posted
Actually longer. Just 3 years of unbearable pain and discomfort.
I saw Dr. S. today. I start IV Rocephin next Thursday, I believe. But I'm realizing this is only the beginning. I'll get my one month of IV abx. He's going to try for 2, maybe even 3 if he pushes it. But he doesn't think I'll get much beyond that, IF I get that.
I've read enough stories to know that 3 months isn't going to kick Lyme. And since my coinfections were negative, he can't treat those until they are proven.
I don't know what to do. Is it worth 3 months of 6 hours in the car (3 hours each way), 5 days a week, not being able to get a job while my bank account drains, my sister cracking the whip behind me to "get a job" because she thinks I'm exaggerating Lyme? If you can't tell, I'm pretty depressed.
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Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
posted
Lots of people have a month or two or three of IV and then go on oral antibiotics ( you must after the IV so that you can clear up whatever is remaining.)after that.
If you are using Rocephin, there is a version available that can be mixed at home (with a health professional teaching you how at first) that is less expensive now. If you have insurance, it will pay for having the meds delivered to your house and you can infuse at home. I did.
I can't imagine why the doctor wants you to drive there every day!
Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Hi Tailz. Don't despair! You can infuse at home. It SEEMS like it'll be scary, but it's a piece of cake. I used to infuse while drinking coffee and reading LymeNet in the morning. Or if I was running late, just throw my stuff in my purse and infuse at work. (It WOULD tend to gross everyone out a little.)
I had a PICC line.
Even just having it for a month or so will be a good thing.
You can arrange to go have dressings changed locally -- no need to have it done at the LLMD's office.
This all seems very overwhelming at first! But trust me, it will also fall into place.
I think it's a great jump-start for treatment, so go for it.
Good luck. If sis is unsupportive, perhaps she'd like to have one stuck in HER arm?
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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char
Frequent Contributor (1K+ posts)
Member # 8315
posted
Welcome tailz,
Sorry to hear you have lyme but glad you have diagnosis and getting treatment started.
Both my kids have been on IV abx and they help them a lot.
They infused the first time at the clinic where the piccline was inserted to make sure it went well and no allergic reaction.
After that, we infused at home. A home health care nurse came once a week to change dressing and was on hand if needed. We did the hooking up and infusing on our own.
Many people, my kids included, get extremely fatigued with the herximer reaction to the antibiotic. The stiffness, pain, etc. temporarily gets worse. Where I am going is I don't see how a person could make that drive daily (am I understanding it right?). It would not be safe.
Last year, we traveled 2hrs to our lyme dr. I had to take my daughter weekly for a time and that about killed us.
I would encourage you to find a way to do your IV at home. If that is a problem, you could take orals while you work it out. I had lyme for 4 yrs before I got diagnosed and I am doing really well on oral abx. They can give you 2 or 3 at a time...
Best Wishes, Char
Posts: 1230 | From US | Registered: Nov 2005
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posted
I hope the dr will allow you to do it at home too. That's a lot of driving and a lot of money too!!
You may have to do orals. They work!
Hang in there, my friend. You'll make it!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
i agree with everyone above!
dont lose hope--you can do this at home and you will benefit from it greatly.
If insurance is covering iv they should be covering at least some MINIMAL orals afterwards. even without coinfections, lyme itself would need orals as a follow-up. and there are other ways to get your ABX if your insurance wont cover it. there are foreign pharmacies including mexico and canada.
You have come a long way so far and that was harder than this next step coz it was the FIRST ONES. I swear some of the next steps wont be as hard. trails
Posts: 1950 | From New Mexico | Registered: Sep 2001
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