Topic: Wish me luck Folks, Finally started IV Rocephin Today at Home
lymetwister
Frequent Contributor (1K+ posts)
Member # 19590
posted
You wouldn't believe what I had to go through to get this started.
My Neuro doc. wrote me a Rx for the Rocephin, but I couldn't get it filled from a Home Health care agency as he wouldn't send them supporting documentation. He said he thinks I might have it, but since it didn't show in the CSF or Western Blot, but only on Igenix, he gave me the Rx and told me I would have to find a way to fill it on my own and pay cash for it.
So, I found an IV Pharmacy down in Florida to fill it. They sent me everything Fed Ex overnight. They took my insurance card, but also wanted a Credit Card for backup in case Insurance doesn't pay.
I had to put my own IV Catheter in my arm which was a little tricky being able to use just one arm. Plus I had bad tremors and terrible anxiety this morning unrelated to all of this.
I managed to get in a 22 Gage Catheter and had to use clamps to hold it in place so I could screw on the extension set.
I will leave this catheter in place as long as it lasts.
I got the Home pumps so I don't have to hang it and can just walk around with it.
I have my first 2 Grams infusing as we speak.
I'm only glad I'm an RN with great IV skills or I would be in trouble.
Not sure what to do after 4 weeks. I guess if I show improvement, I might get the Neuro Doc. to continue with this.
I just hope I don't Herx emotionally as I have been a bit of a cryer as of lately. And my anxiety has been all but through the roof.
You guys know this is my first time with Abx so can you tell me what to expect ? Will I start to feel better after a few days ? Will I Herx hard ?
Appreciate any information.......
LT
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
LT,
That is what I call being resourceful!!!!!!!!
You might or might not herx hard.
It seems everyone is different.
Don't expect to feel better quickly...it's better not to expect to much too soon.
I haven't done IV meds though, so others may be able to help you more in that respect.
I am also an RN so I can relate to what you had to do to get that IV catheter in!
Congrats to you for doing whatever you needed to do!!!
Big Hugs...
Keep us posted!
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Good luck. And, I'm not sure I saw that you are taking a gallbladder protector. Just a reminder while on this IV Rx as that can help a lot from what I've read. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
You are something! I love your determination.Great job.
Posts: 261 | From Piedmont | Registered: May 2008
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lymetwister
Frequent Contributor (1K+ posts)
Member # 19590
posted
This is the kind of crap I have had to deal with since my symptoms began. The health care system is just falling apart across my very eyes.
I can't believe I gave 14 years of my life helping others as an RN and then I get sick and seek out help and none of the specialist I ever saw even thought to mention Lyme.
Not only this, but I felt like every Dr. I saw was just so Baffled by my symptoms, that rather than try and take me on and figure out what was going on, I was referred back and forth to this specialist and that specialist.
Now I have a Neurologist who tells me "It sure sounds like Lyme" and writes me a Rx for IV Rocephin that was basically unfillable. He even put the diagnostic code for Lyme on the Rx 088.81
My father was with me and he thinks the Dr. wrote the Rx after I insisted on it, i.e. he folded to my request, but I know that the Chief of Neurology at a Prestigious hospital doesn't fold to a patients request.
I also have a Dr. at Hopkins, who told me upon my diagnosis of POTS that I was now "Part of the Hopkins family" and that if I needed to be admitted for anything, it could be done through him. Well, I have made this request a few times, the last when I wound up at my local county hospital and he told me he couldn't admit me, but would make a referral to Neurology. I called Hopkins Neurology and based on what they read on the referral, they said their was no merit for me even to be seen by the Neurology department.
I was like you've got to be kidding me. Every symptom I have is Neurological, and hellooooo there is something making noise in my head that was documented by another physician.
I went to their ER anyway and almost had to be escorted out by security.
I am beginning to educate my little ones now on medicine and as they grow up, how they need to take action and responsibility for their own health care.
I would think that even Dr. House could figure this one out with his eyes closed.
LT
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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Ocean
Frequent Contributor (1K+ posts)
Member # 3496
posted
Good Luck LT!! I'm glad someone prescribed the meds for you and you were able to get someone to fill it...hopefully insurance covers it so you don't have to worry about that end of things.
