Are any of the new members taking LDN?

[LDNRT]

For any of the 174+ conditions where LDN could be of benefit such as, Multiple Sclerosis, Crohn's, Ulcerative Colitis, ME/CFS, Fibromyalgia, Hashimot's, Depression, Pain, Cancer etc

[Debsie72]

I'm going to ask my Neuro when I seen him o June 5th

[Debsie72 in reply to Debsie72]

Oh UI'm in the US and have MS

[lynng22 in reply to Debsie72]

Ask your neuro but he may say no and he carnt prescribe it. If he does go on LDN Trust website I did because my neuro said no, they follow government direction. Private Docs dont the LDN Trust website will put you intouch with a private clinic I did that my neuro is going to get bit of a surprize when I see him in June he told me that for secondary progressive MS their is no relief. I was desperate when I started taking LDN after three months on it today I walked round a shopping village I havnt been able to do that for two years yes I was slow but I did it.

[LDNRT Partner in reply to lynng22]

wow Lynng22 that is just amazing and all in just 3 months! Can't wait until you have been on it 18 months that is how long I kept improving!

[LDNRT Partner]

I have been taking LDN for MS over 10 years, it has been amazing for me. I hope all goes well for you, if you need help in the future finding an LDN prescribing doctor please let me know and I can help you.

[margee]

Yes, I am taking it for Hashi's. Hoping it helps allergies and asthma and, possibly, feeling some progress. My dogs are on it, too!

[LDNRT Partner]

Good Luck and please keep us posted

[TulipRose99]

Hi,

I am taking LDN for fibromyalgia . Started about 4 months ago. Still get flare ups ,not as many and duration could be 3-4 days.

No more fog, I can sleep comfortably. It is unbelievable.

I live USA. It's an amazing change in my life. I never stopped believing. My advice is keep stress level down and spirits up.❤️

[Alikat10 Volunteer in reply to TulipRose99]

I am exactly the same! I take LDN for FM and my flares are fewer between and less extreme. But the sleep? Oh man! To sleep like this is a dream come true!

[TulipRose99 in reply to Alikat10]

So right about the sleep. Now I know where the term"sleeping like a baby" came from. Once I started sleeping the Fibrofog was gone. How lucky we are.

I go on Twitter and spread the word.

LDN gave me back much of my life.

Sleep well.

TulipRose99

[Dutch55]

I have been been on LDN for just over the year. I m so grateful to have taken that first step and took a chance which was the best thing I ever did. I am so happy with Being One the first time users of this amazing life changing medication Caths xx

[TulipRose99]

Hi Dutch55,

I totally agree with you. People are so sceptical .I spread the word as much as I can. It's too big to keep to myself.

So glad you are feeling good❤️

TulipRose99

[TulipRose99]

Hi,

I am very new here, but suffered many years with this invisible illness called Fibromyalgia.

I now am taking LDN and within weeks felt a difference. Now, at about 6 months on. But off for 1 month, I feel like I used to feel . Still have flareups, but less frequent , less pain and only last a few days, vs. months.

I can live with that. (Happily) I spread the word wherever I go.

Everyone, have a great day.

TulipRose99

[LDNRT Partner in reply to TulipRose99]

LDN seems to work well for our members with Fibromyalgia, thank you for your feedback TulipRose99

[ssmith87]

I use it for ms. It has been a god send. I feel like its a sugar pill due to the fact of it helps me so much and i hear great things about it but yet it wont be covered by insurance.

[earthwitch]

I've just asked my GP about it for ankylosing spondylitis. They did know about it, but not convinced there is any evidence that it works, however because I've reached the end of the line with other options (apart from steroids which can't be used longterm) they are going to have a read of the info I printed out for them, and may allow me at least a trial period on it. Heres hoping, as the only alternative is strong opioid pain meds. I've just come off maximum doses of codeine with a nasty withdrawal (had to stop very abruptly because of other health problems) and really don't want to go back on it, even though it did keep my pain levels just about manageable most days. Right now I'm on a short course (2-3 weeks) or steroids to tide me over, but hopefully I can start LDN before the steroid effect wears off again.

[LDNRT Partner in reply to earthwitch]

Good Luck, please keep us posted.

