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Primary Sclerosing Cholangitis (PSC) - Online Support Group

Hi from Germany and I am going to heal myself :-)


#1

Hi All,

I am Joerg, 35 from Germany and since I am 18 I have Primary Sclerosing Cholangitis together with CU. Fortunately I had no problems with it and apart from taking medicine it was fine.

Until this year in April. Since then I have pain in the area of my liver and all the blood values are going up. But usually after some days they are going down again. This is currently an up and down and I am thinking about my first ERCP to widen the bile transition.

But this only my history and status quo. Going forward I want to get rid of PSC in my body. Since day 1 the conventional medicine is telling me that it is not possible to cure. I believed that until this year.

Now I believe I can totally heal myself and only have to find the right way to do it. I know, this might sound crazy but I don’t want to be reactive and thus want to be proactive and look for different ways to treat this disease.

Thus my question: is anyone in this group or does anyone know who did heal himself/herself from PSC? I did not find anyone in the German speaking area so far, but I am certain around the world there are one.

So if you can point me in a direction it would be wonderful.

If anyone wants to join my path of healing from PSC, let me know J

I am happy to be in the group and someday we might change the name from livingwithpsc.org to getridofpsc.org J

I wish you all a wonderful day and a great week,

Enjoy!

Joerg


#2

Good luck. I don’t doubt that there may be some things that may inhibit the progression of psc, nothing has been found to prevent or eliminate/cure it.


#3

Thank you Jeff for your reply,
I think time will tell. 50 or 100 years ago we said the same thing about other diseases which are today easily curable. So I will keep looking :slight_smile:


#4

God bless you joerg
Everything may be possible.
In Iranian traditional medicine you must cool your liver to rescue it of this progressive cycle. It could be hint for you.


#5

Good luck Joerg! I have tried some naturopathic options of no avail. I have have this disease for at least 2 years and it has really begun to accelerate lately with 6 ERCP’s in the last 12 months. To start eat as lean of meats and you possibly can and limit cheeses, alcohol, etc. Make you are seeing a Hepatologist asure and not just a GI doc. I know lots of Germans who come to the USA you may want to consider.

Thank you,

Kevin


#6

Hello Mahmoud,

Thank you very much for your reply and your hint.

Regards,
Joerg


#7

Hi Kevin,

Thank you very much for your replay. First of all: all the best for you!

Thank you for feedback. I will be careful what I eat an drink. Thank you for that advise.

What are the Germans in the US doing? Do you guys have an expert on PSC who can help or why are they coming?

Regards,
Joerg


#8

Joerg,

I work for Daimler and over the years my German Friends have gotten sick and they stay here because they felt treatment plans were better here. I am currently waiting outside the operating room while they evaluate the deceased donors liver.

This is the second time this week, sometimes they are unusable!

I am at University of Michigan Hospital. Other great US hospitals for PSC is Cleveland Clinic, Mayo Clinic, NY Presbyterian, University of Pittsburgh! Hopefully, this liver is a good fit for me. I will reach out to you in a few weeks. I read the the disease is most common in Northern European countries. My family is from Poland but you never know a few centuries ago. I have been told that the US is the best place for treatment. My hospital has people from around the world. I went from a Meld score of 8 to 25 in two weeks.

All the best,

Kevin


#9

Vancomycin helped slow it down for me…but the only “cure” I know of is transplant.

I’m about six months post transplant, and I’ve never been better. My blood work is better than it’s been in the past 20 years.

Some people are afraid of transplant…and try to prolong it as long as possible. Just know that if you do, there’s an increased risk of liver cancer while you have it, and that can take the transplant option off the table.

I’m not sure what treatments are available in your country, but if you are ever on our side of the pond (USA) I’m sure there’s plenty of guys here who can recommend great doctor’s. I wouldn’t be here today without mine…


#10

Hi Frank. So happy to hear you are doing well post transplant.
May I ask you how long have you been on Vanco pre transplant, what stage were you when you started Vanco and what dose/brand were you on.
Really appreciate your feedback on that… and again, I’m so happy for you. All the best wishes. Daniela


#11

I started vanco in 2014. When I started, my doctor thought I was too far along to benefit from it. I was having to get ERCPs every few months. Starting the Vanco did help stabilize things for a while. It definitely helped me. Had I started it sooner I would probably have bought myself more time.

I was on oral vancomycin… luckily my insurance covered it. At first my doctor didn’t know about that as a treatment option, and didn’t want to try it…bit I asked him to contact Dr. Cox in California, who was leading the clinical trials on it. After speaking with him, he was willing to give it a try.


