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Does anyone use LDN? I’m meeting with a LDN Doc in a few weeks and am interested in knowing if it has helped many.
Hi Nikkoal!
Not sure if we discussed this so my apologies if you’ve heard this before.
LDN improved my GI symptoms within 36 hours, slowed the disease progression and decreased pain to the point I no longer needed a prescription pain med. There are several studies I can share if your interested. They establish LDN’s efficacy in Crohn’s, fibromyalgia, and pain management. The latest study shows its potential in treating cancer. It’s the immune-modulation and increase in endorphin production along with other factors that make it so valuable to me.
Kelly
Dx: Diffuse Systemic Sclerosis/SLE overlap, Raynaud's June 2013, Lyme August 2013
AP: Azithromycin (Teva) 250mg BID, May 2014, Clindamycin 600mg every 8 hours for 2 weeks July 27, 2015 - Aug 10, 2015
Minocycline (Teva generic) 100mg BID November 20, 2014
Meds: LDN 3.5 mg, Prednisone 5 mg (discontinued), Aspirin 81mg, Liposomal Artimisinin 50mg QID x 3 weeks, 4th week off, rotating (discontinued May 2015, restarted 2016 7 days per month), Daily Nystatin, 2 tabs BID, as a preventative measure
SupplementsThank you for sharing that, Calida. I’m pretty new here, so learning the ropes. So glad to hear it is working for you! How long have you been on the LDN? How long have you done the AP?
Dx: RA/UCTD April 2016
AP minocycline 100mg/day May 2016
Plaquenil 200mg BID
Hashimotos/hypothyroid 2007
Nature thyroid and iodine supp
Vit D 6000 IU/mag supplement/fish oilNikkoal, I’m kellyann99 at Inspire. Not 100% sure but I think we may have discussed my sister’s long battle with RA?
I’ve been taking LDN for almost exactly 3 years (July 2013) and started AP/Lyme treatment in April 2014. LDN gave me time to research a way out of this mess and so far, so good 🙂
Dx: Diffuse Systemic Sclerosis/SLE overlap, Raynaud's June 2013, Lyme August 2013
AP: Azithromycin (Teva) 250mg BID, May 2014, Clindamycin 600mg every 8 hours for 2 weeks July 27, 2015 - Aug 10, 2015
Minocycline (Teva generic) 100mg BID November 20, 2014
Meds: LDN 3.5 mg, Prednisone 5 mg (discontinued), Aspirin 81mg, Liposomal Artimisinin 50mg QID x 3 weeks, 4th week off, rotating (discontinued May 2015, restarted 2016 7 days per month), Daily Nystatin, 2 tabs BID, as a preventative measure
SupplementsYes, that’s me! Small world, lol. Yes, I have an appt with a doc in 2 weeks for LDN, and I found many success stories online and the LDN trus on FB. And I see a few members here have it in their arsenal, so I was curious how it helped. Good to see you here! Love reading your posts. So many strong, smart people here!
Kelly, I have been on LDN for four years now with good results, but I think I am paying too much for it. Can you tell me who supplies yours? Thanks, Liz
Sending a PM Liz, happy to do the same for anyone interested
Dx: Diffuse Systemic Sclerosis/SLE overlap, Raynaud's June 2013, Lyme August 2013
AP: Azithromycin (Teva) 250mg BID, May 2014, Clindamycin 600mg every 8 hours for 2 weeks July 27, 2015 - Aug 10, 2015
Minocycline (Teva generic) 100mg BID November 20, 2014
Meds: LDN 3.5 mg, Prednisone 5 mg (discontinued), Aspirin 81mg, Liposomal Artimisinin 50mg QID x 3 weeks, 4th week off, rotating (discontinued May 2015, restarted 2016 7 days per month), Daily Nystatin, 2 tabs BID, as a preventative measure
SupplementsNikkoal,
So happy to see you here! Keeping my fingers crossed the LDN works as well for you as it does for me.
Kelly
Dx: Diffuse Systemic Sclerosis/SLE overlap, Raynaud's June 2013, Lyme August 2013
AP: Azithromycin (Teva) 250mg BID, May 2014, Clindamycin 600mg every 8 hours for 2 weeks July 27, 2015 - Aug 10, 2015
Minocycline (Teva generic) 100mg BID November 20, 2014
Meds: LDN 3.5 mg, Prednisone 5 mg (discontinued), Aspirin 81mg, Liposomal Artimisinin 50mg QID x 3 weeks, 4th week off, rotating (discontinued May 2015, restarted 2016 7 days per month), Daily Nystatin, 2 tabs BID, as a preventative measure
SupplementsCalida,
At the beginning did you start with 4mg? Do you take it every day?