AnnaL...I am sure LT has a regular IV catheter in his arm...not a PICC. If you are going to radiology, it sounds like you are getting a PICC put in. I've seen PICC's put in and I highly doubt anyone could do it themselves. Still putting an IV in one's arm has to be tough...so good job!!
posted
I too am sure it's an IV not a PICC. Too dangerous to do at home as you need an xray afterwards to be sure it's in the right place.
But goodness lymetwister, I'm impressed and totally amazed that you did this yourself. Even if you are an RN.
The meds affect everyone differently, just as the illness itself does.
I was exhausted for the first 7-10 days. Totally. Also had diarreah problems, and ended up tripling the dose of Acidophilus to corrent that.
We take Multidophilus12, as it is 20billion cells, and 12 strains of acidophilus.
Begin with the regular dose, but if you have problems definitely up it. Then we backed down and were fine with one daily dose.
Wishing you blessings, and keeping you in prayer.
-------------------- Wishing You Showers Of Blessings! Lyme since Fall 1983 = Diagnosed Summer 2008 IV Rocephin 7 weeks Stopped due to drug fever Now doxycycline "For I know the plans I have for you...plans to give you hope and a future." Jeremiah 29:11 Posts: 430 | From Sunny South | Registered: Jul 2008
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lymetwister
Frequent Contributor (1K+ posts)
Member # 19590
posted
Thank God my last job was working as an IV Therapist. I did place PICC lines for the co. I was working for.
But, I only gave myself the Peripheral IV, like the ones you get in the ER.
I will leave it in as long as it lasts and rotate the site as needed.
A PICC line is overkill and only indicated for drugs that are irritating to the vein or if you need an IV for 6 mos. or more.
A Midline is yet another type of Catheter that can stay in place for up to 6 months and does not require an Xray after placing.
The other Thank God is that I have good veins. My head is already clearing after the first dose. I hope the suckers arn't going into Cyst form that quick.
LT
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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bettyg
Unregistered
posted
thoughts and prayers heading your way LT.
are you a woman or man? i thought i'd been talking to a male, but neuro lyme messes up my thinking.
best wishes to you; glad you are teaching your children what to do to get action on their own health. what a ROLE MODEL you are kisses/hugs
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
HaHa LT is a male Betty he is just a good Dad too!
Good luck LT! sorry I missed you....been back and forth to dr. these days..Keep your chin up and believe that you are going to make some headway......
Best, Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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lymetwister
Frequent Contributor (1K+ posts)
Member # 19590
posted
I am going to kick the crap out of this disease at all costs.
Thank you everyone for your kind words and support. Believe me, there is a reason I am going through this hell.
Even the stupid stuff I've done, there is a reason for it.
I honestly believe that all that has happened to me is due to the fact that I need to experience every bad symptom of this disease so that when I get rid of it, I can advocate around the U.S. and bring all of this to the surface.
There has been alot of talk about Oprah and some other talk shows, etc. I am the type of person that will sit outside of Oprahs front gates and watch her leave and come until she stops to hear what I have to say. BTW, she is from my home town.
But I won't stop there, my entire nursing career will focus on this nasty disease. My goals will be to get better recognition of the existence of Lyme, better testing, and lastly Better treatment.
Yeah, I'm a guy, but I will be the Florence Nightingale of Lyme and that will go on my Tombstone, be sure of that.
I try and think of all the diseases I would trade for this one, and I can't think of one out there where people come close to the suffering we do. I have seen just about everything out there in my career and nothing comes close to this.
Just another one of my 2 cents for whatever it's worth. I should be up to a few dollars by now :-)
LT
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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bettyg
Unregistered
posted
"Yeah, I'm a guy, but I will be the Florence Nightingale of Lyme and that will go on my Tombstone, be sure of that."
twister, you can be our florence nightingale of lyme anytime.
glad you want to persevere on oprah, etc. we have/had a member who closest friend is 1 of oprah's top assts!! she talked to her about it, but didn't get anywhere.
shame that on dr. oz today mentioning parasites and BABS so he didn't discuss babs at all so said our members....
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