PBC and new here.: Hi, I am new here also... - PBC Foundation

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PBC and new here.

Maur22 profile image
23 Replies

Hi, I am new here also. I failed the AMA 2 years ago at age 48 1:380 high alt/ast and had some problems with unbearable pain in the upper torso under the lower right rib and down a few inches radiating over towards the left. Feeling like I had itchy bugs running on me. Was just aweful. I was on Amoxicillin at the time. Upon stopping the Amox. my alt/ast went to normal and no more symptoms but the AMA remained the same 2 more times. I went to a specialist and he wanted a biopsy but after reading about PBC being genetic I decided to see if either of my parents were positive for AMA. Mother negative.. father never tested. About 9 months ago my Dad took Amox. same thing that happened to me happened to him. But he was told that he had liver cirrhosis. Since he never was a drinker it seemed odd so I encouraged him to get that AMA test and he failed. 1:800. Just wondering if there is a correlation between amoxicillin and PBC?? (He had no symptoms before the amoxicillin and is 75 y/o..in fact he was working full time still. ) My symptoms went away for the most part except for fatigue and red blotches on my palms in the morning so I just ordered Omega 3 and Ox bile as there is no Hepatologist Dr. where I live now so I am on my own. I also have zero tolerance for carbs, gluten and processed foods so I live on fresh fruits/veggies and very little meat. I haven't given up dairy yet. Any feedback from othes about the amox/PBC correlation?

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Maur22 profile image
Maur22
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23 Replies
Ballymahon2 profile image
Ballymahon2

You do need to see a specialist who is familiar with pbc

Maur22 profile image
Maur22 in reply to Ballymahon2

Thanks. There is not one here. I will look in an area that is a 4 hour drive once the snow storms end.

Ballymahon2 profile image
Ballymahon2 in reply to Maur22

Where do you live

donna01 profile image
donna01

Interesting question Maur22. Reason I say this is because I was on and off amoxicillin my entire life with chronic ear and throat infections. Some say that people with a lot of UTI'S seem more susceptible to this illness but in my case, that is not true. I've only had 2 in my life. I recently had an endoscopy and they found H pylori in my stomach and was put on Amox and clarithromycin for 14 days, twice a day! It was difficult with taking urso 3X a day, trust me on this. I have recently read some info from the book "Medical Medium" by Anthony William and he suggests we have all been exposed to Epstein Barr Virus and that is the main cause of autoimmunity. I am really starting to wonder and do as much research as possible. I am just hoping to wake up one day and find something online stating "THEY FOUND THE CURE" to this illness. I've said it before and will say it again, there is something we all have in common that caused this and right now I am finding the Epstein Barr diagnosis rather interesting. Google it for yourself.

in reply to donna01

Your reply about being on amoxicillin for chronic ear and throat infections resonated with me I was the same all through my childhood and still suffer ear problems and infections, i had surgery again a few years back, now my thoughts are not the Amox, but the removal of my tonsils... I too have never suffered UTI’s.

donna01 profile image
donna01 in reply to

I do have my tonsils but do have left ear hearing loss from all of the throat/ear infections. They do say my right ear makes up for it though. Did you happen to read about Epstein Barr Virus? Apparently, it can just sit in our systems whether we get mono or not and is difficult to find the proper testing for it. Check it out. I find it rather interesting and want to eradicate it.

in reply to donna01

I just been reading about it, I also remember my GP asking if I’d ever had it, at the time of my bloods being taken for diagnosis of PBC, as the antibodies to it were showing up in my blood work... I must say i can’t ever remember having it but then with so many throat infections who knows maybe I did and it was missed at the time.

donna01 profile image
donna01 in reply to

Wow! So it did show up in your blood? From what I have read, they will not test you for it unless you ask for the testing. Check out this page and this article in particular under EPSTEIN BARR AND AUTOIMMUNE DISEASE LINKED TO VIRUSES.

"Viruses have long been suspected by immunologists of awakening autoimmune diseases. Much of this thinking has to do with viruses' remarkable ability to confound the immune systems of their hosts. EBV infects 95 percent of humans and, time after time, shows it is associated with MS through epidemiological and serological studies. Nevertheless, more concrete evidence is yet to be provided.

