My son was recently diagnosed with PSC (Primary Sclerosing Colangitis) and using diet and supplements to control it. Any members with PSC?

[slck]

Would like to share experiences on treatment and results.

[overworked1]

Hi "sick" my son has also recently been diagnosed with PSC but isn't taking anything for it, he also has ulcerative colitis which he is medicated for. Does your son have signs and symptoms? My lad didn't know he had anything wrong with his liver, it was an incidental finding when his LFTs weren't normal.

[slck in reply to overworked1]

My son also has UC, since age 13, and it has been mostly under control since that time using MP6 and asecol, however he went off these when diagnosed with PSC. He is 24 now and was diagnosed with PSC about a year ago when his LFT's were very high. Initially he had some itching, but it went away when he stopped drinking any alcohol, and then changed his diet to gluten and dairy free, and low fat. He is taking a range of supplements, particularly milk thistle, alpha-lipoid acid, N-acetyl cysteine, and others to boost his immune system. He has not yet started low dose naltrexone (LDN), but expect he will in the near future. If you haven't read up on LDN, I suggest you do, since it is being used, off label, for many types of auto immune diseases, and I am hopeful that it will further slow, if not halt the PSC progression. (There is an LDN web site and a Yahoo User Group for LDN, that can provide lots of information.) You may also want to read up on Dr Burton Berkson who has combined LDN with lipoic acid and other supplements to treat auto immune conditions. Berkson has books on LDN and ALA that are good, and you can get his suggested regimen of these and other supplement ingredients from them that seem to benefit a wide range of auto-immune conditions.

My son's LFT's have come down a lot, but are still high. He did have one very positive result so far, a year after diagnosis, his follow-up MRCP showed that one large stricture had disappeared.

I would appreciate any information you come across that might be helpful, and wish you and your son well.

SLCK

[angelo212]

Auto-immune disorders are usually your immune system going crazy. Increasing your immune system is the last thing you want to do. The meds they give usually slow down your immune system (prednisone). Any supplement that has a affect on the immune system is the last thing you want to take when you have a auto-immune disorder. I have one and I was taking ALA-NAC-milk thistle way before I even had one and still got it. All my Rumatologist and Gastro Doctors told me stop all supplements and I researched it and learned a whole lot. I know no one here is going to listen but Dr Berksons VERY OLD idea about ALA-Selenium- extremely high dose Vit C is even frowned upon by him these days. Now about LDN. Be careful where you get your info from. Just because a Doctor says it (like Dr. Mercola) doesn't mean it's true. He doesn't even see patience anymore. He is making more money talking BS and selling supplements on his bogus website. Also getting sued by about 10 different people all the time because of his claims.

A search of PubMed for “low-dose naltrexone” reveals only pilot and preliminary studies. The quick bottom line is that there does not appear to be a single medical application of LDN (outside of addiction) that is supported by a class I clinical trial, let alone a consensus of rigorous studies. What we do see is a smattering of pilot studies for a few diseases. There are also a few studies looking at Crohn’s disease with some positive effects. At the very least, LDN looks less promising for autism than for either painful or autoimmune diseases, which does make sense given that autism is a very different and complex disorder. This is where the pseudoscience comes in – some advocates are promoting LDN as a breakthrough medical treatment for a long list of diseases and disorder, going well beyond the research. The website, lowdosenaltrexone.org, embellishes the preliminary research and presents LDN as an effective treatment. They list that it is effective for 45 disorders most of which are very bad disorders. Right there we have a huge red flag – a treatment that works for a long list of diseases with different etiologies. Many of the diseases on the list are auto-immune, and therefore an immunosuppresant could theoretically be applied to many auto-immune diseases. But many of the diseases on the list are not auto-immune.Increasing immune activity actually worsens auto-immune diseases, and suppressing the immune system would worsen PSC. This is a difficult contradiction to resolve. The end result is just another bogus treatment with claims that are literally too good to be true, based upon pre-clinical or preliminary evidence only. I could go on and on. Save your money time and sanity by just staying away from everything for now.

