Hi there, I'm from NC too! I've never head of IV abx not being available here, we just haven't tried them yet due to costs. Actually I do know of at least one person with lyme here who did IV abx now that I think of it.

I don't think it is possible to stay positive every single day, while still being honest with yourself. Today I was just musing about how overwhelmed I feel and how burned out and angry, and how I just want to feel happy and not have all this negativity in me. For me, going to a counselor helps so I can process all of it, because it is just a lot. Also talking to other people with chronic illness can help, although sometimes it feels like it can be a pity party too. But maybe sometimes that is ok.

I wish I had an answer for you. Thanks for posting! I hope you are doing well. If you are interested in a NC support group let me know, and the next time I hear about a meeting I will pass along the info :)

Thanks for your post 27949, I've wondered the same thing myself.
It's good that you pray every day. That's a very positive thing.
I keep inspirational books, cd's, and dvd's available. Also, I
spend time with meditation. But that doesn't mean I always want
to watch certain tapes. I agree with Wheelwatcher about sharing
with someone else who's in the same or similar situation. Or
finding a support group. But, we're human. We have big
challenges. There's nothing to say that we have to feel always
positive all the time. Even if I was totally 'well' there's no way
that I would always be positive. Life has many ups and downs
and trials. I just feel we do the best we can with what we
have and have compassion for ourselves and others when
we're going through what we are. Love ourselves regardless
even when we feel really miserable or angry or whatever it
may be we're feeling at any particular time. Or write
our concerns on here because others are going through the
same things that we are.
I am very sorry to read that your
pain is unrelenting. That I can only imagine would take
everything one has to deal with that. I hope it gets better for
you. Have you gone to some pain management doctors?
Hang in there.
. .

Thanks for the replies! Yes I do definitely find it helpful to 'talk' with others in the same position. It really is such an isolating disease at times. I know my husband does his best too, but like you said, he is only human and going to get frustrated and angry at times too.

It helps so much to know there are others out there fighting the good fight. I do need to learn how to be more compassionate and patient with myself. Seems as though I've hit a plateau in my treatment, no worse (Thank God) but no better either.

Had to stop my med for Babesia due to losing my health insurance, it is way expensive. But now looks like I won't have coverage again for at least 3 more months. Thinking I need to get back on it sooner rather than later. Don't want to lose ground.

Yes, I do see a pain dr, he is a big help too, but the meds only can do so much. Find it hard to take time for myself to exercise or even do stretching. No energy = no motivation.

Lately having neuro symptoms again. Trouble concentrating, typing, mixing up letters, and just plain thinking straight generally. Maybe going through a growth cycle, fever too. OK so maybe I am a little worse and not wanting to accept?

I am grateful for this site and people like you who care and take time for others. It is a blessing!

I don't know if you have looked into it, but there are supposed to be "high risk" pools insurance for people who cannot get private policies. I know for the federal one, one of the things that qualifies you is being out of insurance for more than a month (around 2 months I think). In NC, you just have to prove you lost your insurance (statement from the insurance) and then have proof that you applied for a policy individually and were denied. Usually that is easy enough, if you apply online through BCBS of NC, "lyme disease" is the #6 disease I think that they ask you about on the long list of things they instantly deny you coverage for. They right away give you a pdf letter that is your proof of denial of coverage.

Have you ever taken Artemisinin for babesia? It is an herbal remedy so insurance doesn't cover it anyhow. Many people say it is very effective, but man it can be a doozy of a herx.

I have a friend on the NC high risk pool insurance right now. It is not super great but it is better than no prescription coverage I would think.

Yes, thanks for the info. I was denied by CIGNA due to CLD and applied for the NC state option. Well they would only approve me with a 6 month waiting period for pre-existing. Since I was without any coverage for more than 63 days. So now I have to wait another 3 months and apply for the Federal option. (6 months without to be eligible) Hoping I can get some kind of rx help in the meantime.

Waiting on an app for disability filed in Nov 2011. Been denied 2x's so far. Now waiting for a hearing before the judge. My attorney thinks he'll be able to help me. I sure hope so. Been unable to work since Oct 2010. Long time to be without an income!

Yes, I do take Artemesinin for the Babesia 5 days on 5 days off is what my LLMD told me. Also broke down and filled my Malarone rx rather than wait another 3 mos. Don't want to get too far behind in my treatment protocol only about 1-2 months into treating the Babesia. We already hit the Bartonella really well.

Thanks so much for the info, it's very helpful to me, and others too I am sure!

There are 'patient assistance programs' for people who can't afford medications.

Many drug manufacturers offer these (I'm sure they get brownie points for them with the IRS).

There are hoops to jump through of course. I can't remember the ones I had to jump through when I received a drug thru a patient assistance program---- can't even remember the drug it was so long ago.

Check this one out:
http://www.rxassist.org/

That's not the only one---- http://www.needymeds.org/indices/pap.htm
is another one, but I think they all funnel down to the same manufacturers and drugs.

If a person is low income and has no insurance------they might qualify. As I remember the 'low' income wasn't at poverty level, or I wouldn't have qualified.

Most doctors will help you---- in fact the doctor HAS to verify the facts and sign off.

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