I had my gallbladder out in October and the symptoms I thought were pancreatitis kind of got better but didn't go away. Well they're back on full force now and doctor cannot blame a gallbladder.
*Nausea especially after eating *Left side/rib pain *Pain in my left back upper area, even when I touch it it hurts *Burning feeling or sensation in the back *Gurgling sensation in pancreas area *Anxiety through the roof *Dizziness
I had a normal pancreas on MRI and CT scan they said; but I have read on the internet that nothing has to show for you to have chronic pancreatitis; I actually argued this with my doctor and he got very rude with me about it.
I'm going back tomorrow and telling him I have pancreatitis. Something has fired this up again as bad as it's ever been; whether it was norco, doxycycline, flagyl, kefir; something has irritated it again and I'm as sick as I've felt in 7 years battling lyme and babesia.
I am praying someone here can just discuss this with me. My lipase or amylase has been slightly high for a long time; but recently tested normal which made them say no pancreatitis but makes me think its just the chronic form where levels don't elevate much. This also made my doctor mad that I had done my own research and said this to him.
Coupled with all this, my liver enzymes have been elevated since May. My doctor is not concern because they are not rising. He's said to see him tomorrow. I want to know what to say to him or what to ask him and gather any thoughts I can here. I am so scared. I have a 1 year old and a surprise baby on the way. I do not want to pass before they're grown and I feel like I am dying.
Posted by Clint31 (Member # 16420) on :
Where is everyone? Seems like this place despite thousands of lymies has become the same five folks. It is vastly different from when I joined in 2008.
Posted by randibear (Member # 11290) on :
it's holidays. out shopping or running around.
I can tell you I've known people with cp. chronic pancreatitis. it took years for doctors to find it.
only sure fire test is ercp and that often winds up making you sicker.
most gastros run from pancreatitus. there's aspecialist Indianapolis named lehman and some guy in umm Minneapolis I think.
pancreas problems are touchy. and yes some people have had theirs removed but it leaves them a brittle diabetic.
wish you luck. I've had gallbladder, colon problems all my life. am going through a rough spell now.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by Clint31:
Something has fired this up again as bad as it's ever been; whether it was norco, doxycycline, flagyl, kefir; something has irritated it again and I'm as sick as I've felt in 7 years battling lyme and babesia.
- Which drugs are you currently on?
Posted by randibear (Member # 11290) on :
oh just remembered. enzyme levels do not always elevate with pancreatitus unless it's acute. and then you're usually really sick and in the hospital.
Posted by Clint31 (Member # 16420) on :
quote:Originally posted by randibear: oh just remembered. enzyme levels do not always elevate with pancreatitus unless it's acute. and then you're usually really sick and in the hospital.
I told this to my doctor and he got extremely angry with me
Posted by Clint31 (Member # 16420) on :
quote:Originally posted by Lymetoo:
quote:Originally posted by Clint31:
Something has fired this up again as bad as it's ever been; whether it was norco, doxycycline, flagyl, kefir; something has irritated it again and I'm as sick as I've felt in 7 years battling lyme and babesia.
- Which drugs are you currently on?
Those listed above, and Prevacid from the pharmacy to treat H Pylori. Other than that just paracid forte supplement
Posted by Clint31 (Member # 16420) on :
I don't have acute. This is chronic form. It has hurt and caused bouts of nausea and misery for 6-12 months. In may I felt the weird pain in my left back side. I just keep getting dismissed. Does this Lehman in Indy need a referral?
Posted by Jordana (Member # 45305) on :
Of course, they can miss anything.
My mom had fatal pancreatic cancer and her enzymes were fine.
I pulled this off pubmed regarding the most common pancreatitis causing agents. It's ten years old but there doesn't seem to be anything on your list that's brand new:
The kind of pain you're describing *can* be caused by gut inflammation of any kind, especially GERD. When GERD gets out of control you can get raw inflammation at the esophageal junction even taking ppis.
