Has LDN worked well & so quickly for anyone else????

[2011Rio]

Hi,

I’m just wondering if anyone has had their doctor refuse strongly to prescribing LDN. If so, how did you go about getting a perscription for it? Also, I only went to one website about LDN. Do most of you feel confident about its side effects being minimul and not causing permanent damage?

Thank you, any info is very helpful. I have been having a very rough time getting my symptoms down to even bearable.

Tricia

Diagnosed w/RA 2011
Diagnosed w/Lyme, Ehrlichia, babesia, bartonella, ebv Feb 2016
metronidazole 500mg 1tab,3x a day M-F:
doxicycline 100mg 1tab 2x a day; Alliultra 360mg 2x a day;
Larrea; burbur; GSF 400mg 1tab 2x a day ; multi vit; b12 lozenge;
vit c 2000mg daily; Actemra 10/2015-present (may come off since
lyme diagnoses) Plaquenil 200mg 2x a day; Prednisone 4.5mg
(weaning off); Baclofen 10mg bedtime; Bentyl 10mg as needed;
fexodinadine 180mg daily; armour thyroid 45mg daily; omeprazole 40mg d

[PhilC]

Hi Tricia,

LDN is not risk-free. While researching it, I came across several reports of people with RA (and one with PsA) who got much worse after starting on LDN. Since you have RA, I would approach LDN with caution. It might be worth trying, but the last thing you need is something that could make you feel even worse. If you decide to try LDN, it would be prudent to start at a low dose and increase it slowly (e.g., increase the dose by 0.5 mg per month). For most people, 1.5 mg is the lowest dose; hypersensitive people may need to start at 0.5 mg. You would need to discuss this with the prescribing physician since many don’t know any better and will automatically write the prescription for 4.5 mg.

NOTE: I am not a medical doctor; I am just passing along some information I obtained via personal research.

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[gratefulgirl]

Hi Michelle & Tricia, Phil gives good advice. Start at a dose that works for you & gradually build up to the recommended dose. I did not know to do this & started right out the box at 4.5 mg. Well, it was a great thing for me. But I know we are all different. My Rheumy was intrigued by what he read about it & was more than happy to prescribe it for me. He still remains skeptical about AP, but I did not let him influence my decision to continue with AP.

Anyway, for now, I continue to take LDN & will probably do so for a long time. 😀

I wish you both the best in your roadback journey to good health! GG

[2011Rio]

Thank you, Phil & gratefulgirl,

I take every bit of advice seriously and find it helpful to make my own decisions.
I hope you continue to move forward and see great results.

Diagnosed w/RA 2011
Diagnosed w/Lyme, Ehrlichia, babesia, bartonella, ebv Feb 2016
metronidazole 500mg 1tab,3x a day M-F:
doxicycline 100mg 1tab 2x a day; Alliultra 360mg 2x a day;
Larrea; burbur; GSF 400mg 1tab 2x a day ; multi vit; b12 lozenge;
vit c 2000mg daily; Actemra 10/2015-present (may come off since
lyme diagnoses) Plaquenil 200mg 2x a day; Prednisone 4.5mg
(weaning off); Baclofen 10mg bedtime; Bentyl 10mg as needed;
fexodinadine 180mg daily; armour thyroid 45mg daily; omeprazole 40mg d

[cookie]

I tried LDN starting with a low dosage working up to a max of 4.5. I did not receive any benefits from LDN whatsoever.

Cookie

Diagnosed with RA in 2005. Taking minocycline M W F. Taking B vitamins, fish oil, probiotics, vit E, calcium, vit D, DHEA, zinc, magnesium taurine, curcumin, msm, GLA, vitamin C, glutathione capsules. Using topical ointments for pain such as Voltaren. Drinking lactose free milk, eating lean meat such as chicken and fruits and veggies. Exercising 3 times a week.
My side effects of mino are hyperpigmentation of my face/neck and darkening of my gums and whites of eyes which is very distressing. Diagno

[gratefulgirl]

I continue to be one of those who do receive the benefits of LDN. While on vacay I forgot to take it two nights in a row (was on a flight from CT to CA) & just plain forgot once I got to Hollywood. By day two I felt not as good as usual. So I won’t be doing that again!

[vera]

Ditto Grateful Girl, I forgot to take one night so decided to experiment and not take for two more nights after that. I got really sick. As one who is on Enbrel which lowers the immune system, I know LDN helps. Can’t say I noticed the pain was less after missing 3 nights. But, I know it is definitely a key player in my neck/back pain, as well as helping me stay well.

Actually, my experience isn’t unusual. Watched the clip of Skip (from Skip’s Pharmacy) during an LDN seminar. He takes it as a prophylactic, and was dog sick during the seminar. Said he forgot to bring it along with him! 🙄

[gratefulgirl]

Vera, thanks for sharing yours & Skip’s experience. I’m about to take my dose — a little late, but not one to be missed! Be well dear 🙂 GG

[cavalier]

i’m still on LDN 4.5 mg’s. I did a experiment to see how i would do going off after being on this for 6 months. I had read that some people get some pain sometimes & I was in a bad state of pain so I felt I had better be sure – i went off for 3 wk’s with no change in pain (come to find out was Candida related or part of it is) I am now back on LDN been 2 wks’ now – after getting a good jog in reading Dr K. a LLMD who states that LDN is great for lowering cytokines which is a real issue for me as well as the immune modulation affects.

Jill SD, Lyme CPn & Candida

[gratefulgirl]

Hi Jill, your note reminds me what great detectives we have to be in managing our health. Glad you were able to figure out the root cause of the pain! LDN will remain a staple in my life 🙂 To your health! GG

[cavalier]

Indeed GG! We have to see & measure responses it is very telling the body – it is really a gift to help us to know.

Best – Jill

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