Thank you Aniek
Posted by Lymetoo (Member # 743) on :
Good luck getting in to see one! I'm still waiting for my June 18th appointment....made the appointment in March.
Do you think it could be your gallbladder instead of pancreas?
Which abx are you taking?
Posted by laura j (Member # 14257) on :
The pain started about a year ago before my Lyme diagnosis which was in December so I don't think it's due to abx.
The pain is in my upper stomach in the center and also radiates to my back. From what I've read, that sounds like pancreatitis.
Posted by laura j (Member # 14257) on :
.....Sorry, just realized I didn't quite answer your question TuTu.
Right now I'm on Zith. Before that I was on Ceftin. Also, before dx w/Lyme was dx w/Mycoplasma last October and started w/Doxy for that.
Posted by roro (Member # 13383) on :
when i had left side pain, my dr did blood test to rule out pancreatitis. i believe it was enzymes? can your dr at least run the enzymes? its probably something that should not wait if the enzymes come out bad.
Posted by Aniek (Member # 5374) on :
quote:Originally posted by roro: when i had left side pain, my dr did blood test to rule out pancreatitis. i believe it was enzymes? can your dr at least run the enzymes? its probably something that should not wait if the enzymes come out bad.
Apparently enzymes are not always elevated in chronic pancreatitis.
Posted by Lymetoo (Member # 743) on :
Laura, the reason I asked is that I think the abx made my bile duct and/or pancreas issues way worse.
I was doing "OK" the past two 1/2 yrs after having my GB removed. Now I'm having problems of the same nature.
I've been on abx for 8 months for sinus infection...just got off.
I fully believe that the cephalosporin I was on [and others] created stones and/or sludge in my bile duct.
The pain is where you say, but I have other pain and issues as well.
Ceftin may have caused your problems, as the cephalosporins are known for creating sludge.
Your pain could also be your gallbladder. That is where my pain started several years ago.
Posted by laura j (Member # 14257) on :
Thank you TuTu! That all makes a lot of sense. I'm not looking forward to seeing yet another doctor. I'm also really annoyed b/c I did see a GI last year and he did an endoscopy/colonoscopy but never mentioned looking into pancreatitis and was aware of the nature of my pain. He did find reduced stomach motility and hiatal hernia.
Like everything else, I realized pancreatitis is a possibility after researching it on my own.
I'm also terrified after reading the prognosis for pancreatitis and wonder if I'm better off not knowing.
Posted by Lymetoo (Member # 743) on :
Yeah, I hear ya! But if you still have your GB, look there first!
Posted by roro (Member # 13383) on :
quote:Originally posted by Aniek: Apparently enzymes are not always elevated in chronic pancreatitis.
thanks aniek, I am glad you clarified that!
I did not mean to imply that if the tests are negative, that everything is ok. if the tests are negative you still need to see a GI to see if its chronic pancreatitis.
but if the enzymes are positive, and its acute pancreatitis, its an emergency and you need to be seen right away
Posted by Jill E. (Member # 9121) on :
I'm going through this now. I developed upper middle abdominal aching, right-side liver/gallbladder pain (worrisome to me because I had liver damage in 2005 from Ketek) and a few days of pale, yellow stools. Took myself off antibiotics.
One pancreatic enzyme elevated slightly - the lipase - for the first time ever. Continued to go up off antibiotics.
I insisted on a HIDA scan for the gallbladder. My many abdominal ultrasounds showed no history of gallstones or sludge. But I knew from other Lyme patients that the HIDA checks the ejection fraction (ability to contract and send out the bile).
Sure enough, my gallbladder is not contracting. My ejection fraction is 10%. Normal is 35%. Even the drug they gave me to try to get the gallbladder to contract during the HIDA scan did nothing.
GI doc (who I am educating about Lyme) thinks my gallbladder is inflammed and sludgy, despite no sludge showing up on scans, and is probably causing the pancreatitis.
The surgeon who I consulted, who is brilliant, and who let me educate him about Lyme, thinks it all stems from my vagus nerve. He said when the vagus nerve doesn't work, then it affects the gallbladder, then the pancreas gets backflow, etc. We are debating about removing my gallbladder, because it might be healthy, but there's no way to know. Obviously it isn't working, whether it's from the Lyme/Bart affecting the vagus nerve or the Lyme/Bart affecting the gallbladder.
The pancreas is the most worrisome issue to me and my doctors.
I told my surgeon about articles in Lyme Times and the "Bell's Palsy of the Gut" article by Dr. Virginia Scherr that confirm that Lyme causes vagus nerve problems that can cause GI motility issues.