Sometimes esp. with H. Pylori your gut can become sensitive to probiotics and they can sometimes make things worse. Lactobacillus can be invasive; and it can irritate H.Pylori.
You could try a challenge with a pacreatitis-therapeutic diet and see if it helps? The first line treatment is bowel rest, but since you can't do that very easily outside a hospital maybe you could try a liquid diet with lots of broth for a few days.
Any one of the above listed drugs could be causing your symptoms .. and you are taking multiple drugs.
Your pancreas and/or your liver is saying, "Please stop."
Posted by Clint31 (Member # 16420) on :
So do you guys think I am dying an early death at 33? I am only afraid because of my children who are very young. Or do you think I'll live to come out of this mess?
Posted by Jordana (Member # 45305) on :
No I don't think you're dying. If it was pancreatic cancer you'd be absolutely symptom free until the day you turned orange or lost 20 percent of your bodyweight without noticing it.
It might not even be your pancreas. It might be H. Pylori - when it gets really bad it can be miserable. There's also gastritis, gastroparesis ( which can also be miserable.)
The pancreas area is mid-gut and usually epigastric but all the conditions I mentioned up there can have the same symptoms.
Posted by randibear (Member # 11290) on :
no, people live for many years with cp. and, sorry, but enzyme levels do not often go up.
check out the pancreatitis message board.
are you taking pancretin? what tests have you had done?
like I said ercp is considered the gold standard but most docs won't prescribe it. you've got to be an expert and most docs aren't.
not sure about lehmann but heard he's the best or one of the best in the country.
getting a right diagnoses is key. like lyme, docs say that they have never seen a case, extremely rare, yadayadayada.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by randibear:
like I said ercp is considered the gold standard but most docs won't prescribe it. you've got to be an expert and most docs aren't.
- The ERCP is a surgical procedure.
Posted by randibear (Member # 11290) on :
yes it is. done in hospital and should be done by only the best.
sorry prescribe makes it sound like a drug. should have said ordered orsomething.
even my gastro said he won't touch pancreatitis patients.
Posted by Clint31 (Member # 16420) on :
quote:Originally posted by randibear: no, people live for many years with cp. and, sorry, but enzyme levels do not often go up.
check out the pancreatitis message board.
are you taking pancretin? what tests have you had done?
like I said ercp is considered the gold standard but most docs won't prescribe it. you've got to be an expert and most docs aren't.
not sure about lehmann but heard he's the best or one of the best in the country.
getting a right diagnoses is key. like lyme, docs say that they have never seen a case, extremely rare, yadayadayada.
so slightly raised enzyme levels that i have had for a number of years would not necessarily be indicative of Chronic Form? I have had tests to rule out pancreatic cancer like tumor marker tests and other cancer tests that came back fine.
We cant seem to eradicate H Pylori. Have been treating it 6 months and it still shows up. I also have contracted bad candida again from the flagyl and doxy hardcore combo ( was taking high levels of it) so I started drinking kefir again. That's when I noticed the pain last week in my pancreas area like it was inflamed, some ratting in that left side pancreas area, and unbelievable nausea. Also feels like my BP shoots up when its at its worst; almost like a blood sugar issue.
Posted by Clint31 (Member # 16420) on :
quote:Originally posted by randibear: no, people live for many years with cp. and, sorry, but enzyme levels do not often go up.
check out the pancreatitis message board.
are you taking pancretin? what tests have you had done?
like I said ercp is considered the gold standard but most docs won't prescribe it. you've got to be an expert and most docs aren't.
not sure about lehmann but heard he's the best or one of the best in the country.
getting a right diagnoses is key. like lyme, docs say that they have never seen a case, extremely rare, yadayadayada.
I had an appointment with a pancreatic doctor at cleveland clinic in early december but cancelled it (stupid)! because the nausea went away after gallbladder surgery and the pancreas pain was not this bad.
I am not taking pancretin.
