RZR
Frequent Contributor (1K+ posts)
Member # 20953
posted
I am thinking of requesting IV ABX. I am in a panic because I don't want to reach the one-year mark after my bite and still be fighting.
Thanks, Jen
-------------------- Tick bite May 2009 Diagnosed June 2009 Posts: 2329 | From SouthEast | Registered: Jun 2009
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
My doctor told me that I may not get well using IV abx as opposed to oral - so, being more aggressive may not necessarily be better.
I guess it's an individual thing.
I've been ill for 14 years. I hope you can find a way to get better. I am still ill. I don't really think I had Lyme but it's hard to say. It's all very complicated...
Good luck!
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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posted
I would also guess that this is an individual thing.
However, my experience is as follows:
- Very minor improvement on a variety of orals - Very minor additional improvement on IM Bicillin plus more orals - Much stronger, faster improvement after (so far) six weeks of IV Rocephin plus orals
I'm not going to say that this is "the cure," and I don't know how I'll feel tomorrow, next week, or next month, but so far I am hesitantly optimistic about IV.
Posts: 398 | From By the Salish Sea | Registered: Dec 2008
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posted
I started on IV right away. I felt much better, when I stopped and tried orals I felt awful. I am now back on IV, I'm afraid to go off of it but I know that I can't stay on an IV forever.
That's my experience.
Posts: 86 | From California | Registered: Oct 2009
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posted
My husband didn't make any progress on orals. He made great progress on a combination of IV antibiotics. Everyone is different but if you aren't getting anywhere on orals then IV might make a big difference for you.
Posts: 984 | From San Diego | Registered: Nov 2006
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
If anyone can actually afford IV. Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
I was infected for more than 6 months before I found out I had lymes and I took a month of IV Rocephin. I feel great and have been off the meds for 2 months now. Good luck! I highly recommend the IV!
Posts: 11 | From nj | Registered: Aug 2009
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RZR
Frequent Contributor (1K+ posts)
Member # 20953
posted
quote:Originally posted by bottola: I was infected for more than 6 months before I found out I had lymes and I took a month of IV Rocephin. I feel great and have been off the meds for 2 months now. Good luck! I highly recommend the IV!
I have been infected for nearly 6 months now. Is one month of IV Rocephin all you ever took....no oral abx?
I know nothing about IV. Do you have this at home? Do you manage the IV by yourself?
Thanks!
-------------------- Tick bite May 2009 Diagnosed June 2009 Posts: 2329 | From SouthEast | Registered: Jun 2009
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Like Seekhelp, if you can afford IV's. Most insurance companies will only pay for 28 days worth. Most ppl do IV's for 6 months or more. Cost would be approximately $700.00 a week if you are lucky.
In my opinion, the ppl I have known that are cured of LD, did it all by orals. Thats not to say that IV's don't work.
You will have a procedure done at the hospital to insert a picc line that runs from your arm to your heart or a port that is inserted directly into the chest. You do the IV's at home, some ppl have nurses that come in and help them, this will add to the cost. Others learn to do it themselves.
If you can afford this, then why not. I still think you can be cured with orals however. I guess because I know some ppl that did months of IVs and then had to go back on orals and were still not well.
I would consider it myself if after another year I have not notibly improved. I have been treating for a year and a half, and have noticed slight improvment, so I am encouraged that orals will work for me. Actually my improvement has accured on low dose antibiotics.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
I don't know the statistics of it but if you catch the Lyme right away & blast it with an IV - it may work.
If you have been ill with Lyme for a long time - it may or may not work. There are also very serious side effects from IV or long term abx use in general.
You have to weigh it out & measure the pros with the cons. You have my empathy. It's a difficult decision.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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posted
I did some research and generic rocephin is not that expensive if you mix it yourself - I can get 1g powder for $5 . Problem is the IV and logistics around it - PICC is something I dont want. Dressing changes and all that stuff - who is going to do it? I share room in dirty pest infested place, not comfortable to do anything sterile there- high likelihood of infections
Bigger issue though - I have reservations about beta lactams in general (because they cause l-forms ). And rocephin in particular (because of gall bladder issues)
I'd like to do tygecycline - but its absolutely unaffordable without insurance
Posts: 856 | From MA | Registered: Jul 2009
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posted
Coltman...first of all, where the heck could you get 1 gram ceftriaxone for $5? Tell me, tell me.
I have a nurse now that changes my bandages but that will soon end since my ins will not pay anymore after this month. Making sure your hands are very clean and everything in the kit is sterile (you even wear a mask).
If I had 4 hands i could safely do it myself. you can get nasty complications from a picc, you just have to be careful. I have watched for 11 weeks and take everything in.
Whether it will work for me, I don't know. But have been on orals over a year with no progress whatsoever.
And I'll be waiting patiently to hear where I can get ceftriaxone poder for that price!