I'll leave you with this. I was a supplement junkie. I would research a supplement see 10 HUMAN studies that said the supplement was great for my disorder. Because I wanted to get better my brain would justify taking the supplement over the fact that I would forget about the 3,000 STUDIES THAT SHOWED THE SUPPLEMENT JUST DIDN"T DO A DAMN THING. So 10 good over 3,000 bad and I still took it. The supplement companies would use those same 10 studies over and over in there ads even though those 10 great studies were from the 70's. Nobody reads when the studies took place or try to see if there are more then the ones there listing. They just say "it has to work look at the study".

[slck in reply to angelo212]

If you could supply any links or citations that discuss Dr. Berkson changing his outlook on his prior recommendations for supplements and LDN, I would appreciate it.

Thanks,

SLCK

[slck in reply to angelo212]

I was going back and looking at my posts and replies and re-read your past reply to my initial post about PSC and Low Dose Naltrexone. Your scepticism about LDN is not well founded, because you think that LDN "makes your immune system go crazy". Nothing could be further from the truth; it brings it back to normal. My son has been successful in his use of LDN, diet and vitamins/supplements to treat his PSC. All his liver function values have returned to normal, and his inflammation markers also have returned to normal. He has no symptoms and in essence he is completely normal. I would urge you to read Linda Elsgood's recent book, The LDN Book, which was published in conjunction with the 2016 annual LDN conference. It contains chapters on the drug's mechanism of action, as well as application to various auto-immune conditions and cancer.

[labguy]

My son has PSC & UC... diagnosed 4 yrs ago..... google vancomycin and Dr Yinka Davies........ vanc is out of the box thinking ...... ongoing research but just know that it has an amazing immunomodulatory effect against PSC. Conventional therapy for this group of kids leads to scarring, fibrosis, and cirrhosis ........ VSL#3 probiotic, R Lipoic acid from Geronova Research, and CuraMed curcumin ........ I'm a clinical biochem person (lucky for my son). Check into all of these asap !

[Titusmom in reply to labguy]

I know this an old post but I hope to get in touch with you. You just gave me hope. Not sure if my daughter s diagnoses yet but she has UC and now her liver enzymes are elevated. She was on LDN for many years and now stopped using it. I will resume using it. What r lip pic cid do for the liver?

[slck in reply to Titusmom]

You can reach me at [e-mail]

R Lipoic Acid is a form of alpha lipoic acid. Alpha lipoic acid is a supplement that is typically used in conjunction with LDN, or as a regular part of a vitamin/supplement regimen, to better regulate and improve the body's immune system. If you have not already read Dr. Burton Berkson's books on alpha lipoic acid and B-vitamins, you should do so, and it will help to explain the mechanism of action, and why it is important to take this (as well as a regimen of other vitamins and supplements which he discusses in his books). He also discusses diet, which is very important. UC is an auto immune condition, and whatever liver condition may be diagnosed, may also be an auto immune disease, so that following an LDN, diet and vitamin/supplement protocol, as outlined in Dr. Berkson's books, should be tailored to eliminating the cause of the auto immunity (likely gluten and dairy) so that the intestinal tract does not get inflamed and "leak" proteins and other substances into the body that ordinarily would not permeate the intestinal wall. Those "foreign items"that leak from the gut are typically the root cause of the auto immune reaction, and so eliminating them is the first step in the treatment strategy. Vitamins and supplements as well as LDN then can work to re-regulate your immune system cells to let your body's immune system take care of healing.

Hope this basic summary helps, but do a lot of reading and research on your own: Dr. Burton Berkson's books and on-line interviews and presentations; materials from the LDN Research Trust; and Dudley Delaney's web site also provides a wealth of information about LDN, and links to other resources that will provide useful information. Feel free to contact me at the above e-mail address.

Warren

[slck]

My son also has PSC and UC. He is 27 now; was diagnosed with UC at age 13, and diagnosed with PSC at age 24. After PSC diagnosis he was taken off his UC meds of asecol and 6MP by his hepatologist, went gluten and dairy free, and started a regimen of vitamins and supplements similar to that prescribed by Dr. Burton Berkson, Las Cruces NM, who has written several books including those on Low Dose Naltrexone (LDN), Alpha Lipoic Acid, B Vitamins, etc. and has had good success in treating a wide range of auto immune conditions with LDN, vitamins/supplements, and diet. (Google Burton Berkson and listen to his videos, especially 2009 at a NIH conference, and others on his recommended regimens.) The vitamin/supplement regimen is intended to detoxify (milk thistle, selenium, etc) , and reduce inflammation and improve the immune system (alpha lipoic acid, n-acetylcysteine, glutathione, B vitamins, Zyflamend, etc), My sons liver function values decreased notably, but after a year on only the diet and supplements, were still outside the normal range. His second liver scan, a year after diagnosis did show no further scarring, and one stricture did disappear, however.