I have had an MRI, CT scan, pancreatic cancer tumor marker tests, and pancreatic enzymes tested multiple times through the years. Also my liver enzymes are tested monthly and they are high but not rising, holding stable at where they are at.
I wonder if this pancreatitis is drug induced from the opioids (Norco taken a few times a week for a long time for pain management) or doxycycline. Or Kefir. Ugh. I am so lost.
Posted by gz (Member # 43818) on :
What about histamine intolerance? That could definitely be causing those types of symptoms, the mildly elevated enzymes could be related to the Lyme/co's.
There are tons of everyday foods that contain histamine or set it off in the body. Anything fermented is high histamine, kefir is a big offender.
Posted by Jordana (Member # 45305) on :
I think it's the kefir, or at least that's part of the problem.
Posted by Haley (Member # 22008) on :
Does it feel better when you treat the H Pylori? Did you stop the treatment for h pylori. Have you had a stool test at a good lab ?
I had pancreatitis for over six years, had many different tests, then finally a stool test showed up positive for a specific bacteria. I treated it and it went away. The pain occasionally returns, but now I know how to treat it.
Posted by Jordana (Member # 45305) on :
Actually what makes you think it's your pancreas at all? Your CT and MRI are clear. Esp if you had these with contrast...the radiology guys can find things no one else can.
What is "slightly elevated"and why do you not believe your doctor that you shouldn't be concerned about your pancreas?
Posted by Clint31 (Member # 16420) on :
quote:Originally posted by Jordana: Actually what makes you think it's your pancreas at all? Your CT and MRI are clear. Esp if you had these with contrast...the radiology guys can find things no one else can.
What is "slightly elevated"and why do you not believe your doctor that you shouldn't be concerned about your pancreas?
Amylase and lipase always around 90 I believe, for years. For last six months I've had a pain in my back where the pancreas sits, and like can feel pain in my left side under the ribs. If feels like a burning inflammation, almost hot. When I have what is like a flare up, it's worse than usual and the pain is worse and the nausea is worse. Also, when things are about to get bad I get like a trembling or spasm or gurgling in the left side of my abdomen where the pancreas tail sits. I am praying you are right though.
I am not certain if these things were with contrast but I believe so bc I remember sensations when they did some type of dye
Posted by Clint31 (Member # 16420) on :
quote:Originally posted by Jordana: I think it's the kefir, or at least that's part of the problem.
This is the common demnoninator thus far when things have gotten bad. These symptoms I was told were due to my dead Lyme infested gallbladder. It was obviously never that. The kefir seems to piss off my pancreas so to speak. Isn't that weird? Or it at least upsets my digestive system. Though I had nausea before I drank kefir; and started it thinking the nausea was yeast. Ugh
Posted by Lymetoo (Member # 743) on :
Kefir is very high in histamine. Why not back off of that for awhile?
I think it's drug-induced myself. I know what these drugs have done to me. Even Tylenol really messed up my liver and I was taking low doses.
Posted by Jordana (Member # 45305) on :
So you had iodine, which is contrast.
OK.
I'm not convinced that probiotics are the Big Answer. I think the microbiome is only part of The Answer.
There was a study -- actually several -- that said that probiotics actually worsened symptoms in people with Lupus because the Lactobacilli had taken over. *any* dysbiosis, including those induced by probiotics, can result in symptoms. Too much lactobacillus and bifidus equalled progression in autoimmune diseases and flares.
There are also studies that say that a sterile gut is the best gut to have because there is NO "biosis" at all.
I can relate to your symptoms because I had almost exactly what you describe early this year. I would start to tremor after I had eaten a certain amount of food and given my family history I thought it was my pancreas.
Six months later my gallbladder came out. I felt transiently "better",but I was still and continue to be sick.
I think the real issue is nerve damage from Lyme. Gastroparesis coupled with esophageal problems, also nerve related. Potentially "Bell's Palsy of the gut", which is a manifestation of Lyme.
I think my pancreas is fine for the moment. I trust the CT and the MRI. If there was *anything* weird happening those two things they would have found it. I feel like your results are generally the same as mine.
