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Originally Posted by Diandra
May I suggest, if you are doing IV abx for the first time, you should prepare for the possibility of a herx. They gave me pretty high doses of Rocephin and
I did herx and it was tolerable but, I was already off work and a family member came to stay with me so my husband could work so I was well taken care of. Since you are the breadwinner, and if your employer is not understanding, maybe take some vacation time.
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Yes, I was worried about that. I know my first dose will be given at my Lyme clinic so they can watch me. I will take some time off work. Prepare for the worst, hope for the best.
Quote:
Originally Posted by Diandra
If I had to do it all over again, I would do IV again in a minute. I was not "cured" but it brought the pain level down and helped a lot of symptoms, the worst being seizures,migraines, insomnia, narcolepsy and neck pain so bad, I couldn't sit upright. It also brought back some cognitive function I had lost and just made me feel, cognitively, a bit more like my old self.
The equilibrium got much better but sadly, pain in my face, which is actually the pain in the entire right side of my head, was better while on IV and for several months afterward but, it came back. I had to stop all abx because my c.diff issues were becoming very serious and my docs advised no more abx, ever. It is the main reason I have too stay on gabapentin or Lyrica. I stay on the lowest dose possible of Lyrica...it just takes the edge off. I also take opiates for the pain.
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Gosh the face pain is the worst, isn't it? I wonder why some people get worse after antibiotics. We need more research.
Quote:
Originally Posted by Diandra
Also, if you are paying for it yourself, I knew folks who had no insurance and had to be resourceful. One woman went right to abx maker and got a discounted price but this was 15+ yrs ago. I just had to purchase some of my cancer meds from Canada because my insurance would not cover them and that is another option although I know the PICC line insertion and nursing costs are what rack things up. I also knew people who enlisted family members who were nurses to help manage the PICC line rather than pay an agency.
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I think I'll likely get 4-6 weeks of IV paid by insurance due to my second positive Lyme test after 1 year of orals. I have a friend who is a nurse who can help manage my PICC line (my insurance will only pay for a nurse if I'm bedridden). I guess I'll likely need 3-6 months of IV, so I'll definitely explore all options to keep the cost down.
Quote:
Originally Posted by Diandra
If you do the PICC line, hydrate like crazy the entire day before you have it in...it helps insertion. Prior to my PICC line, I had a midline and my nurse not only had me hydrate, she had me wrap a hot/wet large towel around my arm for 20 minutes prior to insertion...it REALLY helped. I have tiny, crappy veins. I was so scared before the first time because I am such a wimp about needles but they taught me how to do the Rocephin twice a day, flush with saline and heparin and it was easy. Seriously, if I can do it, anyone can do it.
Best of luck. Please let me know if you decide to do it. I'll be your cheerleader 
Diandra |
Thanks for the tips and support!