After much resistance to drugs, and a severe UC flare (first since age 13, because his doctor stopped his asecol and 6MP medication when diagnosd with PSC), he added LDN to his regimen. Within 2 months all his liver function values were normal, and within a few more months, all his inflammation markers were normal. He has continued with being dairy free (he cheats on the gluten), takes his vitamins/supplements, and LDN, and has been perfectly normal ever since. He has also subsequently resumed asecol and 6 MP, and his hepatologist has also put him on URSO, however I ascribe his good condition to the LDN, and would suggest you look into it as well for your son. You will probably see a lot of scepticism from main stream medicine about LDN, but if you Google the LDN Research Trust, follow some of its links to Dudley Delaney's web site about LDN, and join the Yahoo LDN Users Group, you will probably read about a lot of success stories and few downsides to this innexpensive and low risk drug. Unfortunately if prescribed, it is "off label" and hence the reluctance of some doctors to prescribe it.

I would be interested in hearing more from you about the regimen that your son is on, links to internet resources that might provide more information, and information on how your son is doing on his treatment regimen. Has his success with PSC also been noted in his UC? Has he had any colonoscopies recently, and do they show reduction or elimination of inflammation or ulceration? The fact that some of our respective regimens may be successful with PSC, but maybe not UC, still concerns me.

Please contact me at [e-mail] or through the HealthUnlocked web site.

Warren

[healinggreen]

Hello Warren. Thank you so much for your posts here. I am just beginning to research LDN based on your and others' recommendations. How is your son?

My daughter also has UC (DX when she was 15) and PSC (DX when she was 18). She's now 21 and is in remission with no symptoms beyond occasional joint pain, but her PSC is at stage 3.

I was wondering if you could point me in more specific directions vis a vis supplements we should be looking at. I'm reading up on Dr. Berkson, who seems remarkable.

Currently my daughter has cut out gluten, drinks very little, and is taking omega-3s, glutamine, melatonin, modified citrus pectin, vitamin D, and possibly some others I'm forgetting. She is also taking sulfasalazine and urso (the latter mainly because it seems to have an preventive effect re: colon cancer in UC patients).

thanks so much for any info you can provide, and I will keep researching.

Holly

[slck in reply to healinggreen]

My son is doing very well. He continues on LDN and a regimen of vitamins and supplements to maintain and improve his immune system, and diet to keep his colon healthy. (His latest colonoscopy showed only mild inflammation.) He had been taking asecol for his UC, based on his GI's recommendation, but has stopped, with no adverse effects. He is also taking URSO, based on his hepatologist's recommendation, but I do not believe it is doing anything, since the research on it that I have seen does not seem to indicate it does anything related to the underlying condition; but rather just making the bile less viscous and thus reducing inflammation of the ducts as a result.

I believe the LDN, vitamins and supplements, and diet are the major factors that are helping him. He has continued to be dairy free, but did not maintain his gluten free diet for a while; although now he is going back to being gluten free when his latest blood tests showed somewhat higher liver function values. As far as I know, the main vitamin/supplements that he takes are: alpha lipoic acid (European grade), N-acetylcisteine, glutathione (liposomal), methylated B vitamins, D, C, tumeric/curcumin, fish oil, and milk thistle (for liver support).

I have suggested LDN to several of my friends and relatives who have, or know people with auto-immune conditions or cancer. My wife and I are using it prophylactically for immune system support and cancer prevention, with no side effects. I urge you to seriously consider its use, after you complete your research. There are increasing amounts of research, and testimonials that support its effectiveness and limited side effects. If your doctors do not know much about it, then seek others who do, so that you can make an informed decision.

My son's email is [e-mail], if either you or your daughter would like to correspond with him directly.

Hope this helps.

Warren