About two years ago , I went to the ER complaining of sever lower back pain (right side), pain went straight through to the front lower abdomen. burned like fire when I urinated. Felt as though I had to have a severe bowel movement ( cramps) but were false cramps. At the ER, they did blood work, urinalysis and a CT scan without contrast. I thought maybe I was passing a stone but no history of it.. After CT scan, Doc came into room and asked how long have I been a heavy drinker,? shockingly i informed him clearly i AM NOT a drinker. "maybe" 1 beer during a special function, a glass of wine on new years but in general, not a drinker.
He seemed to not believe me but never the less informed me the ct scan showed signs of liver damages and possible cirrhosis of the liver. My AST, ALT levels were elevated as well. About 4 nights later, no improvement and I went to the ER again nearest my home ( different hospital), this time they did a CT with contrast, blood work, urinalysis and said the liver shows "signs" of fatty, but otherwise remarkable liver. All the labs with AST, ALT, bilirubin , white blood count were all still abnormal. I also was diagnosed with Hepatitis B .Having no insurance and unemployed, I didnt have a specialist I could see. All of this started in 2010.
Jan 19, 2010 CT SCAN W/CONTRAST
History: Dysuria, left-sided paine ( whatever Dysuria means?)
The liver demonstrates homogeneous attenuation throughout without evidence of focal lesion. Gallbladder, spleen, pancreas and adrenal glands appear normal. A 1.6 cm round low attenuation lesion is seen in the midpole of the right kidney. This may represent a cyst. Otherwise, kidneys are unremarkable. There is no evidence of renal stone or obstruction. Abdominal aorta is normal in caliber. Bowel loops are unremarkable. The appendix is normal in appearance . No free intraperitoneal air or fluid is identified. The bladder is unremarkable.
1. Probable small right renal cyst. No evidence of renal stone or obstruction.
2. No radiographic findings to suggest appendicitis.
3. No acute intra-abdominal abnormality.
I eventually go in with the local clinic to see a regular family doctor who has since, been maintaining blood work lab tests to keep an eye on things. over the past year and half. It has not gotten any better. Like clock work, it seems every 4-6 months, im having to go to same ER with same complaints, lower back pain, burning urination,etc. they do the same blood work and usually the liver enzymes are all elevated.
In the past year, ive started having issues with : dizziness, fainting, MAJOR fatigue, exhaustion, weakness, depression, confusion, disoriented , memory issues ( forgetfullness)...In June of 2011, I was at home alone and started having a spell of confusion, not knowing where I was, dizzy, didnt know who my dog was. I called 911 and and went to same ER by ambulance. I am a 38 year old male tattoos all over, get to ER, they treat me as if im stoned on something or high. I inform them to look at my charts and told them my medical problems and again, look at my charts.
Same thing, doc came in, seen me, diagnosed me with a urinary tract infection.
April 16 2011 went to ER - blood platelets 76L , MPV 11.1, Total Bilirubin 1.1H, ALT 86H, AST 63H.
April 21 2011 went to ER - urinalysis : Hemoglobin-urine MODERATE A, Urine RBC 58H, Urine Leuko. Esterase Moderate A, Urine WBC 75H, Urine Bacteria RARE.
July visit with my doctor at clinic -
HEP B SURFACE AG A
HEP B CORE AB IGM A REACTIVE
HBSAG CONFIRMATION - POSITIVE
HBV real-time PCR, quant
HBV as IU/mL >170,000.000/mL
unable to calculate result since non-numeric result obtained for component test.
****( my doctor said this meant to my viral load for the hep b virus was higher then the test could count ?)***
HBV as Copies/mL >989,400,000 copies/mL
Log 10 HBV Copies/mL
Unable to calculate result _______________________________(same reason above).
The reportable range for this assay is 20 to 170,000,000 IU/mL
(116 to 989,400,000 copies/mL)
After this test in July 2011, my doctor at the clinic said it basically means my Hepatitis B is not getting better but worse. She diagnosed me with Chronic/active Hepatitis B with Cirrhosis of the liver and acute complications such as thrombocytopenia ( low blood count ) as well as possible eppisodes of hepatic encephalopathy ( which would explain the spells I have of confusion, memory issues, dizzy, faint, disoriented etc.
