LDN

[kandiepat]

Hi, is anyone reading this, on LDN? Low dose Naltraxone. I know some with Sjogrens and Sarcoidosis are on it but PBC is different and I would like to know if anyone else is on it. Thanks kandiepat

[butterflyEi]

Hi kandiepat

Last year I was prescribed 25mgs of Naltrexone for the PBC itch. Unfortunately it did not suit me but in that first week I tried to research symptoms etc and came across LDN. As I had all the spare tablets and a long wait to see the specialist I decided to try it for myself. I started on the very low dose of 0,5 and slowly worked my way up. The guidance suggested that first signs of improvement would be seen at 6 weeks with full results being seen by 12 weeks. I did this purely off my own back with no help from any medical sources although I am not sure this is a good thing. My finger nails were stronger and I generally felt quite well however it did not resolve my issues with itching. (I stopped taking it about a week before my appointment) Then at long last my specialist appointment came round 2 days ago and I asked him about it but he said I have something better for you. He did not recognise the term LDN but when I said low dose naltrexone he seemed to know about it. There is not a great understanding of this drug in the UK however it seems to work wonders for MS sufferers in the USA and many others. There is a face book page which is quite pro active and I have copied a link for you for their research unit in the UK

ldnresearchtrust.org/

There is a list of doctors who are prepared to prescribe LDN on this web site.

The LDN seems to benefit a great many auto immune disorders.

Are you on it, or are you thinking of taking it?

[kandiepat in reply to butterflyEi]

Thankyou so much Butterfly EI, My son who has sarcoidosis has just started it and my son-in-law who has lung cancer has just started too. with all the research Ive done I didnt come across anyone with PBC until one of the replies to someone else mentioned it. I have Sjogrens and pbc - It will be a year before I see my Liver specialist so I just might do what you did - there is a Doctor here in Dublin who I could see. Maybe there will be some more lovely people who will answer this. Kandiepat

[SunnyXXOO in reply to butterflyEi]

I have been dealing with PBC for quite sometime, it can be a serious a challenge.

I use LDN 3mg and have Alpha Lipoic Acid Infusions 15ml in 500cc bag D5W 3/4X week. Plus I take other supplements from Dr Burt Berkson, Las Cruses, New Mexico. We travel from Massachusetts to see Dr Burt Berkson.

1) LDN is preferred to take before bed

2) 25mgs is too much, will create further damage to Liver. My specialist had me on 50mg, I thought Burt was going to fall off his chair when I told him I was taking 50mgs. LDN is a Compound Pharmacy item (low dose). A lot of people are on 4.5 mgs.

3) I obtained Cannabis license, offset the high with CBD from Sol-CBD (nice website).

4) if you obtain Cannabis license, use 100% Indica flower from dispensary.

Cannabis has 100s of medicinal healing properties. Plus stop Pruritis dead in it tracks.

I will start making my own Cannabis Oil as soon as I confer with Dr Burt Berkson.

I’m in medical field and have tried every medication out there, thought they were going to kill me. Convention Medicine is a temporary bandaid. Please remember that.

GOOD LUCK

SUNNY

[SunnyXXOO in reply to butterflyEi]

I use LDN 3mg’s. My Liver Specailist (Western) put me on 50mgs, I was on 50mgs for a quite some time. Then I found out from 50 was too much, the 50 created further Liver problems. Burt put me on 3 msg, I doing better but still healing.

Sunny XXOO

[slck]

LDN is being used for a very wide range of auto immune conditions. My son, who has PSC, which is similar to PBC, (as well as Ulcerative Colitis), two auto immune conditions, and has returned all his liver function and inflammation values to normal using a combination of LDN, diet (gluten and dairy free) and supplements/vitamins (in a regimen similar to that recommended by Dr. Burton Berkson, who's books address LDN and auto immune conditions). Go to Dudley Delaney's web site on LDN, join the Yahoo LDN User Group, and read Elaine Moore's book on the Promise of Low Dose Naltrexone therapy, and you will obtain good information about LDN, its method of action, uses, and dosing regimens.

