jamin ? about LDN

Discussion in 'Fibromyalgia Main Forum' started by lukro, Jun 21, 2010.

  1. lukro

    lukro Member

    I know that you were on LDN a few months ago. May I please ask you a few questons?

    What were you on LDN for? Did it help? Why did you quit? How long were you on it? What dose did you take. Did you decrease your thyroid meds? Are you on the same dose of thyroid that you were on before you started LDN or less?

    I know some of this info I can unearth by searching, but I'm too tired today. I sincerely appreciate your answers.
  2. lukro

    lukro Member

    Do you have RA? LDN is suppose to be very good for RA. I don't know about its use for other forms of arthritis, though.

    Do you have hashimotos or are you simply hypo? You did not reduce your thyroid meds at all? Didn't you feel it rev up your thyroid?

    If you had a bad experience, why do you want to try it again? Sorry this is such a nosey question, I'm just very curious. I probably should have started on a smaller dose. My MD generally starts harshi patients on 3 mgs, but I told him that I was extra sensitive so start me lower.

    On a good note, I was in a fibro flare when I started and the pain has subsided. Maybe it's a coincidence.......

    Thanks again.
  3. lukro

    lukro Member


    Thanks, again, for your reply. I think I'm going to be OK on the LDN. I should find the group you mentioned. I would like to compare notes with others. My MD is more-or-less experimenting with me. I agreed to this because I had read that it works for those w/ fibro and hashis, and I'm really sick and tired of being sick and tired. Know what I mean?

    I should feel better tomorrow; I'll be decreasing my Armour's thyroid even further.

    Please keep me posted when you start again.
  4. SnooZQ

    SnooZQ New Member

    'Scuse me for jumping it. I started on LDN nearly 2 yrs. ago.

    I have fibro & arthritis due to several causes. At the least, OA & doc thinks sero-neg RA (by imaging studies of damage to joints). There's also an undifferentiated collagen vascular disorder that doesn't strictly fit any current Rheumy definition, tho' in past I've had dxs of Lupus & MCTD. I also have Sjogren's symptoms.

    Hormone balancing was very helpful to me before I started on the LDN, however with LDN I have less daily pain, few flares & shorter-lived. More energy & drive. I'm able to get A LOT more done & don't have that hit-the-wall & collapse energy crunch after 20 min. any more.

    I also have Hashi's & am on thyroid meds. I found it helpful to start at a low dose & increase slowly. Currently I am taking 4.0 mg./day LDN. I was on Levoxyl T4 thyroid meds when starting LDN & did not reduce my dose. However, I am in the process of trying to adjust to Armour & I probably WOULD have decreased that when starting LDN (I am very T3-deficient but also very sensitive to it: go figure.)

    I know the LDN gave Jam some bad side effects, however I've found it pretty tolerable. A little nausea at first, and each time I increased the dose. And I did need to increase my melatonin on LDN, it caused me to wake at 2 a.m. for a while.

    I'd be happy to offer support to you in any way I can.

    Good luck with the LDN project!
  5. lukro

    lukro Member

    Where do you get your LDN? How much do you pay for a month's supply? The local compound pharmacy seems expensive to me and I'm not sure if my insurance will cover it.

    I do feel less pain and more energy, and certainly hope this continues. So you've been on LDN for 2 years and it is still working for you! That alone is very encouraging for me, and I'll stick with it for now.

    Thanks again for your response.

    edited to add: did you get dizzy at first? I have been dizzy most of the day.[This Message was Edited on 06/23/2010]

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