[DocLori]

I'm new to the group and started taking LDN in February this year for recurrent stage IV colon cancer. I also have ME/CFS and thought I might be able to gauge the effectiveness of the LDN by way of the CFS symptoms, since CT/PET scans can't be done very often to measure the cancerous tumor because of the radiation (and cost). Initially, at 3mg, I had an increase in blood pressure so my compound pharmacist convinced me to drop down to .5mg for a couple of weeks, which I did. I then went back to 3mg and after about a month of seeing no improvements in CFS symptoms I increased the LDN to 4.5mg. At that dose the CFS symptoms got worse than they had been in years, but only for a few days, then they subsided. In fact, my blood pressure went back to normal and after years of hypothyroidism I was able to stop taking Armour Thyroid. My thyroid tests came back normal.

When I increased my LDN dose to 4.5mg, after the initial setback with the fatigue, I had a few of the best days I've had in many many years. It was absolutely incredible to feel energy again. That great improvement was short lived, however, so I added DL-Phenylalanine and Alpha Lipioc Acid to the regimen, based on things I had read from Dr. Bihari and others. As an aside I'm also juicing, taking other supplements, taking CBD oil (cannabis), and using essential oils (primarily frankincense). The fatigue is still there so I'm considering splitting LDN doses (4.5 at night and 4.5 in the morning) based on a post I read here. I'll try it and let you know how it goes.

As for the cancer, the metastatic mass in my liver seems to have slowed its growth (it went from 1.5cm in November to 5cm in March but in June it was only at 6cm). The first measure was a CT scan, the second was a PET scan, and the last one was an ultrasound, and my oncologist said that comparing the sizes from the different tests is like apples and oranges, but he seemed very happy with the last measure of 6cm (he had expected more based on the March scan). Numbers from another test, for circulating tumor cells (CTC), also seem to have slowed down since the first reading.

I'm very grateful to have happened upon LDN and to have a doctor who is willing to prescribe it for me (my family doctor). My oncologist, while not prescribing the LDN, is interested in tracking me, and told me he has a few other patients who have "self-prescribed" LDN. He said if this works it could change how he practices oncology. That, to me, is the most exciting part of all. I'm so grateful that this discussion board is out here. We're charting new territory and it's lovely to have a place to come to ask questions.

Last thought: while I started out using compounded LDN, it was expensive ($80 for 30 days), so I did some reading and found out about using the 50mg pills to make my own LDN. I asked my doctor to prescribe the 50mg pills, which he happily did, and now I get 90 pills for $10! (the cost of my insurance copay). I figure that should last us a good year. My husband and I are both taking 4.5ml. I make a liquid batch using one pill and 500ml of water, which I store in the refrigerator in amber bottles. We simply use a syringe that has milliliter measurements on it. Each night, around 10pm, I shake the bottle and pull out 4.5ml with the syringe. We sleep like babies (no insomnia at all). In fact, the LDN seems to have improved our sleep patterns.

So, that's all for now. I'll report back when I have some news.

[aredtigress Administrator in reply to DocLori]

Wow, what a great story DocLori! Wonderful news about the tumor, that's what the research has said will happen, and it's great to have a first hand story. Thank you for sharing!

[ulek]

I started LDN when Chaemotherapy failed to stop progression of my Recto-Sigmoid Carcinoma Omental Secondaries . In the 5 month on LDN which I combine with a Keto Diet I noted the following changes.

1-My level of Pain has improved

2-Abdominal distension has almost Disappeared-

3-I view the world with a measure of equanimity

4-Cancer and inflammation are hand in glove-My CRP marker is falling.

I am a realist-nevertheless its all good 'pro team'.

[Stiffshoulders]

I am going to start my first dose tonight (1mg) for polymyalgia rheumatica. Nervous!

[revliswolf]

Hi, I have been on LDN for about 4 months now. I had read to titrate up very slowly for Hoshimotos. So i started out at .5mg and have very slowly been going up. I am also diagnosed with Fibromyalgia, Lyme Disease, and elevated levels for Lupus. My Rheumatologist prescribed for the Lupus, but Ive read it helps fibro, hoshi, and lyme so i was like ok! Im up to 3.5mg and unfortunately have noticed nothing. My sleep is still horrible, plus insomnia and my pain is still severe. Hands, elbows, back, and heels. I can barely walk at this point my heel pain is so severe. I have noticed however that my thyroid, usually so swollen you can see it bulging out of my throat has gotten much smaller. I do have 3 nodules. Only had 1 last year. That first one doubled in size so we biopsied. Im hoping they will shrink now. I will continue to titrate up to 4.5mg. I am still hopeful it will work. If it doesnt shes going to add hydroxychloroquine. Wich happens to also be used for my other conditions so i am hopeful.