posted
I have seen a new LLMD and after being on Doxi for 7 weeks this LLMD feels enough is enough. I need to go on intravenous Rocephine for 28 days. Nervous about having that port thing put in my arm and then threaded up into my chest.
If anyone out there has had this could you tell me a)does it hurt to have that port put in and taken out and b)how did this medication work for you.
I am very nervous. Thanks to everyone.
Gailsy
Posts: 31 | From Bloomfield, New Jersey | Registered: Nov 2006
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My daughter has it, she is 14. She did very well. I went into the operation room with her. It took about 30 minutes. They gave her shots to not feel the pain but she said she felt pressure. She watched it on the tv screen.
She doesn't want to live without it. It has been about 4 months. When we learned how to do the fusion, it was so overwhelming, but now it is so simple.
Do it, it is helping her so much.
Lyme4
Posts: 60 | From RI | Registered: Dec 2006
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posted
Rocephin and I are old friends. I am a little confused though, are you getting a port or a picc line? They are two entirely different things. A picc line is threaded up your arm and into your chest, it feels like getting an blood draw. A port is implanted in your chest through minor surgery and is totally internal, accessed by a huber needle to do infusions. I found the surgery mildly uncomfortable after but the port was so easy to deal with. I benefitted greatly from Rocephin, am in remission right now. I liked the feeling when I infused that I was really in control of getting myself better. I don't know if that sounds weird.
Posts: 41 | From Toronto, formerly of CT | Registered: Apr 2003
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Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
Good afternoon Gailsy,
Please understand that I am not trying to discount your LLMD. I feel that each doc has his/her reasons for the protocol they choose for each patient to follow...and it is not my place to question your particular protocol IF you feel like you are dealing with a good LLMD.
However, I am a bit perplexed by what you have written. 7 weeks of monotherapy is rather a short time to give up and jump directly to IV therapy. UNLESS your doc feels that your infection is at a point where IV is necessary.
IV is usually reserved for strong neuro cases or cases where the patient has difficulty with orals or IM therapy. If the only orals you have taken are 7 weeks of Doxy, and your doc is wanting to move you to IV due to a lack of improvement thus far...I would be a bit suspicious about this.
There are several choices of oral meds that can be tried first, and also several choices of combination therapies that can be tried as well.
Have you been infected for a long time? Has your only treatment been this 7 week course of Doxy?
I also want to caution you that 28 days of Rocephin is also a short course of IV therapy. Many make the mistake of doing only a month or so, and therefore relapse quickly when the Rocephin treatment ends.
Rocephin should always be followed up with orals, and used in conjunction with Actigall to help ease the burden it places on your gall bladder.
Rocephin is also known to be tuff on emotions, so be aware of that possibility. And you should also make certain that a cyst busting med is thrown in there as well.
I did Rocephin for almost 5 months, but stayed on IV for a good 15 months. It was what turned my particular case around.
Just hoping that you are aware of your options and know what questions to ask of your doc,
My best, melanie
Posts: 7052 | From Colorado | Registered: Mar 2003
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
I was on 9 months- the first 6 months nothing happened- then TA DA!!!!!!!! LIFE!!!! Every day less symptoms, less PAIN. Then finally, NO PAIN!! No ringing in years! No vomiting! No irritable bowel syndrome!!! Being able to think again! MY FLOATERS went away!!!! They were so thick/ NO balance problems unless tired or sick!!!!!! And my progressive weakening STOPPED!!! And the choking when I ate stopped- and the weird dry clicking in my throat (has anyone else ever gotten that, that weird throat closing/clicking in the center-?)- stopped- it used to scare me- and I stopped SLURRING! And it stopped feeling like EARTHQUAKES were happening or the floor was rolling like a ship at SEA! And I stopped jolting into the air my whole body electrified- and I stopped TWITCHING!!!!!!!!!!!!!!!!!! EVERYTHING TWITCHED by that point- my left eye below- and above- and thse big rolling twitches- everywhere- then whole body jolts- BAM!!!!!!!! and I got Adie pupil one day- and chorea in my left hand the next- and that was gone!!!!!!!!!! And my multiple chemical sensitivies was gone! I could BE AROUND CLEANING PRODUCTS and not get all sweaty and start to vomit!!!!!!!!!!!! And the ARTHRITIS WAS GONE- except right before my period I get stabbings in my left knee- but the inflammation went aWAY and I COULD USE MY HANDS AGAIN!!!!!!!!!!!! AND HOLD COFFEE CUPS WITHOUT THEM BREAKING! AND REMEMBER MY CHILDS NAME! AND COOK!! AND DRIVE!!!!!!!!!!!!!!!