My understanding is that PBC can be caused by an auto immune reaction; and if so, then use of LDN (as well as diet and vitamins/supplements) offers a good low cost and low risk strategy for controlling this condition.

Warren

[kandiepat in reply to slck]

Thankyou Warren, I will do some more research - Kandiepat

[Ktltel in reply to slck]

Warren,

I have been on LDN for early stage PBC for 3 weeks. You mention your son took ALA too. Should I be doing ALA too? Many are under the impression just LDN is sufficient. I am trying to keep PBC at bay as I cannot take URSO. PBC is lurking according to my blood work and liver enzyme markers. Should I be talking to my wellness Dr. about ALA in conjunction with LDN?

Stella

[slck in reply to Ktltel]

You should be doing everything necessary to improve your immune system. Alpha lipoic acid, glutathione, n-acetyl cysteine vitamin C and D and other vitamins and supplements will help in that effort. You should also take things that will help to detoxify your liver and contribute to its health, such as milk thistle and selenium. Read Dr. Burton Berkson's book on alpha lipoic acid and you will get a better idea of what a regimen of vitamins, supplements and diet can do to help your immune system. He has a regimen of items you might consider taking.

[Ktltel in reply to slck]

Thank you Warren, I just ordered it off of Amazon.

Stella

[Ktltel in reply to slck]

I'm sorry, I had another question, is ALA taken through IV only? Or is this in supplement form?

[slck in reply to Ktltel]

While Dr. Berkson administers ALA IV for many of his patients, it is impractical to take it that way routinely. He recommends 600 mg/day, and also recommends using European grade ALA (which is more expensive). You will see a discussion of this in his book, when you get it.

[Ktltel in reply to slck]

Thank you Warren.

Stella

[SunnyXXOO in reply to slck]

I have Integrative Physicain up here in Massachusetts, his name is Dr Glenn Rothfeld, Plymouth, Massachusetts, he also has office in Waltham, Massachusetts. He orders what ever Burt wants, he knows I won’t stray from Burt’s Protocol, plus ther’e on the same page.

My ALA is ordered from McGuffs Compound Pharmacy in California, only 50.00 a bottle (5ml which equals 600mg infusion).

[SunnyXXOO in reply to Ktltel]

No, capsule and Caley

[Jlruggie in reply to slck]

I was taking alpha lipoic acid too but my hepatologist asked me to stop taking it. I did and my enzymes are only very slightly elevated now

[SunnyXXOO in reply to Jlruggie]

Too much?

[SunnyXXOO in reply to Ktltel]

Yes, most definitely consult with a Hepatologist, find out numbers and where you stand, keep him on board just in case emergency.

Like I said earlier, my Specailist put me on 50mgs, which unfortunately I didn’t know it was too much, caused further damage. I now take 3mg (compound), perscribed by Burt Berkson MD, a lot of people are on 4mgs or 4.5mgs.

Also you need other supplement, Burt wrote books, I think his protocol is in Honest Medicine. Dr Burt Berkson only uses certain brands, brands without any fillers, he has investigated each manufacture to make they are pure.

He has treated me quite a bit, has the nurses infuse 15ml = 600mgs Monday thru Friday and sometimes twice a day. He also perscribed LDN, and other supplements.

Worth every penny to make trip to Las Cruses, New Mexico. We stay for 14 days every time we go to work with him. He is brilliant, he knows how the cells work where a lot of Western Docs don’t.

If you do get a chance to make appointment, request you see Dr Burt Berkson not his son Dr Author Berkson (shhh Author is kind of a newbie). Author is very good at what he does, but Burt specialises with Autoimmune and lots more.

Hope this help anyone looking for this info.