Part of the problem of dealing with EBV infection is the fact that the virus is stealthy enough to hide in B lymphocytes and go into hiding (become dormant) for the remainder of the host's life. In other cases, the host's immune system will fail to control the EBV, thereby reactivating it. In some cases, this can be tumor-causing."

envita.com/lyme-disease/key...

Maur22 profile image
Maur22 in reply to donna01

Mono is Epstein Barr I think and yes I had that.

kimpekboyd profile image
kimpekboyd in reply to Maur22

I believe that Epstein Barr was a trigger for me as well. Gluten and processed food are tough for me too. I have removed those and most dairy.

Best to you!

Maur22 profile image
Maur22 in reply to kimpekboyd

Thank you.

LisaC22 profile image
LisaC22

I have to take amoxicillin daily for the rest of my life. My liver specialist prescribed it so he has no concerns in me taking it and having PBC also.

donna01 profile image
donna01 in reply to LisaC22

Lisa, can I ask why you would have to take that the rest of your life? Also, are you on a good probiotic and prebiotic? If not ,you really should be as it ruins your gut flora. The gut is a HUGE issue when it comes to illness. Just thought I would throw that out there :)

LisaC22 profile image
LisaC22 in reply to donna01

Hi Donna. I have no spleen. Certain infections could kill me. It’s standard practice for all splenectomy patients to take prophylactic antibiotics. I’m certainly not crazy about the idea but it was made very clear to me by two different immunologists that if I stopped taking them I would be doing so at my own risk. Yes I take probiotics. & thanks 😊

mjk98 profile image
mjk98

I blame my PBC on Levaquin when I had pneumonia and was hospitalized prior urgent care prescribed Levaquin 2 weeks before I ended up in hospital and then in hospital they gave it to me back in 2014.... my recent liver biopsy said can't rule out drug induced which leaves me to believe it was Levaquin and apparently the drug company settled on huge lawsuits with this drug causing liver damage I asked my doctor of course he says no but I know that's how I got it as that's when my liver enzymes started to go up...

Maur22 profile image
Maur22 in reply to mjk98

Interesting...I was monitored with weekly LFT's as I was on a PICC line IV and never had elevated LFTs until they switched me to Amoxicillin.

Aprilbalech profile image
Aprilbalech

I have never had elevated lfts or a positive ANA until I was given Kexflex for a UTI in November. I now have a positive ama with very normal lfts. I am currently under observation to see if my lfts go up again. I am being checked monthly. I am now terrified of antibiotics. Still no diagnosis because things return d to normal after the antibiotics were removed.

Maur22 profile image
Maur22 in reply to Aprilbalech

I was wondering if that is the right thing to do is wait until the LFt's rise. My Dad's LFt's were normal until he hit stage 4. He had no idea he had PBC. Seems like it would be better to take the medicine before it gets to the liver damage stage. That is why I ordered the OTC medicines. I am just going to try it since the one Dr. I saw in FL didn't seem concerned in fact some of the Gastro's don't seem to know about PBC.

Aprilbalech profile image
Aprilbalech

It’s so scarey to trust these doctors. My GII is also a hepatologist and he claims you have to have elevated enzymes for 6 months to have liver disease. I just don’t know what to believe.

Maur22 profile image
Maur22 in reply to Aprilbalech

Really because his regular annual physicals over the years he had normal LFT and they told him he had cirrocis yet he never drank. I made him tell his Dr. to test his AMA it was not the Dr.'s idea to do the test. Low and behold it was PBC. The Dr.s either don't care or don't think. It is really a shame that we have to tell them to run a test.

Maur22 profile image
Maur22 in reply to Aprilbalech

Did you get the AMA April?? Anti Mitocrodrial Antibody Titer is the blood test.

Aprilbalech profile image
Aprilbalech

Hi yes and it was a positive low titer. It said the results were equivocal. He said he thought it could be autoimmune hepatitis because my spleen is mildly enlarged but it has been enlarged on every study as far back as 7 years ago. He said he would do a biopsy if the enzymes elevate. My alk phos has never been elevated but the alt and ast were when I was on the antibiotic. I’m not sure what to do.

Maur22 profile image
Maur22 in reply to Aprilbalech

Same thing...antibiotics are bad for the liver. Those numbers come down when you come off of the intibiotic. You can take vitamins like I do, I take L-Glutathione 500 mg, Specific Care™ Liver, Nordic Naturals Omega 3 690 mg and ox bile

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