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Posted 8/24/2018 12:42 AM (GMT 0)
Hey everyone!!

Sorry that I have been absent from the forums for the last month or so. I am leading my first big project at work which has been pretty stressful and I have also been trying to change my lifestyle.

I really have been focusing on ignoring my diesase as much as possible and not make excuses for myself. I have been doing the couch to 5k program so I have been running 3 times a week. It hasn’t really helped my fatigue, dizziness, brain fog or anything like that, but the biggest thing is that it proves to me that no matter how crappy I feel, I can still get out and run a couple miles. I think this is really good for the mental aspect.

I am also currently doing a three night at home sleep study to rule out sleep apnea. It is something my dad and brother have and could be some of the cause of my fatigue, and brain fog. Who knows!

Tomorrow I am also going to be starting LDN (Low Dose Neltrexone) so I am pretty excited about that too. Does anyone have any experience with this?

Thank you all so much for being with me through this journey of trial and error. Sorry that I have been MIA lately. I’ll try not to be a stranger smile
Posted 8/24/2018 12:51 AM (GMT 0)
Good for you with the running!



I tried LDN - this was prior to lyme diagnosis....just to help with my pain.

Unfortunately it didn't work for me. I started low dose and slowly increased it.


Hope it works for you!
Posted 8/24/2018 2:06 PM (GMT 0)
Glad you are updating us. Are you still on Mino or Rifampin?
Posted 8/24/2018 3:34 PM (GMT 0)
Good luck, glad to hear you are making some progress trying to ignore this disease...thats a good step in the right direction. I am trying to do the same over here too.

you still treating the bartonella. I am about to start month six with Rifabutin, so far so good.
Posted 8/24/2018 4:42 PM (GMT 0)
Great to hear from you. I'm glad to hear you are finding things that are empowering and mentally helpful. This is how I felt getting to consistently do weight-lifting this last year. It really helped me mentally, and made me feel good.

I hope the LDN proves helpful, I think it's helped me.
Posted 8/25/2018 12:02 AM (GMT 0)
Thank you all so much for the kind words. You are all so awesome!

I definitely would not say I am healed, in fact I'm not even sure I am any better than I was 6 months ago, but I do know that part of it is a mindset and I'm trying to break that rut.

Girlie - I am sorry that you didn't have luck with LDN. I am starting at 1.5 milligrams and working up to 4.5 slowly. Each dose is taken for a full month before increasing.

Missouri and SierraDon - I am currently on Biaxin and Mino. My doc wanted me to stop Rifampin for now to see if this combo works for me. I asked to start Rifabutin but my doc said she isn't very familiar with it..

Sandyfeet - I will definitely keep everyone updated on my LDN experience!

Sebreg - Thanks so much! I agree, the mental aspect is huge. Glad to hear that LDN has helped you!
Posted 8/25/2018 12:09 AM (GMT 0)

NicHostetler said...
Thank you all so much for the kind words. You are all so awesome!

I definitely would not say I am healed, in fact I'm not even sure I am any better than I was 6 months ago, but I do know that part of it is a mindset and I'm trying to break that rut.

Girlie - I am sorry that you didn't have luck with LDN. I am starting at 1.5 milligrams and working up to 4.5 slowly. Each dose is taken for a full month before increasing.

Missouri and SierraDon - I am currently on Biaxin and Mino. My doc wanted me to stop Rifampin for now to see if this combo works for me. I asked to start Rifabutin but my doc said she isn't very familiar with it..

Sandyfeet - I will definitely keep everyone updated on my LDN experience!

Sebreg - Thanks so much! I agree, the mental aspect is huge. Glad to hear that LDN has helped you!

I like your idea of increasing dose after a month - that may be why it didn’t work for me - I increased it faster than that.
Posted 8/25/2018 4:20 AM (GMT 0)
Nic- Good for you.

Definitely need to keep moving (if no injuries), thats wear the more physically active people might have the upper hand with this, even if this means changing/adapting a little, as the desire to keep moving can be a strong one. As soon as you stop, you can go downhill rather quickly. As far as the mindset, think of it as a handicap instead of disease. Never cared for the name lyme "disease", sounds to terminal.
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