Posts: 847 | From upstateNY | Registered: Dec 2007
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posted
I currently paying about $600 per MONTH (not per week!) for my ceftriaxone (Rocephin) and infusion supplies.
My insurance paid for the placement of the PICC line, and for part of the first 28 days of IV abx. During that time, a nurse came to our house and taught my husband how to do the dressing changes.
We are now "on our own" as far as caring for the PICC line, and we've had no problems so far. Changing the dressing is easy once you get the hang of it.
Doing the actual infusion of Rocephin is very easy. I can do it by myself.
I'm also on orals for the L-form and cyst forms.
-AnnaL
Posts: 398 | From By the Salish Sea | Registered: Dec 2008
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posted
Just took a glance, is that Russian by chance? My brother lives there at least 6 mos out of the year.
Posts: 847 | From upstateNY | Registered: Dec 2007
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posted
I'm getting 2 gram vials of ceftriaxone for $10 each in the U.S., from a local pharmacy. (Same price as the Russian pharmacy Coltman mentioned.)
Posts: 398 | From By the Salish Sea | Registered: Dec 2008
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posted
B/f starting, I checked everywhere around here. Most places said they couldn't get it, the rest were almost $2000 for 2 grams a day for a month.
Posts: 847 | From upstateNY | Registered: Dec 2007
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The pharmacy I use is Rxtra Care (http://www.rxtracare.net/index.html) in Seattle. I don't know if they will ship orders, but you could call them.
I pay $10 per 2 gram vial of ceftriaxone powder.
The remaining costs each month are for supplies like sterile water to mix the powder, syringes, saline and heparin syringes to flush the line, dressing change kits, etc.
You can probably find syringes and dressing change kits way cheaper online than from a brick-and-mortar store.
Posts: 398 | From By the Salish Sea | Registered: Dec 2008
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posted
This is such a tough decision. I am currently trying to decide what to do myself.
My LLMD wants to do IV abx but I am just not sure. I don't feel we have really made much of a go of the oral abx yet and with the risks that come with picc lines etc I just don't know what to do.
This decision has been plaguing me since my LLMD appointment last week. No idea what to do.
-------------------- Sick since 10/2001. Tested CDC positive for Lyme 10/2008 through Quest and Igenex. Started treatment 1/2009 with LLMD. Lyme, Erichilosis, Chlamydophila Pneumoniae, Q Fever, Strep Syndrome and probably a few others I am forgetting. Posts: 451 | From Virginia | Registered: Feb 2009
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Yes, I do 2 grams/day. I'll check the exact amount I paid last month...
I bought 30 2 gram vials of ceftriaxone = $300
I bought an additional $154 in supplies, including water for injection (to mix with the ceftriaxone powder), a giant box of syringes, a giant box of saline syringes, a not-so-giant box of heparin syringes, and a box of needles to do the mixing of power and water. That brought my pharmacy charges up to $454 total.
I also bought a case of sterile gloves for dressing changes ($50) because the ones in the kit don't fit my husband, a case of Statlocks ($380), and some dressing change kits ($4 - 8/each). This was a pretty big up-front cost, because Statlocks are ridiculously expensive. However, the case I bought will last me for months.
Also, it took me a while to figure out what kind of dressing kit I preferred. (Turns out cloraprep irritates my skin, and I like one variety of Statlock better than another.)
Now that I know exactly what supplies I like and need, I can stop experimenting and find the cheapest supplier of things like the dressing change kits.
Obviously, some of the supplies will last a lot longer than 30 days, so I think my estimation of $600/month might have been too much.
[ 11-19-2009, 08:27 PM: Message edited by: AnnaL ]
Posts: 398 | From By the Salish Sea | Registered: Dec 2008
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Have you tried IM Bicillin? I tried 6 months of orals before switching to Bicillin. My LLMD says that most of his patients respond so well to Bicillin that IV is not needed.
Unfortunately for me, I'm not one of the patients who responded well to Bicillin. After seven months of hardly any progress, I switched to IV.
IM Bicillin is a cheaper option than IV, and even though it didn't work for me, I would say it's a good option to try before diving into IV, particularly if you want to avoid the potential risks of a PICC line.
-AnnaL
Posts: 398 | From By the Salish Sea | Registered: Dec 2008
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Amanda
Frequent Contributor (1K+ posts)
Member # 14107
posted
I am in process of trying to figure out if I should do IV.
They specialize in helping IV lyme patients, and they offer good prices. They will send you the IV med, along with all the bandages syringes, everything. Costs are very good, depend on what drug and dosages.
I called them and they are so helpful. Several others I know use this company, and have said they have called them with all kinds of questions and the pharmacists and staff are great.
-------------------- "few things are harder to put up with than the annoyance of a good example" - Mark Twain Posts: 1008 | From US | Registered: Dec 2007
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I was quoted $600 a month where I get my rocephin and supplies now (doing push) but already mixed. Somehow though, I am not very trusting of them.
