LymeNet Flash: IV Rocephin Buddies -- Part 3 (continued)

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»	LymeNet Flash » Questions and Discussion » Medical Questions » IV Rocephin Buddies -- Part 3 (continued) (Page 2)

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Topic: IV Rocephin Buddies -- Part 3 (continued)

KP
LymeNet Contributor
Member # 9488

posted

I guess I am officially no longer a member of the IV Rocephin buddies!! My PICC line was removed this morning! Yeah!! [woohoo]

The skin on my arm is a bit tender from being bandaged for 8 weeks. Otherwise everything looks and feels great.

I have been feeling a lot better int he past 3 weeks. I'm not at 100% but if this is as good as it gets, I'm okay with that too. My hands still swell and are stiff every morning. I still have some jaw achiness. And I still have a tightness in my chest when I walk too fast or too far.

Hopefully all of these things will get better in the next few months, but if they don't, I'm still thanking God for how far He has brought me since July.

I'll still be checking this board to see how everyone else is doing! [group hug]

Karen

Posts: 154 | From Medford, NJ | Registered: Jun 2006 | IP: Logged |

Getting Better
LymeNet Contributor
Member # 8919

posted

Good for you, Karen.

Is there evidence that we keep getting better after the rocephin stops?

--------------------
Jeff

Posts: 533 | From CA | Registered: Mar 2006 | IP: Logged |

KP
LymeNet Contributor
Member # 9488

posted

Jeff,

My doctor tells me that I should continue to see improvement over the next 6 to 9 months AFTER the Rocephin. I took oral abx during the IV but am stopping that as well.

I will keep you posted on my progress. I'm fortunate that I think I only had Lyme for about a year before treatment. The doctor told me I had an 88% chance of being cured with 8 weeks of Rocephin...not sure how they come up with these statistics, but it sounded good to me! I feel about 88% cured...maybe that's what he meant! [Big Grin]

Karen

Posts: 154 | From Medford, NJ | Registered: Jun 2006 | IP: Logged |

Katcon
LymeNet Contributor
Member # 9812

posted

Hey there !

I got my lined pulled yesterday. Started to get a nasty rash next to my picc line. Finished 8 weeks of iv. My neck is still sore, and right ankle. My legs are better but still tire out on me.

I start bicillin shots tomorrow. I will keep you all posted on my progress.

My insurance comp denied my appeal of my last 4wks of rocephin. Filed another appeal, I'll have to wait and see what happens.

Good luck everyone, and I will keep my rocephin buddies in my prayers.

Kat

Posts: 175 | From Pa | Registered: Aug 2006 | IP: Logged |

healthywealthywise
LymeNet Contributor
Member # 8595

posted

I mentioned previously that my line was pulled last Friday. I still have a site rash from the darned adhesive.....it burns and itches.

I'm not missing having to dose twice a day and it is freeing to be able to jump in the shower and wash my hair with BOTH hands. [bow]

I'm still pretty depressed and am experiencing recurrent pain in my feet and legs. I was on the Rocephin for 12 weeks.

I hope what has been said here is true, that I'll steadily improve over time.

I see my doc next week so not sure what, if anything, we'll do next.

Good luck all and keep us posted!

Posts: 867 | From PA | Registered: Jan 2006 | IP: Logged |

humanbeing
LymeNet Contributor
Member # 8572

posted

Hi everybody,

So eight weeks into this hideous accessory and I am having some really better days.

My remaining symptoms are mostly jaw/hips/headachey--sloppy brain.

I went to a new lldoc who wants me to be worked up for systemic vasculitis, to rule out some autoimmune diseases that she said can be triggered by neurolyme.

Since she isn't in my network, insursance won't pay. So I went to my ID doc who gave me rocephin, he said no to the spect scan, no to the CT scans and no to the blood work that involves big bucks (cytokine stuff).

But yes to some other blood tests. Now, I asked my gyn and she will okay the ct scan of pelvis, abdomen and chest.

My ID said I should do another month of rocephin and maybe even more...

I asked him about the cyst form and he said he doesn't believe it alters the treatment success ...he is an IV only man--some of his pts take it for a year (at least he recognises it as a chronic infection).

Sorry to hear of all the itching, I don't have that, all clear at the picc site.

The GI problems are gone and nausea...I don't know if this is the answer but since I started taking "Candex" for yeast and doubling my probiotics the GI stuff is no problem.

I take 2 "Candex" (from health food store-expensive!) and a 50 billion probiotic, in am with bottle of water as soon as I wake up--can't eat for one hour.

Then 2X day I take a 20 billion probiotic tabs. Then two hours after dinner I take another 2 "Candex" and a 50 billion.

I am heading off to pa for the lyme conferences. I hope I don't relapse but I have comfy shoes and all my drugs in tow. Also, Kat will be coming so we can share our pain stories.

I will try to post from the confeernce but don't know about connection issues.

Hang in there and pray for pain free days, dead ketes and duck enlightenment

--------------------
We are spiritual beings on a human journey...

www.ruggierogallery.com

Posts: 906 | From CT | Registered: Jan 2006 | IP: Logged |

wentworth
Member
Member # 10359

posted

hi all.I was on 2 months of
Rocephin ( good stuff)
a 2 weeks lapse then my 3 month begins again.
then one month and a 2 and 1/2 week lapse...Insurance will not cover at home I appealed it again just like before and still no dice...
I wrote Hillary Clinton a LONG letter all about what I have been going through with Blue CRoss and Blue shield a TOTAL disgrace in the Richies nation in the world.... [bonk]

anyway I must go to a hospital for IV...one week into my 4 month I have a HUGE gallbladder attack.
Thought it was food poisioning eat at Subway had a tuna fish sandwhich ...no
but that added to it.

I go to Hospital and find out I must get my gallbladder out high liver count...which meant I was tryin' to pass the sludge and stones from gallbladder...

so now nothing no antibiotics since
Oct 26th...thought I wouldn't be able to walk again and was scared so far it's ok...I still have numbness but not as serve as when I was on the drip...
the drip brings out the best (worst) in ya before you feel better.

still on Urodisol for gallbladder ya should take that while you are on Rocephin.

I still have my pic line in which
I clean everyday
and still have a nurse once a week to change bandage.

my Doc...now wants a doxy drip 3 to 4 hours
a day at the hospital- 5 days.
but my neuroligist wants the gallbladder taken care of first.

then I go for all MRI's to see how the white lessions are doing.in spine and brain..

the only thing I notice which has been bad is if I hear loud music I get a REALLY bad eye pain and headache.

stomach pain eased up & bowels acting up abit...

hang in their folks this is a rollercoaster ride with out the thrill...

has anyone heard that doxy gives you symptons like MS?????

someone told me that.

--------------------
I feel like their's corruption with some Doctors about lyme disease

Posts: 23 | From Westchester NY | Registered: Oct 2006 | IP: Logged |

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