I'm in a quandry about what to do. I can't stay off antibiotics too much longer, don't know if they are adding to my problems or not, don't know if the pancreatitis (Mild) is due to gallbladder or not.
I'll update as I learn more.
Jill
Posted by laura j (Member # 14257) on :
Jill,
Thank you so much for sharing your story w/me and for all the info! I'm sorry to hear you are going through this. I am going to show your post to my GI. Do you have anymore info I could show him that may be useful?
I had an appt. w/a GI today. He doesn't think I have acute pancreatitis but after I drilled him a little he did say chronic pancreatitis is a possibility. He said before ordering tests though that he wanted to see all the records and testing that all my other doctors have done.
He said it could take 3 wks. until he receives and is able to review all of it and then he'll figure out what to do but said we'd probably be doing an MRI at that point.
I don't understand why he won't just order the MRI NOW! Wouldn't waiting cause more damage if it is pancreatitis?!!! I'm so tired of the waiting game as it has alread caused me so much damage.
Posted by lymie_in_md (Member # 14197) on :
My doctor prescribed a Nestmann homeopathic called RUBUS. It's not expensive and is specifically used for increasing pancreatic drainage. However it is sold by practitioner members.
Posted by laura j (Member # 14257) on :
Bob,
Is this something anyone can use even without a confirmed pancreatic problem? If so, how can I get it?
Posted by Tod (Member # 14891) on :
My gastroenterologist who did my camera tour from top to bottom, I described that sometimes my stomach feels like it's "kicking" and he said that's probably my pancreas. Before I got any details, we moved along to another subject and that was that. Do any of you ever feel something spasming, twitching or kicking along with a scary anxiety feeling?
Posted by lymie_in_md (Member # 14197) on :
I get it through my doctor. And yes anyone can use it, it is a herbal concoction supporting pancreatic drainage. You probably could get from a herbalist in your area, I'm guessing. Another way is to contact the organization in the link and ask for practitioner's in your area and see if you can get through their office.
Posted by lymie_in_md (Member # 14197) on :
Tod, yes I had the same kicking sometime back. A lot of heavy metal detoxification and organ drainage changed that.
It's possible it is not just your pancreas but your kidneys as well. If you have any lower back pain you may want to drain your kidneys.
Why don't you also challenge your doctors with how best to drain the pancreas and kidneys. It doesn't hurt to ask these ducks a question or two just to see how ignorant they are. One of the problems of bacterial load is the crap they leave behind. This is why drainage is so important. Otherwise some of this stuff just gets stuck and you end up experiencing spasms and refered pain.
Posted by Lymetoo (Member # 743) on :
I recently read that omeprazole [Prilosec] can cause the liver not to release bile and that creates sludge in the ducts, etc.
I've taken it for many years....trying to get off of it NOW!
Posted by Jill E. (Member # 9121) on :
Tod,
That spasming and anxiety sensation - that starts in the upper middle of the abdomen if that's what you get - is something that other Bartonella patients and I have discussed as getting. From our understanding, by discussing this with some of our well-known LLMDs, can be Bart - and again, I think it is related to the vagus nerve, which then affects several organs.
Interesting posts about pancreatic drainage. The homeopathic drainage I sometimes use includes kidney, liver and lymphatic, but nothing about pancreas.
Jill
Posted by Tod (Member # 14891) on :
Heavy metal results back this week. Will report, thanks everybody.
Posted by DoctorLuddite (Member # 13853) on :
Chronic pancreatitis is long term inflamation of the pancreas, but will result in calcification of the pancreatic duct, and those calcifications are often visible on plain x-ray, a low cost diagnostic tool that is routinely used in ER and outpatient evaluation of abdominal pain. Seeing those calcifications on such a study is diagnostic of chronic pancreatitis...
Posted by laura j (Member # 14257) on :
Thank you Doc,
It sounds like my GI doesn't want to expose me to any further radiation. He mentioned maybe wanting to do an MRI.
Posted by SouthernCO (Member # 11167) on :
laura j:
I was hospitalized for 4 days because of pancreatitis in Nov, 2006. Amalase count was 5000, but dropped to 100 then was released.
Thought I had chronic pancreatitis for several months after that. The pain was in the upper chest but more on the left side.
Had been on "Healing Lyme" protocol during this period of time. When I dropped milk thistle, the pain and digestive problems went away.
When I checked medical sites and historical info on this site, I found that a small percentage of patients can have pain and digestive problems because of milk thistle.
Since I don't know if you are affected, please accept this as a caution to anyone taking milk thistle. This is not a common side effect but it made me very miserable for about 6 months to a year.