Sunny

[Ktltel]

Hi Kandipat,

I am on LDN for 3 weeks now. I was diagnosed with PBC 10/10/16. I can't take URSO. It made me sick and my liver enzymes went crazy. I joined this forum back then. I was depressed and scared. I read everything I could on here but eventually it was slck (who has posted a reply to you below) who spoke about LDN and his son. It sparked my interest and after seeing a GI, a naturopath, and a wellness M.D., It was the wellness M. D. who started me on LDN 3 weeks ago. The pharmacy I used was one here where my wellness Dr. practices. You have to be VERY particular where you get the Naltrexone compounded down to the lower dose. I'm praying my pharmacy knows what it's doing in that dept. I showed them the web sight with the stipulations given there. They knew all about it. So, they started me on 1.5mg capsule before bed for 2 weeks. This past Sunday I started on 2 capsules at bedtime for the next 2 weeks. So I'm taking 3 mg at this point. I'm told it takes a bit to find the sweet spot in dosing. But for now, I'm feeling OK. The only thing I notice is I have more energy. BUT.. I'm also on supplements from my naturopath for fatigue too. So, it could be both helping me. I just had blood work done on Tuesday. My numbers were a bit lower. I am also on a strict autoimmune/inflammatory diet. So, I am thoroughly attacking this with all I've got. I mean it.... no cheating for me. Anyway, I also noticed I wake up more during the night which I heard is a side effect. It's not putting a damper on my day so.... there you are.

Right now, my diet, my supplements and LDN are my only defense against PBC. It's taken me since 10/10/16 to read the right information, get into seeing the right doctors and finally get to where I am now. Oh yea, I don't have low grade flushing/fevers anymore either (a definite sign of autoimmune disease) Also, I've been waiting to see a hepatologist for 3 months!! I'm in U. S. Kansas. So getting into K.U. Med is difficult. But next Wednesday is finally my appt. Dec. 1st I had a MRCP, then a ERCP and a biopsy. No damage to my bile ducts as of then, and my biopsy showed only mild fatty liver for now. But PBC is in my blood work. I have positive AMA M2, elavated Alk-phos, but normal billirubin.

So..I guess I'm praying hard that my diet, my supplements and LDN can turn things around and straighten out my overactive immune system. We will see. Time will tell.

Stella ❤

[Melwoods in reply to Ktltel]

What diet are you following

[Ktltel in reply to Melwoods]

Melwoods,

My naturopath had me start at the beginning in finding out what foods I'm allergic to. Or that I had a reaction to. Once I got those results back I "tailored" my diet to eat only the foods that I could have. Ones that didn't trigger my immune system and in turn cause inflammation (Or visa/versa). For me it was A LOT. But, these are foods most everyone should cut out. For me... No dairy at all. No wheat, glutin, corn, or sugar. Honey from bees I was OK to have. It will be different for everyone. There were other things that my report showed I should not eat and so I cut them out too. Basically all the good stuff it seems. Lol. (It truly takes dedication) I'd cheat more if I could take URSO. But I can't so, I can't cheat.

Because of PBC lurking in the wings, I follow the recommendations for the PBC diet. Very low sodium.. which means I try to stay under 2,000-2500 mg a day. So definitely no adding salt to anything. I read labels a lot to keep track. Very low fat for sure. I eat mostly chicken, turkey, or super lean beef. Lots of steamed veggies, especially spinach and kale for me. I drink smoothies for breakfast. Garden of Life plant based protein powder which I mix with organic beet root juice, fresh strawberries, and chia seeds and coconut water. If your looking for a good anti-inflammatory diet, or autoimmune diet just Google that very thing. There are several online to try. Like I mentioned, my diet is tailored to my allergy results AND the PBC diet recommendations too. My naturopath has me on supplements for leaky gut, my liver, my adrenals, and for candida. My wellness Dr. has me on LDN. I know LDN isn't a magic bullet, but at least it helps with autoimmune disease symptoms.

