Some symptoms are better, some are getting worse

It is a bit confusing

Ok, for the members that haven't been here long: I have been ill for 20 years, and started treatment 23 months ago. I did 15 months of different abx combinations. After that, I went on a modified cowden protocol.
I haven't been better in all that time: no improvement in pain, constant herxing and pain everywhere that is driving me crazy, detoxing problems, huge inflammation markers.

A month and a half ago I told my doctor I couldn't handle the pain anymore. Painmeds weren't doing anything, not even the strong stuff. He then put me on Low Dose Naltrexone.
The day after I took the first pill, I woke up and couldn't believe that the myalgia was better. That hit by a truck feeling was better!!! Over the weeks that passed by I feel that my pains are slowly getting better. Not every single day, but there is an improvement.
I'm getting some hope of getting better...
There are a few side effects I think: I'm more tired (could be because it is also an immunity booster), my food intolerances are getting worse again.
Sooooo.... my joints are less painful, my muscle pain is decreasing. that is a huge relief.

I had erythema nodosum for 20 years. Nobody ever found the cause of it. I was diagnosed with Yersinia beginning of this year, got treated, and the erythema nodosum has been very calm since. No flares so far. Fingers crossed...

My neurological symptoms are getting worse though: more migraine attacks, several migraine auras per day, more sight problems, more problems talking, reading, concentrating, short black-outs, etc... More tired. Heartrate is almost all of the time 112 bpm.
Inflammation hasn't gone down yet, I'm still swollen all over. And my dr suspects Brucella too. Waiting for the results to be ready...

It's a bit confusing, but I think that maybe it is going the right way.... or at least, I hope so... It's kind of ambiguous...

One day I'm hopeful, the other day I'm confused and thinking this is taking soooo much time, is it ever going to get better?
I hope the LDN will continue to make a difference.

MarieLS

Marie - is it possible that you could be effectively treating the lyme, but now a co-infection is coming to the forefront?
The LDN could be making a difference - it is an immune booster I read.
I tried it several months back - when Lyme wasn't even on my radar..just for pain...but it didn't help me. I got more pain.
Glad you're getting some relief from it.

Hope you find an answer for your neurological issues that have popped up.
Hang in there!!!

Needhelp,
I'm rather enthusiast about the LDN, I'm hopeful. You're right, at a certain moment I was taking so much supplements... I stopped them all, and started up again, one by one, slowly. Everything that did nothing is off my list. Less stress (I'm so disorganized), less money to be spent. Thank you for your kind words. Are you feeling any better than a few days ago?

Girlie,
I've been thinking about that. My dr really insisted on getting tested for Brucella, even when I asked him to keep the testing at a minumum ($$$).

How long did you try LDN? I'm sorry it didn't work for you...

Lymebabe,

I hope he agrees to prescribe it to you!! I'm really enthusiastic about my pain levels (most of the days, some days are still really bad, but I'm relieved). But I start sweating like a horse around 10.30pm, my food intolerances are worse, and I'm more tired since I started it. I'm taking Samento (low dose, can't go higher), Banderol (low dose for now), Cumanda, Burbur, high doses of Omega3, Resveratrol, and I'm going to ad Sarsaparilla. And some drugs for my stomach and sleep.
I'll keep you posted on the LDN. I want to post a new thread aboutit, but I just want to wait another few weeks to see how it evolves. Dr that the results of LDN really depend on the person, genes play a big role in it.

There are a few good fb groups about LDN.
Let me know if your docter agreed!

Marie