I'm in the hospital with a rare disease help me

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Okay so I used to be an opiate user about 7 years ago I haven't touched any narcotics in that long but I did however find a dietary supplement that made it feel like I was on opiates and it helped my pain gave me energy and it really works it's called kratom I've been taking it for a year-and-a-half and out of nowhere I've been getting very nauseous and puking up straight bile so I figured that it was getting me sick and I went to the hospital when I got here I was completely jaundice my eyes and skin were bright yellow my liver enzymes were supposed to be between a 16 and 61 to be normal mine was 1300 so right away the doctor said that it was hepatitis because my liver was inflamed so he ran blood work for every type of hepatitis and it all came back negative so then he checked Every chemical and the supplement kratom and could not find anything in my system that would damage my liver from kratom so he's convinced that it's something else I was also tested again for diabetes because he thought I might have a case of it because my dad died from it also came back negative then my doctor scared me and said that it might be pancreatic cancer ultrasound and Cat Scan later negative now my doctor thinks that it's hemochromatosis that I have too much iron in my blood and my liver is not working correctly enough to make it leave my body once again blood work was taken and it came back negative I've been in the hospital for 6 days from a 1300 after all the saline drops after an all liquid diet my liver enzyme level is still in the 800s when it's supposed to be below a hundred I am still throwing up every night I have not been able to move my bowels in 2 days the pain in my stomach and abdomen is unbearable I was refusing to take narcotics in the hospital because I don't want to go back down that road so I was taking Toradol which after 2 days my body became immune so and was no longer working for the pain so then my doctor put me on one milligram morphine and it did not even take the edge away from the pain in my stomach I am starting to lose hope the doctors have no idea what's wrong with me in the meantime I have a fiance and a three-year-old son that misses me so much and wants me to come home but the doctors are saying that I cannot be discharged and the condition my liver is in I am only 29 years old and I have a very rare condition that I could get very sick and possibly die from because none of the doctors know what it is and all of my blood tests are coming back negative please if you're a doctor or Noah doctor run this by them and please let me know what I can do my name is Kyle rzepski and I am desperate to feel better I also thought that it might be a withdrawal from the dietary supplement Kratom I was taking but after 6 days in the hospital and fluid constantly running through me by now any drug would be out of my system and instead of my levels going down every day they're staying the same and slightly increasing so please help me

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10 Replies

  • Posted

    I have autoimmune hepititus.  Have they mentioned that as a possibility?   There is not a test for it. They just have to rule everything else out.    Graves’s disease is another possibility.. 

    Are they putting you on prednisone or Imuran?   This brings your liver enzymes down.  Are you I. A good hospital?   Ask the Drs if they considered autoimmune hepititus?  They should be suspecting that ! 

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    • Posted

      They put me on steroids and brought my levels down i was actually discharged yesterday they released me and said i have hepititis which is just the imflammation of the liver no letter they said it could be hemochromatosis but the test couldnt be done until my liver is not inflammed so i left not knowing what is wrong with me im still having pain its now been 4 days since i passed my bowels i still have jaundice and i have to wait to see a doctor until my insurance kicks on in 2 weeks so im basically screwed if this comes back cuz i have no idea what it is
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    • Posted

      Did they send you home continuing to take steroids like prednisone or Imuran? 

      Ask them the next time if they are considering Autoimmune Hepatitis.  It's not a letter type either. 

      I'm sure they told you no alcohol?   Eat and drink healthy.  Keep me posted. 

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    • Posted

      Nope all he did was give me 12 600mg ibprofen and my insides feel like there gonna explode but i just cant poop and yes i have been drinking lots of water and eating a lot heathier no greasy foods or fried foods and i was never a drinker tmrw will be the 5th day of not having a bowel movement
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    • Posted

      Kyle,

      Try some very STRONG COFFEE.

      Many doctors do this, every morning. Just one cup every morning. To train their bowels.

      Can't be doing a surgery and stop to go sit on the pot with the newspaper!

      But, be very careful about any meds to relieve it, with a sick liver you can't risk it.

      Cindy

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  • Posted

    Kyle,

    This is Cindy,

    Not good news. National Institute of Health has had rare cases of Liver Toxicity in chronic user of KRATOM.

    Tell your Doc to Google "Kratom and Liver problems". That is what I did and found it in seconds.

    Notify your doc ASAP! Have a nurse call him immediately.

    I wish you luck, you are in my thoughts and prayers.

    Please let me know what you find out.

    Cindy

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  • Posted

    Kyle,

    My 2 other replies are being moderated.

    I hope the docs told you NO ALCOHOL, TYLENOL,(ACETAMINOPHEN) , KRATOM, ETC.

    All of these are processed through the liver. Just eat healthy. Avoid shellfish ( clams, oysters, etc. They can have bacteria and such, that are very bad for the liver). Ask doc to test you for ALPHA ONE, it is genetic, if you are deficient in the enzyme your lungs and liver can be damaged. It is a finger stick test.

    By the way, I am not a doctor.

    I am about 1 in a million. I have Neuro-Behcet's and 3 other genetic diseases. I hope my info helps you.

    Research any herbs or anything like "supplements", before you use them.

    I mean like Mayo hospital, any that have. ". GOV", medical teaching hospitals. Not what Joe Smith is banging away on his lap top, about what he is taking.

    Or on sites SELLING THEM.

    GET SMART YOUNG MAN, look at who is doing the study , I am sure big tobacco has studies saying smoking is healthy.

    Best of luck,

    Cindy

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  • Posted

    Hi Kyle,

    Reading your story is heartbreaking. Im sure you are scared as most of us are when no one can explain what is happening to us. Having a small child make it all the worse. My doctor is having a hard time with my diagnosis as well. He has ask that I reach out to John Hopkins . Maybe if you called a research university?

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  • Posted

    Hey Kyle, this is gunna sound weird but I think I know you? Lol 

    My sister is going through something similar to this and is also a recovering opiate user. Did they ever give you a diagnosis for this? Thanks. 

    -Liz

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