I hope I answered your question. I'm trying hard not to be consumed by this all. I've really established a "new normal" way of eating now. I've been doing this for 4 months. The LDN I just started 3 weeks ago.

Stella

[Melwoods in reply to Ktltel]

Thankyou 😊😊

[kandiepat in reply to Ktltel]

Please keep us all up to date on how you are doing, I do pretty much the same, while not cured we are the best we can be with PBC. Im going to try the LDN as soon as I can. Kandiepat

[Ktltel in reply to kandiepat]

Kandiepat, I will. Especially since I can't take URSO. I think the hepatologist may try to put me back on URSO again, just to try.... I don't know. We will see.

[Jlruggie in reply to Ktltel]

Stella, What foods are and are not normal n your autoimmune/inflammatory diet?

Jlruggie

[Ktltel in reply to Jlruggie]

Hi jlruggie,

My naturopath had me do a allergy test. It was very comprehensive and specific to "me", but, most of the time the main foods causing inflammation are all dairy, gluten, wheat, and sugar.

Makes for uneventful eating but, I do feel better. Fruit and veggies with naturally occurring sugars are OK in moderation. (3 servings a day) I watch the sodium. I try to stay under 2500 mg daily as sodium causes edema. I found even without adding salt to food, many foods already have a lot of sodium in them. I stay away from anything canned. I read labels too. I don't eat simple carbs, and try to eat only 70-80mg of lean protein a day. That's according to the PBCers meals and menu plan.

[Jlruggie in reply to Ktltel]

Great parameters finally ktitel, it's a start to anti inflammatory diet. Moderation truly means zero when it comes to food and pbc. My GI said 4 oz alcohol per week, crucial to have concise parameters. Next desperate search is parameters for fats, how much is too much for pbc population?

Jlruggie

[Ktltel in reply to Jlruggie]

Jlruggie,

Honestly I try not to eat any fats. Granted, your going to get some in meats even eating lean meats. But if I do add any fats, it's in the form of extra virgin olive oil to toss in my salads or brown rice spaghetti. No butter, or margarine either. I just don't.

As far as alcohol goes, I haven't had any since I was diagnosed 10/10/16. Never was a big party animal. Just an occasional drinker. Only fruity sweet drinks once in awhile with dinner when we went out. But not anymore. So I don't miss it at all. Just trying to make everything easy breezy for my liver.

[Melwoods]

I was put on 25 mg for irretractable itch and then upped to 50mg but sadly not worked

[Ktltel in reply to Melwoods]

Melwoods,

Those doses of Naltexone are very bad for your liver. Low dose naltrexone is given at it's highest at 4.5. That's what I currently take 4.5mg. once at bedtime.

Stella

[Wilmahair]

My Sister is but hers is for rheumatoid Arthritis. I really wanted to try it too as we both see the same Dr. But my problem is i cannot get my pain undercontrol and LDN discounts any pain relief i use at present. As i am allergic to many pain meds i dont have much choice any more.

So please keep me informed of any info you find out. Thanks.

[Ktltel in reply to Wilmahair]

Wilmahair,

That's exactly correct. Low dose naltrexone cannot be taken if you are currently on prescription pain killers. Talk to your doctor about it. That way you can give LDN a try. So many are in your situation. In a lot of pain and taking pain meds. It's very scary to be weaned off of the medication(s) that keep your pain at bay. Its a decision only you can make. Ldn doesn't have an immediate effect either. It can take a bit to find the sweet spot dose that works for you. But, it has very little side effects at that 4.5mg dose. Most pain killers come with a list of dangerous side effects. It's something you'll have to weigh out. I'm sorry your going through this. I know it's very difficult and painful. You're in my thoughts and prayers.

Stella

[Wilmahair in reply to Ktltel]

Thank you Stella. I have been weening off my pain meds but my Dr wanted me to go up again. I have resisted and tomorrow i speak to her again and will try to come off them completely and then discuss the benifits of LDN for me. Keeping fingers crossed i have a good result. Thanks again.