Thank you.
Linda LRA tried everything: Methotraxate, Arava, Humira. Pneumonia three times. Anemia. Very low iron. Hypothyroidism
AP from April 2014 till August 2015. No luck.
Current medications: Natural thyroid, Mobic, supplements,
vitamins and minerals.
MTHFR heterozygousLinda,
I think most Doctors titrate from 0.5mg up slowly until you find your optimal dose, usually between 3-4.5mg. There is a support group on FB with good info and resources. I’m looking into adding LDN and CBD hemp oil, which is legal here in the states. Some studies on CBD are showing it as an anti-inflam and immune-modulator. For myself, I think adding these to my minocycline could only enhance or compliment my treatment.
Linda, my primary has years of experience prescribing LDN and he started me with 3.5 mg, the standard dose he uses for most rheumatic diseases. I’ve tried 4 and 4.5 (suggested by a different doctor) but those doses were too high. 3.5 worked perfectly from the start and that’s where I’ll stay. I take it every night at 10pm.
Different diseases usually require different approaches. People with MS start high and usually do best at 4.5 while those with Hashimoto’s/hypothyroid issues start low and slow because they need to adjust their thyroid meds as their immune response stabilizes and they can’t afford to risk going hyper.
Dx: Diffuse Systemic Sclerosis/SLE overlap, Raynaud's June 2013, Lyme August 2013
AP: Azithromycin (Teva) 250mg BID, May 2014, Clindamycin 600mg every 8 hours for 2 weeks July 27, 2015 - Aug 10, 2015
Minocycline (Teva generic) 100mg BID November 20, 2014
Meds: LDN 3.5 mg, Prednisone 5 mg (discontinued), Aspirin 81mg, Liposomal Artimisinin 50mg QID x 3 weeks, 4th week off, rotating (discontinued May 2015, restarted 2016 7 days per month), Daily Nystatin, 2 tabs BID, as a preventative measure
SupplementsNokkoal, Calida thank you.
Calida, how did you know that 4, 4.5 doses were too high?
Linda LRA tried everything: Methotraxate, Arava, Humira. Pneumonia three times. Anemia. Very low iron. Hypothyroidism
AP from April 2014 till August 2015. No luck.
Current medications: Natural thyroid, Mobic, supplements,
vitamins and minerals.
MTHFR heterozygousCalida, how did you know that 4, 4.5 doses were too high?
Linda LPain. Within 2 days after starting the higher dose, I noticed an increase in back and joint point. I stayed on the higher dose for a month and 2 days after going back to 3.5, no more pain!
Dx: Diffuse Systemic Sclerosis/SLE overlap, Raynaud's June 2013, Lyme August 2013
AP: Azithromycin (Teva) 250mg BID, May 2014, Clindamycin 600mg every 8 hours for 2 weeks July 27, 2015 - Aug 10, 2015
Minocycline (Teva generic) 100mg BID November 20, 2014
Meds: LDN 3.5 mg, Prednisone 5 mg (discontinued), Aspirin 81mg, Liposomal Artimisinin 50mg QID x 3 weeks, 4th week off, rotating (discontinued May 2015, restarted 2016 7 days per month), Daily Nystatin, 2 tabs BID, as a preventative measure
SupplementsHello Nikkoal,
I was diagnosed with RA in Dec 2015.Started AIP in Dec and LDN in March.Now I am nearly painfree, fatigue and brainfog gone, still some stiffness in knees but inflammation in other joints gone.Have slowly been able leave NASIDs now only Tumeric,reservitol and selenium for pain.I have been on 4,5mg dose since April but have now become aware that the optimal dose, if you want the full benefit of the rebound effect, is between 1-4mg depending on how fast your liver metabolises the med.The recommended dose seems to be now 3mg.The LDN Trust has a lot of information on this.So now I’m going to try the 3mg and see if any difference.I have also noticed that LDN together with AIP seems to work faster than just LDN alone. Good luck, it’s really worth a try:)
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