapse which took several months to fix.
Just really be in tune with your body. Not everyone has the same reactions, but that was mine.
I am not sure what a medi port is and I know that a lot of people have piccs. I was totally all for picc lines and infact against anything else. This was of course before I met with my surgeon.
I know people whom have had great sucess with picc lines, but I also know people who have had horrible reactions.
My surgeon told me because I am younger (22) he thought I should go with the hickman port. It's made of a saline instead of a plastic. This adapts better to your body. Turns out I am allergic to certain types of plastics like tagaderm.
He also said that he had two patients who had picc lines and where the plastic turns over the shoulder (under the skin) it broke! They had to go to standford and have the plastic removed with a special tube and we all know how much Standford love lyme patients.
Also it's about the same amount of plastic in your body but because it's internal within the chest it's better protected. There are also no needles involved so there's less risk.
Ne wayz good luck with your picc line! I hope the Rocephin makes as much of a different for u as it has for me!
Best Wishes, Lindsay
Posts: 484 | From Burlingame, Ca | Registered: Sep 2005
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I have a mediport, it's been in about three years. I'm using it now for my second round of Rocephin and I easily give myself daily infusions. I've never had any problem with a nurse not knowing what to do with it. I have blood drawn from it at least weekly.
I've had no trouble at all with my mediport. In fact, if the infusion company uses the huber needles with the plastic disc (not plastic wings) holding the needle in, I don't really know it's there. The new (to me) system of supplying the IV drugs in vacuum sealed balls rather than bags with a regulator and an IV pole is great too if you can get it. Makes things much simpler.
You'll get the hand of this quickly. It's hardest at first, without doubt.
Oh, and the surgery to have the port put in really wasn't too bad for me at all.
monkeyshines
Posts: 343 | From Northern VA | Registered: Oct 2004
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They use a needle to tunnel a vein but after that there is not a needle left in you. That specific type of port is used often according to the doctor who inserted mine.
Supposedly you don't need to flush it with heparin..just saline. My LLMD and I talked about that and I felt more comfortable flushing with saline and heparin.
best wishes..kit
Posts: 655 | From Pennsylvania | Registered: Jul 2006
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about Flagyl: Maybe I will experiment with taking 1 to see how I feel, I'll call my LLMD. I re-read the bottle again just in case and it does say 1 every 8 hours (on his orders it says 3time per day 500mg). I've never taken Flagyl. Do you think I should try one today to see what happens? I'm suppose to take it when I start infusions (2 weeks on then 1 week off then 2 weeks on etc).
About the port: I would much rather have the mediport because you can shower and swim etc freely and you don't have dressings to change etc. I don't know why the surgeon tried to talk me out of it. My family member who is a nurse advised me to get the port. I will call her to see what she thinks, ugh!
Thanks for your help!
-------------------- "don't ever write anyone off, you'll never know who or what they will become" Posts: 115 | From la la land | Registered: Apr 2007
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posted
"About the port: I would much rather have the mediport because you can shower and swim etc freely and you don't have dressings to change etc. "
Dizzy: Just want to make sure you know that that's only true when you are not accessed. I'm infusing 7 days a week right now and so I only get a shower on Sunday night when I de-access my port, i.e., before the home health nurse comes on Monday a.m. to access it again for the week. You must be extremely careful not to get it wet or dirty when it's accessed.
You're right that when it's not accessed, you're free.
monkeyshines
Posts: 343 | From Northern VA | Registered: Oct 2004
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Boomerang
Frequent Contributor (1K+ posts)
Member # 7979
posted
kit, we're doing the same thing. Saline AND Heparin.......
Posts: 1366 | From Southeast | Registered: Sep 2005
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posted
Thanks for all your imput, again :-) I think I'm going to insist on the mediport, it has way too many pluses. It also can last years. I'm gonna call the nurse at my LLMD's office to confirm with her if I would be able to do it myself (the infusions) with the mediport. I would much rather this than the picc, the mediport doesn't use dressing and if I'm going back to work anytime soon (if I'm able) I don't trust the dirty building I work in with the dressing etc.