Holy holy it was so terrible. I am so blessed.
ANyone else lose tons of coffee cups because they would fly from your clasp and break>? Because you couldn't hold them anymore- my clasp would GIVE WAY AND BAM BAM BREAKING CERAMICS!!!!!!!!! AGH!
Only a few things stayed- I am still chronic- I ran a fever for 4 years until I took cipro! Then my fever went away!!!
I am STILL HARD OF HEARING if other noises are competing but I can hear normal other than that.
I lose my balance if I try to go off abx but other than that I can walk fine as long as I get enough sleep. If the baby is up all night then I will sometimes be a little wobbly the next day.
I am so glad to be alive.
IV ROCEPHIN saved my life. I had been on orals for A YEAR WITH NO PROGRESS except disease progression. So much worse-
And if I hadn't begun it all with a tick bite I would NEVER EVER have believed it was Lyme because gosh darn it wasn't solved in a few months of orals!!!!!!!!!!!!!!!!!!!!! Didn't even begin to do anything I could see- I needed IV.
BUT THERE IS RISK!!! IV carries risk- and anyone out there who doesn't know that don't have your family sue your LLMD if you die from complications! PLEASE!
My LLMD saved my life but he like so many others has to be so cautious now because anything happens they get crucified!!!!!!!!!!!!!!!!!
IV ROCEPHIN SAVED MY LIFE and I am goshdarned almost religious in my zeal for it. It saved me from worse than I could ever have imagined. The pain was so beyond BEYOND> SO BEYOND BEYOND!!!
I would go into the laundry room and lay my head on the dryer when it was running and tears would just roll silently down my face. I would only let myself do that here and there because I had a toddler and I didn't want her to see me doing that all the time. But the pain destroyed me. I wasn't even able to BE with so much pain./
THANK GOD for Rocephin.
Getting worse terrifies me. If our LLMDs are gone.
My LLMD said, when I was first seeing him, "Don't worry- I'll lose my license for you guys if I need to- but I will my best to get you well."
He is an angel*)!!!!!!!!!!!!!!!!!!!!!!!!!!!!
-------------------- 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 had a line in a few years ago. I would say it is more like pressure too,not pain. Just make sure you have it monitored often, I developed a clot in my jugular vein and the shunt had to be removed. I think that is fairly rare though, I don't want to scare you. Loose bowels was a problem on Rocephine.
Take care I hope all goes well Your friend Cassie
-------------------- Posts: 564 | From Toronto Ontario Canada | Registered: Jan 2002
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Rocephin was the only abx. that started to turn around my full blown ALS/Lyme syndrome.
Go for a PICC line not a port as you will be infusing daily and with a port you have to pierce the skin each time , not just do a sterile hook up. No sweat .Plus less expensive and less invasive.
Travlr1
Posts: 66 | From West Coast | Registered: Jul 2006
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caat
Frequent Contributor (1K+ posts)
Member # 2321
posted
I added flagyl to the one month of rocephin at around 1 1/2 to 2 weeks. Then followed for 5 weeks or so with ceftin and tinidazole. I think it got rid of the lyme and I'm now working on co-infections. Flagyl and tinidazole work on the cyst phase of the lyme life cycle. Cysts are sort of like eggs. I think there should be less of a relapse rate with one of those added...
Yeast is BAD with this. You may want to talk to your doc about fluconazole. I needed LOTS of it.
Posts: 1436 | From Humboldt county ca usa | Registered: Mar 2002
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posted
I just wanted to thank everyone here who responded to my question. It is hearing from all of you that help us others make more intelligent decisions about what to do and not just take what the doctor says as "LAW".
Thank you all! Gailsy
Posts: 31 | From Bloomfield, New Jersey | Registered: Nov 2006
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