Unknown Liver Symptoms : Hi I'm new and may... - PBC Foundation

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Unknown Liver Symptoms

Debbweb01 profile image
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Hi I'm new and may or may not have some kind of Liver Disease! I have many autoimmune diseases including APS/Hughes Syndrome! A rare thick blood clotting disease! Also another rare blood disease with thick blood called Polycythemia Vera, Sjogrens, RA/Rheumatoid Arthritis! I recently started Lovenox/Enexoparin shots to keep my blood anticoagulated! After a year on warfarin, I was unable to be properly anticoagulated! Jensen on the shot! I come from Long Island, New York and went on Holiday 3000 miles from home to Arizona, USA! B4 inleft I had severe itching, although I always itch, thought it was from my blood diseases, had brown urine and scaley patchy rashes on foot! I thought it was an allergic reaction to my Lovenox shots, but my doctor in NY was highly concerned it had to do with my liver and wanted me to go to a Hospital Emergency Room! I told him no that I'll be home Thursday night! I do have an appointment with him on Friday! Being so far from home I just thought I'd write to you and maybe u could enlighten me! I must tell you I lost my left leg due to my APS, A rare blood clots disorder! My good foot swelled and was discolored to a purplish tone with from the itching I got scaley patches on skin and spreading! I must say the itching SEVERE to say the least! There is no let up! It's every part of my body and very uncomfortable to say the least! Any opinions wud be greatly appreciated! Thx in advance and GODSPEED to all of you!!!

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Debbweb01
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Ktltel profile image
Ktltel

Debwebb01,

You poor thing. It seems one autoimmune disease begets another. Please find a truly good functional medicine doctor or at least a good naturopath. Work along "with" your general practitioners. I can't tell you if you have PBC or not but, keep the appt. I'm for working at getting to the "root cause" of the AI and not just taking more and more meds to mask the symptoms. I realize some medications are a must. Many though carry additional risks with the side effects. You probably know all of this. Keep me posted.

Thinking of you,

Stella

Debbweb01 profile image
Debbweb01 in reply to Ktltel

Thx so much for ur response! Greatly appreciated!!! GODSPEED

butterflyEi profile image
butterflyEi

Hi Debbweb01

Wow! That is a lot to cope with. Having only just read this I am hoping you are on your way home and will get some answers from your doctor. I can understand problems with itching though but not to the extent you seem to have. The specialist recommended the use of a menthol cream which I bought at 2 per cent anything less is not effective. It is only a temporary relief but I am glad of it. Let us know how you get on.

Best wishes

slck profile image
slck

I would very much agree with the reply from Debwebb01 concerning finding a functional medicine doctor and/or naturopath. In the meantime, I will provide a post concerning my son's treatment for 2 auto immune conditions, that I usually submit to people who are newly diagnosed with some form of liver auto immune condition, or other auto immune conditions, and it is below. I would urge you to start reading many of the links and resources below concerning diet, vitamins/supplements and most importantly LDN, and become aware of how a regimen that includes all 3 of these items offers a good strategy for improving all of your auto immune conditions.

********************************

When I see posts for newly diagnosed people, I routinely reply citing the experience of my son, who although not having PBC, does have PSC (Primary Sclerosing Colangitis), a very similar liver condition that is also thought to be of an auto immune nature. He has been successful in using diet, vitamins/supplements and most importantly Low Dose Naltrexone (LDN) to return to a normal condition. All his liver function values have returned to normal for about 1.5 years now, and all his inflammation markers are normal as well, and he is symptom free. Go the the LDN Foundation web site; read their materials and links to Dudley Delaney's web site and blog; and Google Dr. Burton Berkson and watch videos about him, particularly his 2009 presentation at a National Institute of Health conference, and also read his books on LDN, Alpha Lipoic Acid and B-Vitamins, (related diet strategies) and you will find his regimen of vitamin/supplements that improve your immune system, and the method of action of these items to help your body's immune system return to normal. Gluten and dairy free diet can help to reduce leaky gut and related intestinal irregularities that are typically at the root cause of many auto immune conditions. Some people also believe that a non-GMO diet will also help. Join the Yahoo LDN User Group and you will receive emails from LDN users and questions from inquirers about the application of this inexpensive and low risk/side effect drug in addressing a range of auto immune conditions and returning your body's immune system to normal or more normal condition. Many doctors do not know about LDN, or, since it is used "off label" for auto immune conditions, will not prescribe it, so do not be surprised if you get a negative reaction from your doctors. Find one who is LDN knowledgeable, or search the above resources about its availability not through your current doctor.

It takes a lot of time and effort to do the research and investigation, but with main stream medicine offering very little help to halt the progression of many these auto immune diseases, I believe the above items offer a reasonable and low risk strategy to address auto immune conditions. You can contact me if you have any questions, and I will try to point you in the direction of resources that will help to answer them.

Warren

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