Recently diagnosed with Lyme, Babesia and Bartonella. Scheduled to begin IV Rocephin next week after several months of severe nausea and no improvement on oral antibiotics, and worsening neurological symptoms. My doctor has been extraordinarily human in working with me and understanding the constraints of having no health insurance. Aside from the cost-prohibitiveness of having a PICC line and the care associated with it, we live on a farm and what little energy I have I usually spend at the barn - don't believe I'm the best best to remember not to lift too much and/or to not (albeit) inadvertently keep the site clean. My doctor has presented the option of coming in to the office four out of seven days a week to have the medication administered through an IV. Could anyone offer their thoughts or answer some of the many questions I forgot to ask?
Can/will they use the same IV site for the four days or start a new IV each day? Provided I have no allergic response, is it possible I might be able to go in for the first day each week to have the IV inserted and administer the next three days at home? Can I expect to be able to drive to and from the appointments? (Office is 30 minutes a way and I don't have anyone to take me) If my experience with herx reactions was pretty bad with the oral antibiotics, does that predict the same for IV therapy? Any additional things to be aware of I haven't even thought to ask yet?
So appreciative of the challenges all of you have faced and grateful for the time everyone still finds to offer their experiences and support -
DaisyJane
Posts: 6 | From Northeast | Registered: Nov 2013
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lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
Rocephin always worked for me, problem was I relapsed when taken off. I used to go to my old llmds office 7 days a week to get infused with butterfly needle Iv. It's tough to find a different spot for the needle so I used the same spot everyday on each arm. When I stopped going to her, new llmd did a picc line, I had three in a matter of 6 mos, I developed a tape allergy. I'm doing bicillin IM shots now, 3x a week, rocephin was great, lost my gallbladder from it. U might have to get a sonogram if u stay on it longer term for developing gallstones. Be well, God bless.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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gmb
Unregistered
posted
DJ,
Could you consider IM Rocephin instead? IM Rocephin would be covered under an Rx plan if you have one, and supplies would be a lot cheaper than IV. I've seen studies posted here stating pretty equal blood concentration levels.
Also take Actigal while on Rocephin to help protect your gall bladder.
posted
Thanks all for such quick replies and great info - Is Actigal a vitamin? supplement?
Think I would prefer the catheter - Greta, did/do you have the option of administering at home and/or has anyone had any trouble driving themselves back and forth?
I will definitely ask about IM instead, would be so much easier...
Also, perhaps this is well known but will share just in case - I was checking prices on Rocephin to fill script and came across goodrx.com that offered a coupon - imagined it probably wouldn't work but asked the pharmacist to check just in case - they accepted it and the price dropped from what would have been the cash price of $1.829.00 for 20 vials to $628.00 - I also saved another 65% on the rest of the meds which came to over $700 just yesterday -
Lyme in PUtnam - you're the 20th person I've read to lose their gallbladder - in addition to the Actigal, are there any other suggestions/warnings about how much, how long etc?
Again, thanks so much - I don't know how each of you have managed but can only imagine your fortitude and compassion, please be well,
DaisyJane
Posts: 6 | From Northeast | Registered: Nov 2013
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lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
My doctor didn't believe in Actigall, I was stupid and saw this as a lifelong treatment, so I willingly had my gallbladder taken out.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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gmb
Unregistered
posted
DJ,
Actigal is an oral Rx. I was on IV Rocephin for 14 months with same PICC... no issues.
posted
My son received Rocephin, I think by injection and he had a major yeast infection the next day.
Posts: 803 | From USA | Registered: Oct 2013
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