#12

Hi Jeorg,
I love your attitude!! Our son was diagnosed last year at age 23- symptoms were severe abdominal pain, nausea when turning in right direction.
After meeting with several hepatologists and being told the same thing in various degrees- ( but all same end result- no treatment/cure)- We went proactive- reading many hours of posts found a few people who have totally restructured their lives to be stress free- seems that is top priority- getting plenty of sleep, drinking plenty of water, then changed diet completely to vegan, no gluten,oil, salt, sugar and obviously no alcohol. I am not saying it’s been easy- my husband and I changed to eat this way too in solidarity- but he has been completely pain free three months after starting this diet almost a year ago. His big challenge is managing his stress levels- he is a higher stress kind of guy. He and his wife were blessed with a baby boy recently so he’s not getting much sleep- but that is to be expected. We are planning to do a repeat MRCP in November to see if it has actually changed anything physically( he had a 3 cm. lg domininant stricture in one of his bile ducts)
I am NOT endorsing this diet for others- but it seems to be helping- as far as no more pain at all- so we find that encouraging. Plus- my husband and I have lost weight and feel better than we have in years! I’m totally off of my thyroid medication- my mother is off one of her high blood pressure medications- her BP hasn’t been this normal in years! Just saying- I think there is something to this for our son and family anyway :slight_smile:
I also agree with Mahoumad- cooling foods-are a must for liver disease.
I agree with your attitude and we hope to find a cure as well!
We are still planning to work with a hepatologist- we do believe modern medicine along side natural is the way to go- not one at the exclusion of the other. Keep us posted on what you find, and your progress! Best of luck!!


#13

Hi Kevin,

Thank you very much for your reply. I really much hope this liver is a good fit for you and that everything goes well.

Let me know how you are doing.

Regards,
Joerg


#14

Hi Frank,

Thank you very much for your reply. Regarding doctors I think I am in good hands. My regular appointments I do in Munich (Germany) but from time to time I am seeing Prof. Dr. Beuers in Amsterdam. He is see as one of the leading doctors in Europe in terms of PSC. But it is always good to know that there are more experts out there.

Happy to hear that you are doing well post transplant. I hope I have a long way to go until I get a new liver. Right now I am before my first ERCP (although I am diagnosed 17 years ago).

Regards,
Joerg


#15

Hi Hinda,

Thank you very much for your reply.

Can you please give me more information about the diet you son is doing? I would love to hear more about it.
Also I have never heard about cooling foods? What do mean with that?

I am also a strong believer that traditional and conventional medicine alongside each other is the best way to cure it. Only if both fields work together there will be a stress-free and live.

Regards,
Joerg


#16

Frank, thank you very much for the info. All the best wishes. Daniela


#17

Congratulations on adopting a positive approach to this. I think that health and diet play a part in recovery although there is no direct evidence in this regard and I have found that Hepatologists won’t subscribe to this view as there is no evidence. Having said that I have heard hdpatologists who are well respected in the field of psc state that the bodies innate way of maintaining health has very likely something to do with how quickly the disease progresses, they just don’t know how. Also, I have taken an Ayurvedic approach to diet as I have mentioned in another post. I agree with Mahmoud and Hinda that eating cooling foods is probably the best way forward. I have cut out red meat, caffeine, gluten, nightshades, all heating foods, drastically reduced dairy and fat. I eat a lot of vegetables fruits, chicken, fish. I saw an Ayurvedic practitioner and after about 6 months on the diet my lfts all fell into normal range. They have since crept up, but then again I haven’t been following the diet as strictly as I was before. It needs a serious amount of dedication which I achieved by paying an Ayurvedic doctor, on the thinking that if I am paying someone I am financially committed, so best do exactly what he says! I don’t think diet is a cure by any stretch of the imagination but I think that one day, in the future when doctors have a handle in this disease, it will be realised that diet has something to do with it. Also, it should be noted, that in Ayurvedic terms, stress and anxiety is ‘heating’ so will take its toll on your physical body and especially the liver if you have unprocessed emotions, as it is believed they are stored in the liver. Stress needs to be managed as much as possible. For me, I was going through ptsd symptoms when I was diagnosed and the stress of the diagnosis on top of this really put me in a bad place. I have worked with a counsellor to help get my anxieties under control.


#18

Hello Rick,

Thank you for your reply.

I have some questions to this: What do you mean with “eating cooling foods”? I have never heart of cooling or heating foods to be honest.

Thank you!

Regards,
Joerg


#19

Hi Joerg,

As luck would have it the liver was not useable. We are now in the process of qualifying my son to be a living donor. I am still on the wait list but my health is deteriorating quickly so we need to move fast.

How are you doing?

Kevin


#20

Hi Joerg,
Difficult to fully cover here but Ayurveda is basically an Indian health system that has been used for thousands of years where the basic premise is ‘food is medicine’ and depends on what you eat, when you eat it and not mixing certain combinations of food. It subscribes to the view that different people need different foods in their diet to attain full health and some people need more cooling foods and some people may require more heating foods. The guy I saw in the UK was Sascha Kriese, who by chance also sees people in Germany I believe. His website is Ayuseva. He determines what type of diet you need to follow and prescribed gentle herbal remedies, based on an Ayurvedic assessment of your health (totally different to a western way of diagnosis by the way). If you google Ayurveda, you will find lots of information. Let me know if you want to get in touch with Sascha. He may also know good practitioners in Germany as he is very senior in this field.