HI all & anyone, I'm new to the group. Newly dx by Igenics off the charts.
I'm awaiting picc line install date. My LLMD wants to start with Claforan VS Rocephin.
Anyone tried Claforan? 85% efficacy rate 15% margin seems high to me. But Claforan doesn't effect the gallbladder like Rocephin does.
My symptoms are majority neurologic, pretty severe. Been undiagnosed for 11 years and was recently bit again in March of this year and could inquire about tick related illness. Got very sick and needed medical serious medical attention.
I have tried zithro and rifampin with anti fungals. after 9 weeks and no improvement I was taken off to let my body rest and prepare for IV.
I was taking many Lyme Supplements. But when I was taken off oral abx my Dr added BLT supplements within 7 days I was broken out in massive hives from head to toe. A severe allergic reaction. So I had to be taken off all Lyme supplement to let my body recover.
Any information would be helpful.
Posted by Messa (Member # 38065) on :
I'm doing claforan shots. Only been on them 2 weeks so I don't know yet. Let me know how it goes. Sorry about all your allergic reactions. Hope you feel better soon 😊
Posted by KHenkel (Member # 39033) on :
How do the shots feel? My LLMD says they are very painful but they last longer than IV.
Posted by Messa (Member # 38065) on :
Well I use Lidocaine mixed with the claforan so it's not too bad. I have to be honest though. I haven't gotten up the courage to do it myself yet. My poor husband.
If I had the money I would go for the iv so I wouldn't have to be stuck so much. I'm doing two shots a day. The shot itself doesn't hurt but my it gets sore :/
Posted by lyme-o (Member # 35115) on :
Hubby had bad allergic reaction to claforan. Breathing, rash, you name it. And it was working for him. Big disappointment
Posted by KHenkel (Member # 39033) on :
Lyme-o Did your husband start rocephin instead? I'm sorry to hear that. I'm concerned about reaction too. I was shocked when I broke out from head to toe severe hives from BLT. :-(
Messa, You are brave! Keep up the good work. I can't stand needles so all of this is hard to navigate through. But there's nothing more that I want than to be better.
Here's to better days for all of us!
Posted by kgg (Member # 5867) on :
I loved Claforan! I was on it a month. Then I started having sudden pain in my arms and legs when I started the IV drip. My NP, at the time, called it ischemic pain. Anyway, I had to switch to Doxycycline, which was not my favorite.
I liked the idea of Claforan over Rocephin because I wanted to keep my gall baldder which Rocephin is notorious for bothering.
Hope you have a good response to it! Karen
Posted by Messa (Member # 38065) on :
When are you having your picc line put in?
Posted by KHenkel (Member # 39033) on :
Thanks Karen for sharing your reactions! That's what I am looking for, the potential side effects and efficacy! I've been sick so long I can't wait to feel better but I realize there can be side effects and risks.
What are some of the die-off reactions people have had using IV meds? I also wonder. And Herx?
I don't have an install date yet Messa. Home infusion company is still dialoging with insurance company. BLECK!
Posted by lyme-o (Member # 35115) on :
no, hubby had already been on rocephan. I think he was switched to IV Clinda at that point. Hes been on most of them. Always plateaus
Posted by KHenkel (Member # 39033) on :
Lyme-O
With every tx your husband has plateaued? Does he get a little better or not at all? Does he have Herx or die off symptoms while on abx? I'm sorry that must be so frustrating! Lyme Stinks!
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