Nal
Frequent Contributor (1K+ posts)
Member # 6801
posted
My stomach was hurting and my anxiety was very high. My dr called me yesterday and told me they approved my IV meds. However it looks like Ill be getting a picc line instead of a groshon.
I am very, very scared!!!! You all remember what happened when I took the bicillin shots right?? What if the same thing happens on the IV meds? What if I get so sick I cant move! Plus, how can I manage a picc line when I have 3 active kids at home?
I just want to crawl into a hole. If this doesn't work, I don't know what I am going to do!!
Nancy
-------------------- Life is 10% what happens to you, 90% how you respond to it!
-Chuck Swindoll Posts: 1594 | From Colorado | Registered: Jan 2005
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char
Frequent Contributor (1K+ posts)
Member # 8315
posted
Nal,
Sorry you are having to deal with all this!
I remember how hard you herxed on the bicillin!
My daughter has picc and you do have a lot of options with adjusting the dose and trying different drugs.
She prefers the picc to the orals as she is feeling better faster.
Definitely takes some desensitation to idea.
Hope the idea of flexibility with dosing is a bit of a comfort to you.
Nal
Frequent Contributor (1K+ posts)
Member # 6801
posted
Thanks Char. I still haven't figured out if I herxed on bicillin or had a bad reaction to it. Im still pretty freaked about it though. Can one be on the IV meds if trying to fight off yeast too?
Time is of the essence here and since insurance approved it, its do it now or I may not have the opportunity again.
Nancy
-------------------- Life is 10% what happens to you, 90% how you respond to it!
-Chuck Swindoll Posts: 1594 | From Colorado | Registered: Jan 2005
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
Hey Nancy,
I was also up most of the nite, sick and worrying.
Hang in there ok....i will be sending warm thoughts and strenght your way. Maybe you wont herx so bad this time....each antibiotic is different.
Sometimes the only way out is thru. You hang in there, ok
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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Nal
Frequent Contributor (1K+ posts)
Member # 6801
posted
Who else does IV meds?? Helpful or not?
Nancy
-------------------- Life is 10% what happens to you, 90% how you respond to it!
-Chuck Swindoll Posts: 1594 | From Colorado | Registered: Jan 2005
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Nal~
I had a picc line in for 6 1/2 months. I got very used to it, and it was no trouble at all.
I also saw good improvement after 4 1/2 months of IV. I now feel like I'm back in the land of the living.
However, I switched LLMDs in the middle of my treatment. My first doctor did not order routine blood cultures from the picc line. The second did, and found a fungal infection. That is why the line was pulled.
Fortunately, I didn't have a fungal infection. It was just somewhere in the picc itself.
SO...hopefully your doctor will also require a monthly blood culture. Ask about it.
Good luck. Think "I'll feel better with this" and it will help you adjust.
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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arg82
Frequent Contributor (1K+ posts)
Member # 161
posted
I've done IV meds for a total of just over a year and 3 months since 2002 - six months in 2002 (4 months of Rocephin, 2 months of Zithromax), 3 1/2 months in 2004 (Rocephin), and I'm coming up on six months now (about 3 months IV Clindamycin, just over 2 months IV Primaxin). Sometimes the IVs have helped, sometimes they haven't, but overall for me they have been more helpful that orals. Each person is different.
The first time I was on Rocephin, I did really really well. I lost my gallbladder to Rocephin-induced gallstones but I still did really well on it. The Zithromax folling the Rocephin also did help but I had to stop because my insurance company decided six months was enough (I was lucky to get that long out of them). At this point I was probably at about 70-80% and continued with orals after stopping the IVs but they weren't enough to continue with the improvement and I began relapsing about 4 or 5 months after stopping the IVs.
The second time on Rocephin, I didn't do as well because I ended up with GI complications similar to gallstones but without my gallbladder there to be removed - not a good situation but not at all common (I don't really know of anyone else who has had this happen). I should add that I was never on Flagyl or Tinidazole with Rocephin so that could have contributed to the unsustained/lack of improvement.
The Clindamycin seemed to help during the first month (had a herx, seemed to be slowly getting better) but then slowly went downhill over the next two months. For me the Primaxin has been great and I'm slowly seeing improvement for the first time in a few years.
So that's a long-winded way of saying I've done IV treatment quite a bit and overall it has been beneficial for me more than not.