She wrote me a note and encouraged me to take to DSS and apply for emergency adult disability/medicaid so I could get into a Specialist for more thorough testing and treatment. Have yet to see a specialist, no insurance, been turned down time and time again for disability and medicaid but finally got a medicaid hearing in feb and waiting on a court hearing for ss disability.
The other night, I had to, once again, go to ER that i usually go to at the local hospital for same reason. pain lower back going to front, slight burning when urinating, tummy cramps that are false. In the ER - I explained my medical history, current conditions, meds im on , my diagnosis's. I informed the nurse to review my chart from ALL the times ive been there for same reason past 2 years. It's always them telling me, "urinary tract infection", but no one ever wants to see if my liver has gotten better, worse, the same etc. Doc comes in, takes blood , urine , gives me antibiotics and something for pain/cramps and tells me to follow up with my doctor ( repeat )...
This time at the ER - doc came in room for about "2 minutes", didnt touch me, didnt feel or press on my lower tummy, nothing. Just told me they would do some urine test, blood work and give me a CT scan no contrast.
In the end, The doc returned to the room and said, "urinary tract infection", said CT didnt find nothing. gave me a script for antibiotics. I asked if they checked my ATL and AST levels to see if my liver is doing better, worse, same? he stated they didnt run those set of tests. I asked if the CT scan showed any improvement/worsening of the liver? he didnt check for that but stated the radiologist said it was unremarkable.
I am at a loss on a few issues -
The ER having all of my medical records, why they gave me a 3rd CT scan in less then 2 years ( that is a lot of radiation- and if he were checking for stones, could have done an MRI or US-ultrasound ).
Knowing my previous history, why they wouldnt automatically check my liver enzymes being they should be checked at least every 6 months.
If the didnt find nothing in the CT w/out contrast regarding my liver - DO I EVEN HAVE cirrhosis or liver disease? wouldnt it have shown up on the CT? It seems by them knowing of my Hep B, they would have checked it again also but did not!
When I asked the ER doctor if he was giving me something for the pain such as prescription strength Azo ( makes you pee bright red and helps numb the urethra from burning ), he told me to go home and just take some tylenol - At this point I figured he was a quack being that any physician should know someone with possible liver disease should not be taking Tylenol. That is of course, if i "DO" in fact have liver disease..any advise from anyone on these boards is SO GREATLY appreciated. I dont know which way to turn. I NEED TO KNOW what i do, and/or do NOT have.
sorry the post is very long and i did not read fully because in US main tests and machines to monitor liver and hbv infection are not available (just marketing reasons, even third world now has these...)
to monitor your status Ultrasound and ct scans are useless, they cannot quantificate liver fibrosis and liver damage, so you need the following to have a clue:
therapy to block liver damage:
tenofovir (in case you have kidneys problems entecavir).
no other drugs are safe because all the others make hbv mutations and worsening of disease after a they work for a short period and may make future drugs useless
fibroscan monitoring every 6 months to see if liver is worsening or imprving, this is not available in US
change life style and food, no fats, no meat, no US diet, only mediterranean diet (fresh vegetables, fish, very few white meat, virgin oliv oil the only fat allowed), lowering of bmi to 22-23, this is to clear fatty liver
vitamin d3 (only natural type, no synthetic type) supplements to keep serum vitamin d25oh to 50-80ng/ml, the dose from 5000 to 10000iu daily according to the deficency.vitd25oh and serum calcium check every 2 months until all stable.
when you reach optimum vit d levels lower to 4000-5000iu until you get what your maintenance dose is
from the tests it looks like you have cirrhosis or severe liver damage, platlets are increadibly low, i had cirrhosis but never had so low platlets, fibroscan only may show how bad liver is, i do suggest to avoid biopsy with such damaged liver, fatty liver is also common in this state and i had it too, just follow my posts on how i resolved both in just 1,5years
antiviral therapy is a must as soon as possible and if tenofovir doesn t make hbvdna undetactable and ast/alt normal by 6 months or even faster i do suggest tenofovir+entecavir to have a fast response and almost zero risks of failing with these antivirals which are the most potent on hbv, if you fail these there is no other so potent
as to the doctor you have see if you went to a barman or butcher maybe they could manage your situation better, do find a real doctor as soon as possible keeping in mind that both most doctors and most liver specialist are ignorant on hbv and dont know how the virus life cycle, so getting to these type of doctors can be even worse that the disease itself, just go to the most updated and best in your area, if you have no idea just post a request here and other members will help
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