This is topic Am I doing the right thing? in forum Medical Questions at LymeNet Flash.

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Posted by ladycakes (Member # 12619) on :
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.
Posted by Judie (Member # 38323) on :
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.

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 your strength to deal with the next healing challenge will come back.

It's okay to feel defeated. Let yourself grieve, then pick yourself up again.

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.

[ 02-06-2014, 06:47 PM: Message edited by: Judie ]
Posted by Lymetoo (Member # 743) on :
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.
Posted by ladycakes (Member # 12619) on :
The guy I'm seeing now was recommended to me by this group, so I think he's good? I've never heard him say any of the duck code words that send folks running for the hills, at least.

I was terrified to go off of the IV so soon, but I'm actually doing well so far. He added another oral, since he's always had me on at least two meds at a time.

My bloodwork for coinfections came up with nothing, even though my lyme bloodwork came up very much positive. So he's treated those based on symptoms. As far as I know, he's specifically treated for bartonella, although some of the medicine combinations I've been on would have hit others.

I'm creeping up on about 90% functioning now, which is amazing. I feel like most of what I call my 'satellite' symptoms have either improved drastically or disappeared altogether. What I'm left with is some fatigue (always the hardest thing to kick), and pain.

I just can't seem to get that last little bit gone. And honestly, if my health would just hold steady here off of my antibiotics, I'd be fine with that. But once I go off of them, the pain increases and the other symptoms come back. I'm JUST sick enough that I have to keep taking all these pills.
Posted by Lymetoo (Member # 743) on :
Have you tried addressing candida/yeast in a big way? Nearly everyone is left with that after months or years of abx.
Posted by Tbrown2 (Member # 42446) on :
Lymetoo whats a non prescription way to treat yeast that wont interfere with abx besides diet. My LLMD doesnt think I have a yeast issues as Ive been examined and have no obvious symptom but I have always wanted to treat it because it cant hurt right?
Posted by desertwind (Member # 25256) on :
I can throw some suggestions out to you till lymetoo chimes in.

For Candidas/Yeast natural route I like;
Byron White A-FNG
Oil of Oregano
Olive Leaf Extract
Pau D Arco
Carprylic Acid
CandiGone (has a nice combo)
Black Walnut

A lot of these hits parasites as well.
Posted by phyl6648 (Member # 28522) on :
I feel the same way. I haven't had the treatment you have and have fallen short due to cost and not sure what to do. I just don't understand all this and feel so defeated.

No answers but sure can relate.
Posted by CherylSue (Member # 13077) on :
Keep treating, and do not give up. You may have to be on abx for sometime. A good llmd will now what abx to give when for
your case. One protocol does not fit all.
Posted by Robin123 (Member # 9197) on :
Re candida, do you crave sweets and bread? That's a pretty good sign that you have it.

If so, it's a good idea to go on a noncandida diet - ie, one that doesn't feed the yeast. I did a step-down diet - no sugar, but ate sweet fruit. After I got over the sugar craving, - took about 10 days or so, then I gave up the sweet fruit. The diet is mostly vegetables and lean meat, if you eat meat. You can google the diet.

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