The first time I did IVs I had a PICC line and managed fine with it. This time (starting in 2004 with the second round of Rocephin) I have a port-a-cath in my chest that has been great and I really love it. Why is it you can't get a Groshong? Is it your insurance that won't let you or your doctor? Just curious. When will you be starting?
posted
Nal, so sorry to hear of your recent problems, i really hope that things level off for you, i wish good things for you and are sending positive thoughts your way. hang in there ......hope to talk to you soon, dj
-------------------- D.J. Lyme Posts: 69 | From shoreline CT | Registered: Dec 2005
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ArtistDi
Frequent Contributor (1K+ posts)
Member # 2297
posted
One of the advantages of IV is that you control the rate of the medicine. If you infuse slowly, you don't have to be hit so quickly or hard as with a Bicillin shot.
I would still advocate for taking acidolphilus, etc for yeast control, but one gets used to a line.
Posts: 1572 | From Hatfield, MA, USA | Registered: Mar 2002
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Nancy, try to imagine the BEST! Imagine how relieved your stomach will be, for one thing!
In no time at all, you'll be an old hand at infusing. In the space of a day, I was infusing with one arm and firing up the coffeemaker with the other.
A few times I forgot I was infusing, forgot to put the unit in my housecoat pocket, and walked away from it - causing it to fall on the floor. They must be sturdy!
I would set it next to my computer in the morning and read LymeNet and drink coffee!
You've been on orals a while, so have hopefully knocked down your spirochete load enough that your herx should be tolerable. Mine was surprisingly MILD compared to earlier herxes on orals.
Assume the absolute best possible outcome. Then expect it!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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posted
My lLMD put me on the PICC line first because he said I would herx worse on orals. I did 9 months of IV and there were ups and downs. You need to get help with your household duties that you won't be able to do. I did get ill on the PICC line, but I was determined to get through the horrible herxing and get off the PICC line and on with my life. My 76 year old mother came and lived with us for 4 months and that was a true life saver. I actually needed someone to take care of me. Don't panic! Ask for help. Ask your church, relatives, friends, neighbors, etc. I wasn't good about that, but just having someone get the mail or fill a prescription is a big help.
Also, just so you know, after I got off the PICC line, I herxed more on the orals and took a year off from all antibiotics.
The best thing you can do for your three active children is to remain as calm as you can. If you need to cry, go in the shower or bathroom - that's what I do - so they don't worry. You will get better, but you need to get through this hurdle first. It may not be as bad as you think.
Peace, NC Lymie
Posts: 75 | From NC | Registered: Dec 2004
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Lydie
Unregistered
posted
Nal, I worry about the continuing helplessness and depression in your posts. Do you have supportive family, or is you husband helpful?
I felt overwhelmed with having Lyme, three kids w/Lyme, two of those kids with asthma, and one of them with juvenile diabetes (the worst stress of all, believe me), dealing with the school doctors etc. My husband is not supportive, my extended family isn't either, and friends seem to drift away after a few years of this.
I finally got myself a therapist. I think that this would be a really good thing for you. Mine is male and very funny- what I need now. At other times a nurturing female would have worked better. Think about it, it helps.
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posted
Hi Nancy. I know your anxiety. I had it too. I
have had my IV in for 4 months now. I have two
kids a 2 year old and a 5 year old. I had the
picc line put in my right arm because I hold my
son with my left arm. You may want to think about
what side you want it on. The first three weeks
were the hardest. After that it becomes part of
your life. You don't even really think about it.
My kids have gotton used to it. I like it much
better than the orals. I feel better than I have
in years. If you herx on the IV you just stop the
drug for awhile just like you do the orals. Just
think of it as it will help you so much more. You
will be fine. Better than fine. I know it.
Good luck!
-------------------- Love, Merrie Believe in the power of your spirit..for it will carry you through the darkest hours of your life Posts: 261 | From minnesota | Registered: Sep 2004
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NP40
Frequent Contributor (1K+ posts)
Member # 6711
posted
My son did 5 months of IV via the PICC. He had few problems with it and it was much more effective than orals. We found it much easier on the stomach as well.
Posts: 1632 | From Northern Wisconsin | Registered: Jan 2005
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posted
I have a groshong and I love it. 3 months on rocephin so far without any improvwement, but the groshong catheter makes it painless and easy (except for showering!)
If you get one, feel free to ask me any questions.
Posts: 85 | From Eugene | Registered: Jun 2005
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