Guest guest Posted March 28, 2010 Report Share Posted March 28, 2010 Fiona I have a similar diagnosis plus CFIDS. I've been on LDN for over three years, much to my benefit. I take less Armour thyroid now. mjh ================ Posted by: "Fiona" f.hodgkiss@... f.hodgkiss Sun Mar 28, 2010 9:21 am (PDT) I was wondering what most people are ill with? What's the biggest patient group/diagnosis that's using LDN?The thing is I have ME/CFS and was told I had "atypical fibromyalgia". I don't really buy the latter as a diagnosis, it was more of a bull**** fob-off and I know a lot of the pain has related to being hypothyroid, being a poor thyroid hormone converter. In addition to my thyroid problems, I have low adrenal reserve. I also have asthma.I get the impression that people are taking LDN for various reasons actually but there seems to be a lot of MS talk and that MS people are hoping to halt their MS progression with it.There is so much to learn.Fiona Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2010 Report Share Posted March 28, 2010 I started LDN last month hoping it would help my RA. So far not so good. I'm hoping that it will take a little time to kick in. now you're saying that pain is associated with hypothyroidism which I also have. Please tell me more about this. You're right that there is so much to learn. I'm just thankful that I happened upon this group recently. Any advice is welcomed from anyone. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2010 Report Share Posted March 29, 2010 Hope for Rheumatoid Arthritis: Low Dose Naltrexone http://www.webspawner.com/users/ldnforra/index.html This group is especially for people with rheumatoid arthritis (RA) rheumatoidarthritis-low dose naltrexone/ > > I started LDN last month hoping it would help my RA. So far not so good. > I'm hoping that it will take a little time to kick in. now you're saying that > pain is associated with hypothyroidism which I also have. Please tell me > more about this. You're right that there is so much to learn. I'm just > thankful that I happened upon this group recently. Any advice is welcomed from > anyone. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2010 Report Share Posted March 29, 2010 I deal with milder FM and OA (pretty narley) now at almost 72. LDN has been a tough one for me since I started in Oct. and now I'm only taking .5mg every 2nd or 3rd day. For me, I just got more joint pains as the dose went higher...this is ME. Thyroid is critical and so many are Hypo and not being treated properly or being dismissed as normal....I was so called normal for 10 long years.....Armour has been my salvation and now FINALLY I'm up to 3 grains. I also deal with Hashi and take 400 mcg of Selenium daily and this mineral has "knocked" down my Hashi numbers big time. A great board for thyroid help is: realthyroidhelp.com These people are so helpful and know so much....no doc can touch their experiences. I just started on a new OIL, Black Current Seed Oil and only WISH I had been on it years ago. I took a bottle back in May 09 since I muscle tested strong for it with my chiro, but didn't stay with it. I'm kicking myself. Anyway, I take swansons BCSO 6-8 softgels per day and in only 4 days I'm feeling less inflammation and joint pains. Read up on BCSO as it's recommended for all forms of arthritis. From WorldHealth.net This thorn less shrub belongs to the red currant family. The leaves and berries are used medicinally. In European folk medicine, black currant once had a considerable reputation for controlling diarrhea, promoting urine output (as a diuretic) and reducing arthritic and rheumatic pains. Black currant oil is a source of gamma-linoleic acid (GLA) to treat a wide range of ailments. I also take Grapeseed Extract for going on15 yrs now and I KNOW my health is strong due to this powerful antioxidant. Pycnogenol is just as great but a little more pricey. I took it for a year in 1995 and then switched to GE. This is a lot of what is working for my achy aging body. [low dose naltrexone] Re:What are most people ill here with? I started LDN last month hoping it would help my RA. So far not so good. I'm hoping that it will take a little time to kick in. now you're saying that pain is associated with hypothyroidism which I also have. Please tell me more about this. You're right that there is so much to learn. I'm just thankful that I happened upon this group recently. Any advice is welcomed from anyone. No virus found in this incoming message.Checked by AVG - www.avg.com Version: 9.0.791 / Virus Database: 271.1.1/2775 - Release Date: 03/27/10 23:32:00 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2010 Report Share Posted April 1, 2010 I have all of this plus CFS, leaky gut, IBS, either total or near-total adrenal failure after so many years of all this, and hypothyroid. I've been on LDN for a few months and am seeing results in a couple of small auto-immune problems (like dry eyes), a definite boost to my immune system (started within a few days, I quit being ill with a virus at least several days a week -- I can feel the LDN fight them off in 1/2 hour to a day), and I have been able to cut my pain pills back. Much to go, but definite progress and all this before I theoretically reach a therapeutic dose. I think there are quite a few of us here that are not MS, too. The thing is I have ME/CFS and was told I had " atypical fibromyalgia " The thing is I have ME/CFS and was told I had " atypical fibromyalgia " <WBR>. I don't really buy the latter as a diagnosis, it was more of a bull**** fob-off and I know a lot of the pain has related to being hypothyroid, being a poor thyroid hormone converter. In additi I get