THanks again!
-------------------- "don't ever write anyone off, you'll never know who or what they will become" Posts: 115 | From la la land | Registered: Apr 2007
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posted
I agree that a port is more versitle and very easy to keep clean.
I have had one for 2.5 yrs and my teenage son had one for 8 months with no problems and he was very active.
i have learned how to access and de-access my port myself so that i have more freedom to get more exercise, and we did the same with my son so he could compete on a mtn biking team. He had severe neurocognitive and memory problems, but not motor problems.
My LLMD and local nursing service agreed that teaching us how to do home care was a good way to help us be healthy.
My son then taught his school health staff abt IV care and lyme disease, and his peers in his dormitory.
But getting back to choicing picc or port.... do what feels right for you!
I want the port. How hard is it to access? I'm sure that home health would be able to use it, I wouldnt see why not.
Is it totally under your skin? What I mean by that is, do you have to puncture your skin to do infusions? Or is it open a little? I dont know if that makes sense...lol
I really want the port, but the surgeon made me think I could not do it on my own. I'm pretty sharp and think I can handle it, plus the port lasts much longer and it just all in all looks like a better way to go.
Like I said, I would hate to return to work with dressing and all that. I need something thats a little safer than a picc as far as moving around alot and god knows all the germs at my job.
I just want to be sure I can do this on my own.
PS: I'm going to take a test dose of Flagyl tomorrow too, to see how I react.
-------------------- "don't ever write anyone off, you'll never know who or what they will become" Posts: 115 | From la la land | Registered: Apr 2007
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
Good luck dizzy! I think it's great you are getting to do this.
I have a question about ports. As I never saw this asked or answered...
After looking at Annie's pics on the other thread I wonder if the port interferes with wearing a bra. Seems it would be right where the straps are.
I was considering a port when it looked like I might have a shot at IV again. My previous attempts had been piccs. Still curious and might one day get lucky.
I wish you great success and the help you've been needing. I'm excited for you.
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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It's important that you point out your bra line to the surgeon before the surgery and then it's easy for him to place the port inside of where it might rub so it's no problem. Now, once it's accessed, you do have a dressing on it, and a needle and line with a cap on it.
The dressing is clear, so if you are wearing a t-shirt or blouse it really doesn't show especailly if you have a mini port and the right size needles so they lie fairly flat. Sweaters and shawls are good hiders too. Of course, scoop neckline will be out for a while.
But what I find, is just tucking the end of the cap of the line into my bra for hiding keeps things secure when I'm not infusing. So, in this case, I am fortunate to be a woman. At night a sleep with a shelfbra style tank top for the same reason.
Unfortunately guys have to tape the ends to themselves because to have it swing freely under your shirt loosens the dressing.
I have to access my port tomorrow morning. Maybe I can get my hubby to take photos if we have time and I'll send them on...I've been doing it myself since I wanted to go on vacation with my family Feb of 05.
It might be a few days though, I start IVIG tomorrow. I could be out of it for a while. Please keep me in your prayers. Thanks Posts: 663 | From NH USA | Registered: Sep 2004
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Boomerang
Frequent Contributor (1K+ posts)
Member # 7979
posted
Sending prayers to achey.
Send some back to us too, okay?
Take care.
Posts: 1366 | From Southeast | Registered: Sep 2005
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posted
oh gosh I'm a little freaked out! My Dr just called and left me a message ( I was sleeping) she said she needs to follow up with me with a few things! This is my PCP I'm talking about. I really hope she didn't back out of the IV thing, I'll die. Maybe I'm just thinking too negative!
I'm trying to have a positive attitude, but she's freaking me out!
Pray for me :-)
UGH, as I sit here and wait for her call!
-------------------- "don't ever write anyone off, you'll never know who or what they will become" Posts: 115 | From la la land | Registered: Apr 2007
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