If I were you, I would start focusing on the vagus nerve and what happens when you manipulate nerve function. If you have gastroparesis ( often missed) then a drug called pyridostigmine could help. It is OTC in Europe and enhances nerve function by inhibiting the breakdown of acetylcholine, which is the neurologic transmitter that makes nerves fire.
You should get an upper and lower GI. Get scoped, if you haven't.
If there are no problems with your upper and lower digestive functions, nothing on abdominal CT or MRI, then it has to be a nerve function problem -- gastroparesis.
They can also test for that and gauge the rate of gastric emptying .
In the meantime, quit the kefir. Probiotic replacement is an immensely inexact kind of treatment.
Posted by Clint31 (Member # 16420) on :
Good advices! What do I do to treat my yeast in the meantime? My doctor has not addressed the yeast at all
Posted by Marnie (Member # 773) on :
Medication vacation.
Posted by didogs (Member # 40101) on :
Hi After gall bladder removal for me I continued to have that same pain you describe. I ended up being worked up for sphincter of oddi dysfunction. This may be worth speaking to your GI about. For me, after aggressively treating lyme and bart-my stomach/GI issues went away.
You will find your answer and get better
Posted by WorkNHope (Member # 8984) on :
I've have pancreatitis for years after several years of antibiotics. Doctor says many Aids patients get pancreatitis because of the heavy antibiotics. Even Mepron can cause pancreatitis.
After pancreatitis startd, I developed diabetes for a few years. But then I stopped abx, both prescription and herbal ones, for 8 months. I was delighted to see diabetes was gone. But pancreatitis is still there. Fortunately, my pancreatitis is not very painful.
The only defense I know against pancreatitis is pancreatic enzyme.
Posted by Clint31 (Member # 16420) on :
Just an update; my doctor pulled me off antibiotics.
When I have one of these flares; it is always the same thing. I get some strange heart palpitations, my stools float, my pancreas feels inflamed, I get nauseated constantly and after every meal, I feel like there's a lump in my throat, I feel sicker than any herx or anything I've had in my life.
He wouldn't actually say I have pancreatitis. He took my liver enzymes and my pancreatic enzymes via bloodwork. I honestly wouldn't be shocked if someone said I was dying.
Posted by Clint31 (Member # 16420) on :
I also have air hunger, anxiety type feelings; which is all connected somehow. I don't know what causes this but I know it is all connected at the root in cause.
I seem to also drop weight quickly during these bouts and get shooting pains in the area of the pancreas. I will take lyme and babesia for the rest of my life if this stuff just goes away.
[ 12-23-2015, 01:28 AM: Message edited by: Clint31 ]
Posted by randibear (Member # 11290) on :
what about gerd? reflux.... have you tried prilosec?
Posted by Clint31 (Member # 16420) on :
Prilosec makes my liver scream! Instantly almost
Ok update. My liver enzymes have been cut in half! Good news there. AST 40 ALT 80 (ALT down from 170).
However: my pancreas lipase is 68, normal range 7-60. My doctor didn't give directive on that. Said to his staff member he isn't concerned
Posted by randibear (Member # 11290) on :
is he a gastro or llmd? you really need a specialist.
Posted by Lymetoo (Member # 743) on :
Sounds good .. what did you change, if anything?
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by randibear: is he a gastro or llmd? you really need a specialist.
He's an LLMD. Also internal medicine. Said he sees pancreatitis; but that I don't have it due to my testing of MRI/CT Scan not revealing it. Said that there was a detection of lyme in my pancreas and that treating the lyme should cure it. FWIW.
[ 12-28-2015, 06:46 PM: Message edited by: Clint31 ]
Posted by Clint31 (Member # 16420) on :
quote:Originally posted by Lymetoo: Sounds good .. what did you change, if anything?
Stopped taking antibiotics.
Started on colloidal silver, teasel and oregano and heavy vitamins.
I am also going to stop taking the norco as I think it irritates it also