Right now, they are billing my ins way over $3000 a month (for the ball, which has really spoiled me).
I just don't know if I'm up to this mixing etc right now. I did alot of research b/f, but never did I find prices like some of you are saying, at least not in my neck of the woods.
Posts: 847 | From upstateNY | Registered: Dec 2007
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Don't be scared off by mixing the drug yourself. It is really easy.
The only tricky part about going it alone is having someone learn how to do your dressing changes.
The home-visit nurse taught my husband how to do it. She did it for us the very first time, but every time after that, she would walk my husband through it so he could get practice while she was still there to make sure we did it right.
Do you have a family member or friend who could learn how to do the dressing for you?
Posts: 398 | From By the Salish Sea | Registered: Dec 2008
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posted
I have to find one. Actually, my bandage change is really quite simple now.
First, I was allergic to the adhesive on the statlock...don't use one anymore.
Then allergic to the tagaderm...use a Sorbaview 2000, very small, and a biopatch. Then a little xtra tape on the bottom to hold the line in place better.
i still might be able to talk hubby into it. It scared him away when we had to go to ER, and 2 nurses were working on the statlock.
Posts: 847 | From upstateNY | Registered: Dec 2007
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Have you tried IM Bicillin? I tried 6 months of orals before switching to Bicillin. My LLMD says that most of his patients respond so well to Bicillin that IV is not needed.
I dont think bicillin (at least in the doses typically used - 2.4 -4.8 MIU/ week) can do anything to neurolyme. It just doesnt get to brain/CSF at those doses at all. Could be reason it did nothing to you and you feeling better on IV
Posts: 856 | From MA | Registered: Jul 2009
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posted
This is good info and the timing is EXCELLENT.
My friend is about to lose her insurance support for rocephin. She can't afford it without it.
She was warned off by the pharmacy selling the premixed roceph about mixing her own. Probably because they would lose the business.
She already has a port installed, so injecting is not a problem.
She had problems with the shipping of the premixed Rocephin. It was not clearly indicated on the box that it needed to be refrigerated so the receiving agent didn't store it properly. Many shipments spoiled. UNFORTUNATELY SHE WAS NEVER TOLD HOW TO KNOW IF THE ROCEPH HAD SPOILED SO SHE INFUSED IT WITHOUT KNOWING!!
UGH.
Anyway, anyone else have experience with mixing their own?
Thank you
James
Posts: 872 | From New York City | Registered: Jun 2008
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I mix my own Rocephin. Very simple process. (Easier than mixing up generic Bicillin, even!)
Supplies:
- One vial ceftriaxone (2 grams in my case) - One vial sterile water for injection (20 ml in my case) - One 20 ml syringe - One needle (pretty much any gauge will work; I'm using 20 gauge)
Attach needle to syringe.
Insert needle into vial containing water and draw up water into syringe.
Insert needle into vial containing powder and inject water. Remove needle.
Shake vial until ceftriaxone is fully dissolved.
Stick needle back into vial and draw up the now-mixed ceftriaxone liquid. Done!
If you wanted, you could change out the needle between bottles to maximize sterile conditions. And needles are really cheap, so I often use three, one for each insertion into a vial.
After I've got the fluid in the syringe, I just infuse as usual with my PICC. Don't know how a port works, but I assume once you've got the syringe full of medication, it'll be clear what to do since your friend has been using pre-mixed stuff.
Many of my LLMD's IV-using patients mix their own ceftriaxone because of the problems with insurance.
-AnnaL
Posts: 398 | From By the Salish Sea | Registered: Dec 2008
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quote: my husband, a case of Statlocks ($380), and some dressing change kits ($4 - 8/each). This was a pretty big up-front cost, because Statlocks are ridiculously expensive. However, the case I bought will last me for months.
What are statlocks used for and how often you have to change them
Also sterile water seems bloody expensive - I mean its just water passed trough a sterile filter . Friggin ripoff .You can even make it yourself :
quote: What are statlocks used for and how often you have to change them
Statlocks are used stabilize the PICC line where it comes out of your arm. I change mine every week when I do the dressing change.
I purchased a case because there was one type that I strongly preferred (the foam pad), while the kind I could get through my LLMD (the tricot polyester) made my arm itch like crazy. Fifty come in a case.
-AnnaL
Posts: 398 | From By the Salish Sea | Registered: Dec 2008
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The nurse who showed me how to do it advised that I push one ml every 30 seconds. This did not work at all for me! I ended up very dizzy and started slurring my words.
So I slowed down and the problem went away.
I usually push the 20 ml over 20 - 30 minutes. Often I'll watch a television show and I'll be distracted so I end up taking 40 minutes. Slower is better for me.
I infuse at night when I've got extra time. Sometimes I'll infuse while eating dinner if I'm pressed for time. Take a few bites, push 1 ml. Eat some more. Push a little more. Posts: 398 | From By the Salish Sea | Registered: Dec 2008
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