posted
I seem to frequently go back and forth over whether I'm making the right decisions about my healthcare.
I got sick in 1999, got diagnosed and started treating from 2006 to 2009. I was in remission for all of 2009, thanks to a combo of oral and IV meds, and a new doctor.
I relapsed, or got reinfected, or whatever causes people to get sick again in 2010. And it feels harder, this time.
I've done oral antibiotics, and I've done IV. Thanks to some allergies, we've exhausted my options on the IV, and I'm getting my line pulled today. This is my... 5th or 6th round of IV meds, I've lost count.
I feel like I make some progress, and then plateau, and then backslide. Rinse and repeat. I tried going off of antibiotics back in October, and while my fatigue and some other general symptoms actually improved, my pain got worse. So back on the antibiotics I went, and it's been up and down, but overall I'm improving.
So sometimes I think if I'm making progress, even if it's small, I should stick it out. Keep doing what we're doing, stay with this doctor. Sometimes I think after four years of treating, I should feel better than this.
I don't know, maybe it's just a need to vent. The first round of IV I did, I felt so dramatically better, but it seems like every round after that helps a little less. So I'm sad, and trying to not feel defeated about it.
I don't know what I'm doing.
Posts: 306 | From Brownsville, PA | Registered: Jul 2007
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
Ladycakes, this illness is so tough. You're not alone.
"I don't know what I'm doing."
It sounds like you're doing the best you can. It's so anger inducing when you try to do the right thing and it just doesn't work.
I understand it's so frustrating when what worked the first time doesn't work the second time.
It's okay to feel defeated. Let yourself grieve, then pick yourself up again.
We're all survivors and I'm sorry the battle with the IV was lost, but you haven't lost the war! You're still here and you're strength to deal with the next healing challenge will come back.
I'm not going to type my whole story, but just how my doc changed gears the last time I went. I hope it will be helpful/hopeful that not all options are exhausted.
I got my Lyme into remission the first time around with oral antibiotics.
I got reinfected last year and the orals have done very little this time around and I'm horribly allergic to many. (which is frustrating to both me and the docs). I can't do common combos.
I got the "you're a difficult patient" speech my last appointment.
I'm allergic to amoxicillin (full blown rash and neck swelling), but my doc just started me on bicillin LA shots, along with ketotifen to help with drug allergies.
So far (knock on wood) I'm tolerating it.
Posts: 2839 | From California | Registered: Jul 2012
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posted
Ask around (here or anywhere) to make sure you are with one of the best LLMD's. If you are being treated in PA, there is huge discrepancy between the abilities of the LLMD's there.
Hoping and praying you get the help you need.
Have you been treated for all coinfections?
Moving this to Medical Questions for more help.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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