the impression that people are taking LDN for various reasons actually but there seems to be a lot of MS talk and that MS people are hoping to halt their MS progression with it. There is so much to learn. Fiona Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2010 Report Share Posted April 1, 2010 Bacterial infections like those associated with Lyme disease cause problems such as MS, ALS, RA, fibromyalgia, and more conditions that have names, but no official causes. I took LDN for one year for my MS. From LDN I moved to the German drug calcium ethyl amino phosphate (EAP), and have now been diagnosed with and started treatment for Lyme disease. I am most grateful to LDN and the LDN message board as my escape from the world of CRAB and disease modifying drugs (DMDs). Currently I spend some time on the MS Patients Like Me board. There are many threads on LDN there. When people ask about LDN, I send them along to this message board. Lately, I've been considering restarting my LDN to maybe supplement my Lyme disease therapy. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2010 Report Share Posted April 1, 2010 LDN is mostly used to treat autoimmune diseases. These include MS, Lupus, RA and HIV, etc. However it also helps those with some cancers, children with autism and those that have Irritable Bowel, CFS/ME and Fibromyalgia. This group is for everyone that is taking or thinking about taking LDN, however, there are many sub-groups for people that have these other diseases. You can do a search if you want to join more than just this group. There is even a group for pets and several in languages other than English. Some of the groups are more active than others. You are welcome to join my group, LDNforFibro. The link is below my name. Judy HTo better health through knowledgeStarted taking LDN (Low Dose Naltrexone) on 1/21/2009 for Fibromyalgia, Hypothyroid, PCOS and Restless LegsLDNforFibro/ Posted by: "Fiona" f.hodgkiss@... f.hodgkiss Sun Mar 28, 2010 9:21 am (PDT) I was wondering what most people are ill with? What's the biggest patient group/diagnosis that's using LDN?The thing is I have ME/CFS and was told I had "atypical fibromyalgia". I don't really buy the latter as a diagnosis, it was more of a bull**** fob-off and I know a lot of the pain has related to being hypothyroid, being a poor thyroid hormone converter. In addition to my thyroid problems, I have low adrenal reserve. I also have asthma.I get the impression that people are taking LDN for various reasons actually but there seems to be a lot of MS talk and that MS people are hoping to halt their MS progression with it.There is so much to learn.Fiona Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2010 Report Share Posted April 1, 2010 On Thu, 01 Apr 2010 14:53:38 -0300, Judy Harford <jlharford@...> wrote: > LDN is mostly used to treat autoimmune diseases. These include MS, > Lupus, RA and HIV, etc. However it also helps those with some cancers, > children with autism and those that have Irritable Bowel, CFS/ME and > Fibromyalgia. This group is for everyone that is taking or thinking > about taking LDN, however, there are many sub-groups for people that > have these other diseases. You can do a search if you want to join > more than just this group. There is even a group for pets and several in > languages other than English. Some of the groups are more active than > others. You are welcome to join my group, LDNforFibro. The link is below > my name. > > Judy H > I take LDN for Crohn's disease. But it has also remarkably helped my asthma and joint pain. My husband takes it for post-polio syndrome. It is helping both of us a great deal. (For him, it has arrested the progression of his symptoms.) And we're just going to be starting two of our cats on it, at the appropriate cat dose recommended by Skip of Skip's Pharmacy: one has pancreatitis (related to inflammatory bowel disease) and one, we just found out, has serious cancer (osteosarcoma). I'm not expecting it to cure her, but it may well help, and possibly help a lot. Other treatment is not an option -- except an herbal preparation which will help make her comfortable; she's eating less but is not in obvious pain right now and so far the cancer has not spread beyond her very large tumor. We'll see what LDN does (if anything). n ______________________________ A funny, touching gift book for cat lovers. Signed copies, free shipping (U.S., reduced elsewhere): Confessions of a Cataholic: My Life With the 10 Cats Who Caused My Addiction by n Van Til www.wordpowerpublishing.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2010 Report Share Posted April 1, 2010 I have systemic lupus erythematosus, raynaud's phenomenon, interstitial cystitis, IBD (colitis), and severe allergies. It has helped tremendously with all of them and I am the only one in my chronic illness support group that is doing well and can work. I am convinced I would be on unemployment without it, even with all of the other things I have changed to help my health. I no longer have interstitial cystitis symptoms, Raynaud's has tremendously improved, my allergies are manageable, and the lupus symptoms are mild enough that I have to miss work much less than I used to and I can work really long hours (unfortunately, the job is a little stressful right now and I'm puttig in well over my 40 hours) without feeling like I have the flu or getting fevers anymore. I'm raw vegan, try to exercise, and work very hard at being healthy, but LDN is my life saver. Cami SLE LDN 2 years http://healingfromlupus.blogspot.com Quote Link to comment Share on other sites More sharing options...
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