IV Rocephin Week Three /Long

[Guest guest]

Well, just to let everyone know I'm still kicking, but not high and

not often! I've been amazed at the temporary relief I receive from

the IV Rocephin for my terribly painful muscles and joints. It's

like they go ahh once the IV gets going. One day, I fell asleep as

my husband escorting the RN to the front door and he was gone only

a few minutes, but I was out like a light and slept for a little over

4 hours. Something of a record for me anymore. My sleep averages

2 hrs in 24 hrs until day 7 or 8 and then it's crash and burn time

and nothing can keep me awake!

I don't yet know if I am going to be on the IV for 4 or 6 weeks, and

guess I'll find out after week 4 when the insurance companies duke it

out. For those like me who have never had the IV treatments, I will

add that I am experiencing an increase in the body pain anywhere from

2 to 3 hours after the infusion, in spite of taking the pain and muscle

medications. This is no big surprise to me since I have reacted with

pain and fatigue evolving into overwhelming pain and total exhaustion

from the beginning of just the oral abx treatment of Lyme. I believe I

am one of the " lucky ones " (pun intended) that goes on herxing

throughout treatment just like that Energizer Bunny keeps on going and

going.....

However, even with the worsening, the short periods of betterment that

just " happen " every now and then lasting hours and minutes, are at

least " windows " into what it's like to be in remission or if caught

soon enough, cured. It may well be that someone somewhere is really

working on a cure for Lyme but due to the almost guaranteed bombardment

of questions from thousands upon thousands of Lyme patients, this

imaginary person is keeping their search quiet for now. I cannot

imagine that there are not real live people working to find a cure

for Lyme because if nothing else, it's certainly a very

interesting and complex disease.

Don't mind me, I'm whining and rambling... I do believe I read where

week three on the Rocephin could be " difficult " and though I don't

believe everything I read, I might have to agree with that week three

stuff. While receiving the Rocephin, I do good and as I related can

even relax at times and go to sleep due to the ahh effect on my muscles.

I've even noticed a couple of times having an appetite and wanting

to eat immediately after the infusions. At other times, food simply

tastes like straw and I just cannot force myself to eat! I continue

to drink as much water as possible to help my body deal with the

Rocephin and my goal is 96 oz of water daily and mostly I manage to

drink all of it!

Right now, even with being miserable in spite of my medications, I

would still agree to do the Rocephin IV again because of the relief,

even temporary, that affects my muscles and joints. I am simply

amazed that the muscle pain and tightness is helped by the Rocephin so

very much. I know this may not be the case with everyone, but as I

told one RN, I'll take the muscle ease and sleep whenever I can

get it!

To all the people on the list who this is " old stuff " to, please

forgive the length of my post. I just thought some people who

haven't been on IV before, like me, might benefit from something

I might write about being on the Rocephin IV treatment as a newbie.

Wishing us all health and freedom from pain,

both physical and emotional -

P.S. I was " concerned " about how awful my house looked and having the

nurse come daily, but you know what, after almost a decade of pain and

growing debility that finally became total disability, plus my husband

doing 99% of care taking for both of us I figured, who cares? He's

only human, not Superman, and if anyone thinks we can afford a maid or

help to clean after years and years of medical bills, forget it! This

is just how it is for now and I can accept a cluttered much less than

spick and span home much more than I could live with my husband's

collapse from earning our living and doing all the shopping, cleaning,

cooking, washing, etc, for both of us. I feel extremely " guilty " that

I cannot do more and have used my hours and minutes of betterment to do

a very few loads of laundry or pick up a room, something I cannot

normally do because of the pain exhaustion and debility. I consider it

time and energy well spent if it saves my husband even a little of the

doing. I can deal with this day in day out staring at 4 walls and the

worsening for now because of the abx treatment because I hope with all

my being that I will be able to help him with some of the load he

carries by going through this now. Do others feel as guilty and at

times " worthless " as I do? We never had a lot of friends, and we have

less than I can count on one hand now I guess because people have

nothing in common with other people who are sick and can't do " normal "

things. And, at times I almost believe other people think they might

" catch something " from us. However, I'm grateful to the few true

friends we have on the net and a two where we live. God has been

with us every step of the way or we could not have made it to this

point. I am not preaching, just telling the truth. And, finally I

have to thank God each night and day for the brave physician who is

our Lyme doctor, risking his/her practice and ability to earn a

living for his/her own family. Our doctor continues to diagnose and

treat people with Lyme when other doctors are closing their practices

to new Lyme patients because it continues to be hazardous to be one

of the few among many physicians who are knowledgeable and willing to

diagnose and treat Lyme when of course it doesn't exist in " most states "

and when the wrongly recognized " experts " continue to prostitute

themselves for money, telling everyone who will listen that of course,

chronic Lyme does not exist, that it's simply an addiction to

antibiotics!