A PICC line and IV Rocephin were the only abx that knocked out my seizures and gave me most of my memory back. I was so ill before this and no oral abx or combo was keeping my symptoms down. After, I believe, 6 weeks of this, I was substantially better. This was decades ago and sadly, not many docs will script this nor insurance pay for. These tic born illnesses are being swept under the rug and people are suffering terribly and going to hosts of doctors to treat various symptoms yet never getting better. Neuropathy is one of the primary symptoms I hear about and always tell people to get a test for all the tick born illnesses.

I wish you well with the IV and line. ...don't worry about the risks....I know tons of people who used them with no problem. Glad you are able to work...that is terrific.
D.

I'm glad to hear that IV Rocephin worked for some of your symptoms. It seems that for the real serious cases, IV is the only thing that gets some people better. I will likely be paying for a lot of this IV stuff out of pocket. I'm trying to figure out what kind of financial cost I'm looking at. It seems that it can be anywhere from 750-1500/month or more. I guess it is what it is....as long as I can keep working during this whole ordeal. I'm the breadwinner of my household so if I go down, the whole ship might sink.

I think there will be some trying and dark times ahead of me with IV antibiotics. I'm lucky that I can work from home sometimes, else I would have never have been able to stay employed. Did your face pain and disequilibrium ever get better with treatment? I know that we both share some of the same facial symptoms, which is some of the worst pain that I have some days.

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.

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.

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.

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

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.

Gosh the face pain is the worst, isn't it? I wonder why some people get worse after antibiotics. We need more research.

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.

Thanks for the tips and support!

So, my 3 weeks of doxy is just about to finish and i feel that there hasnt actually been any improvement in my symptoms after all.

Although there was initially some scabbing of the skin over some of the problem areas (my fingertips), these cleared up quite quickly without significance and now im worried now that perhaps my Lyme diagnoses was incorrect, and that the 2 positive test results i had were false positives.

I have another appointment with my doctor in 2 days time to discuss how the treatment went and im wondering what to do next. Should I push to continue the Doxycycline and see if i get any results from a longer trial, or should I ask to be retested, maybe with a broader test for other infections such as bartonella?

Could a positive test have actually indicated another type of infection other than Lyme disease?

Thanks

you have/had open sores on your fingertips?

This link explains what might be happening to give a false positive result:
Lyme Disease Test

great! that's exactly the kind of info i needed. Thanks Mrs D

But no, i never had open sores on my fingers, just specific areas of skin on my fingertips about the size of a pea, which are hypersensitive. It was these areas that dried out and hardened during the first week of the doxy which lead me to think it was doing something. Unfortunately, they healed just as quickly and went back to being hypersensitive again :/