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[user=67]Todd WI[/user] wrote:
I tried LDN for several months last year. I really didn't notice much except for some very vivid dreams.
A couple of months ago I decided to give it another go. At the time I had been on AP for over a year and was doing pretty well, but I was (and still am) searching for perfection, so I added LDN back into the mix. I took LDN for about a week and it was like I had been hit by the proverbial truck. I didn't take one or two steps back, I took them all back and then some. It was the first time while on AP that I had to use my crutches. It was the worst flare (herx?) both in terms of severity and length that I've experienced since starting AP. I stopped the LDN and the flare started subsiding. I'm back to doing well again, but still not perfect.
The obvious question is: was it a herx? It could have been, but personally, I don't think it was. I say that based on the severity and the length of the flare and the fact that after it I didn't return to a better condition than before the flare. So for me, LDN is definitely off the table.
Todd
I glad you posted this, because it gives me pause for concern. As you can see from my post above, LDN does seem to be helping me. In my case I continued Minocycline for three month after starting LDN. I have been off Minocycline for 3 weeks now with no change in pain parameters. I don't believe LDN is a stand alone treatment if the Mycoplama is very active. My current line of thinking is to keep the Mycoplasma weak and try to get the immune system to fight it also with LDN.
vinny
Psoriatic Arthritis: 100mg Minoz Minocycline TABLET daily; twice daily 400mg Pentoxifylline;125mcg Levotyroxine: Have been using some level of Minocycline since 2008
Hi Vinny,
I'm glad to hear that LDN is helping you. I wanted it to help me, but it didn't work our that way.
Please keep us updated on your experience with LDN.
Todd
Hi everyone, I am newly diagnosed. I am a massage therapist and work with a lot of people with pain/connective tissue/autoimmune disorders. I've seen how “conventional methods” such as methotrexate, steroids, etc have impacted my clients and I want to avoid them if at all possible. After being diagnosed, my first stop was an AP doctor. I was SO thankful for all the people on the sclero boards who pointed me in this direciton. When I went to visit the AP doc, he suggested LDN. He wanted to try that first for 30 day, then if I wasn't in complete remission he said he'd add AP. In the background, I had been emailing with an AP expert in Iowa. He suggested that I do both LDN and AP at the same time. I spoke with my AP doc and he agreed that it would be fine to do both immediately. I've been on 4.5 LDN for 4 nights and I start 50mgs of Minocin tomorrow. I'm nervous, but hopeful. Thanks for all the info you've posted here. It gives me a lot to think about. My biggest concern is that I have 2 young kids, and I run a massage business. I touch people all the time and I need energy. Have you found that you are more immunosuppressed since taking these meds? Of course I want my diffuse scleroderma to go into remission, but I also want to be well enough to continue with my work/kids/etc. Are you able to balance all of this while on these drugs? I'm also on an anti-inflammatory diet and herbs perscribed by my AP doc. I already feel 90% better from the diet changes alone. I guess I just don't know what to expect when I'm on these meds. Will my immune system be weakened? Will touching so many people put me at increased risk of illness? Will the meds give me more or less energy? Thank you for sharing your experience.
You are indeed fortunate to be starting out on the right foot with this diagnosis. So many of us went through years of immunosuppresive meds before finding AP and (for some) LDN. I'm on both. I started with LDN and then went to AP a few months later. To clarify, neither of these drugs will suppress your immune system. They will modulate it and enhance it. You are fighting an infection. This will help you do it. I have also noticed that while on LDN I almost never get sick with whatever is going around anymore.
LDN gave me more energy, but I did have sleep issues for the first month or so. I had to reduce my dosage down to 1.5 and taper up. I never did reach 4.5 successfully, as it gave me some dizziness and palpitations at that level. I take 3.5 mg and that's the perfect dose for me. It took some playing around to figure that out.
You're extremely lucky to have landed with such a well-informed doctor right off the bat. It sounds like you're in very good hands.
Judy
[user=67]Todd WI[/user] wrote:
I tried LDN for several months last year. I really didn't notice much except for some very vivid dreams.
A couple of months ago I decided to give it another go. At the time I had been on AP for over a year and was doing pretty well, but I was (and still am) searching for perfection, so I added LDN back into the mix. I took LDN for about a week and it was like I had been hit by the proverbial truck. I didn't take one or two steps back, I took them all back and then some. It was the first time while on AP that I had to use my crutches. It was the worst flare (herx?) both in terms of severity and length that I've experienced since starting AP. I stopped the LDN and the flare started subsiding. I'm back to doing well again, but still not perfect.
The obvious question is: was it a herx? It could have been, but personally, I don't think it was. I say that based on the severity and the length of the flare and the fact that after it I didn't return to a better condition than before the flare. So for me, LDN is definitely off the table.
Todd
Todd,
I can totally understand why you would not want to try LDN again after that experience! My personal opinion is that it was a herx, and that perhaps you took on too much at once. I had to start AP very slowly and only figured that out the hard way. I was already on LDN and when I went on full dose AP (Mino 100mg x twice daily) it knocked me flat. My doc had me stop the AP and just do LDN for a while, along with hyperbaric oxygen treatments. Then, when I went back on AP, I started at 25mg of mino 3x a week. I've built up slowly for the past year to 200 mg 3x a week, and I get herxes every time I increase the dosage. They're not nearly as bad as they used to be, though, so I'm hopeful that my bacterial load is being reduced over time.
I guess what I'm trying to say is that it may be possible to work with these drugs together if you take things very slowly – but if AP alone is doing the trick for you, why mess with success?
Thank you! I am so grateful to everyone for sharing their successes. I am curious – how will I know a herx from a drug allergy? In the past I've had small reacations to tetracycline based drugs. Minocin is in that family of drugs so I am concerned. What does a herx feel like and how can I diferentiate?
[user=1617]kimowens[/user] wrote:
Thank you! I am so grateful to everyone for sharing their successes. I am curious – how will I know a herx from a drug allergy? In the past I've had small reacations to tetracycline based drugs. Minocin is in that family of drugs so I am concerned. What does a herx feel like and how can I diferentiate?
Hi and welcome.
You will find lots of useful information in the “Home” section of the board that will explain herxing.
Take care…..kim
Using the Search Function on the Board
http://www.rbfbb.org/view_topic.php?id=2975&forum_id=1[/color]Be well! Lynnie
Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)I continue to treat my psoriatic arthritis with LDN and Minocycline. I continue to improve, recently regaining much of my energy and mental optimism. I don't consider LDN a stand alone treatment, but it has allowed me to reduce my Minocycline dosage from the 100mg twice daily to 100mg M,W,F, which I was unable to do before LDN. I no longer need the Diclofenac, but do take an Advil daily. I use 4.5 mg of LDN at 9pm nightly and never miss.
vinny
Psoriatic Arthritis: 100mg Minoz Minocycline TABLET daily; twice daily 400mg Pentoxifylline;125mcg Levotyroxine: Have been using some level of Minocycline since 2008
Hello Jaydee,
I'm currently researching LDN as one of the doctors my daughter sees for her Mixed Connective Tissue Disease prescribes it. My daughter is not at present on this treatment but it looked promising enough to investigate.
I picked up a book from Amazon.com called “The Promise of Low Dose Naltrexone Therapy” by Elaine A. Moore and Samantha Wilkinson. I'm enjoying reading it and find the material very approachable from a layman's standpoint.
Best of luck to you.
-JM
Hi Kim,
Sounds like you are on the right track with your diet, herbs and now AP. I tested positive for SD in Sept. 08 and started on AP shortly afterwards. Like yourself, I have 3 young kids that I am still able to look after full time and bring them to their neverending list of activities and sports etc. I don't find that AP has decreased my energy levels at all. Others have reported that they have noticed they have more energy since starting AP. Good luck! You are headed in the right direction!
I had Dr.K prescripe LDN for me today, I will start next week. Will let you know how it is going
Eva:D
Eva Holloway
jfr,
how do I lower the LDN from 4.5 mg to 2 or less? My doctor ordered 4.5 mg and I took it to a compounding pharmacy and they will only do what the doctor ordered. Can I divide it more and put maybe half of it in another gel cap? Someone said they put in in liquid then take it. I don't want to start out on a high amount, I am very sensitive to meds and always have to start low.:?
Eva
Eva Holloway
Yeah! I'm so excited that you are trying LDN and AP! I've been on 4.5 LDN for 3 weeks now and AP for 10 days. I have not had any trouble with LDN at all. I thought I may, because I am sensitive and I was really worried about anxiety and insomnia, but I have been sleeping like a baby! I wish you the best with this new treatment! Blessings, Kim
I started LDN on March 17, 2009. I read the posts here and it seemed worth a try. On March 28, 11 days into LDN, I had a bad flare that required steroids. I continued taking LDN. Then May 1st I had another bad flare, and needed steroids again!!
I've been on Minocin since June 2007. I felt pretty good throughout 2008, steady improvements. There are no notes in my diary about steroids or flares in 2008–I think I did not need steroids in 2008. Early 2009 I thought my progress had slowed, or stopped, so I decided to try LDN. I can't say for certain that the LDN caused the flares, but having 2 bad ones in such a short period of time seemed very unusual, so I stopped the LDN on May 1st. I haven't mustered up the courage to try it again. I'm thinking LDN is not good for me, or my RA & Lupus.
Lupus/Rheumatoid Arthritis overlap, tachycardia, hypo-thyroid, high lead and other metals. Valacyclovir (anti-viral), Nystatin (anti-fungal), Vitamin A, Zinc, iron. Formerly: Minocycline June 2007 to March 2017; Doxy; 3 weeks IV Clindamycin; 9 years plaquenil (useless); 1 year Methotrexate (useless). Quality supplements, no processed food, no grain, all organic.
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