posted
Looking to speak to anyone here who has had issues. I thought this was liver pain but after months of thinking it was the point of my liver hurting up in the Left hand side of my back and on the left side,
I am starting to realize this sensation that is getting worse and more profound is not my liver but my pancreas.
I have never felt worse in my life. Not just dealing with Lyme and babesia treatment but this has gotten worse to where I think I have chronic pancreatitis.
When I get up in the morning, it feels like something is swollen and sticks to my back when I first sit up.
Then all day long I feel a static like feeling in my upper left back, almost like when your hand or foot falls asleep, I feel those pins and needles where my pancreas is.
I am scared that I am dying because of this, and don't understand why at age 32 I would have it. I guess I am hoping for someone to talk to about it. I have seen through the search function here that pancreas issues happen to lyme folks.
God bless and thanks
(breaking up the post for easier reading for many here)
posted
It's 1000% my pancreas, just looking at pictures on google images where the sensations are in my back left side and the flank pain I've been having.
Thing that has me so scared is it isnt like its been a 4 day thing. This has been going on literally since like May and getting worse.
I'm afraid. Had bloodwork done today but I am scared that it will not show anything for my LLMD to try and help me or that my LLMD is not proficient at handling pancreatic stuff
posted
Any doctor should be able to tell if that is what it is.
Even blood work should show it.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
Chronic pancreatitis can be very difficult to diagnose as the blood tests come back normal after the initial acute onset.
An Abdominal ultrasound might be helpful in seeing if any of the ducts are blocked or inflamed, or if there is enlargement of any of your major abdominal organs (liver, spleen, kidneys, pancreas, etc.).
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Most people do NOT die from pancreatitis.
My mom got a severe bout of pancreatitis about a month after she had surgery to remove half of her pancreas due to pancreatic cancer.
Now, her doctors were concerned that the additional stress of the inflammation of the pancreas might kill what little of the functioning organ that she had left. They were also worried that that might cause multiple organ failure and therefore my mom's untimely death.
But, she also had a large pseudocyst on the end of her pancreas where the surgery was performed. And pancreatic fluid was leaking out into her abdominal cavity causing extreme pain and inflammation in that whole area.
They had to surgically place a drain to help remove the fluids. Gave her IV fluids to hydrate. Gave IV antibiotics and NSAIDS for a while. It was all watch and wait.
Took about a month to recover. She got the drain pulled after about 6weeks. Pain probably went away after about 2months.
Sooo... LONG story short. If she can survive pancreatitis right after surgery for pancreatic cancer with only half a pancreas that is unhealed, then your odds of survival for a standard case of pancreatitis are very very good!!!
Try not to worry until you get your lab results and imaging reports back. Then your doctor can discuss with you what is truly going on to cause all your pain and symptoms.
Posts: 5237 | From here | Registered: Nov 2007
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quote:Originally posted by Lymetoo: Any doctor should be able to tell if that is what it is.
Even blood work should show it.
Actually, you're wrong. It doesn't show anything but early or acute pancreatitis, which I've had for probably 3-4 months based on when I started having symptoms. Meaning my amylase & lipase are likely to read normal. It is as misdiagnosed and hard to get a diagnosis as Lyme.
sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
MRCP is a newer test MRI based test that can clearly see all areas of the pancreas and gallbladder (including ducts).
I recently had this done because of pain in pancreas area and high pancreatic enzymes. All checked out good during the test so we are thinking that I might have had some transient inflammation due to a viral illness.
I liked that it was a clear non- invasive way to look at these internal organs.
Hope that you get the right tests to figure out what is causing your symptoms so that you can feel better soon!
Posts: 5237 | From here | Registered: Nov 2007
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posted
Thank you for the post. This is assuming I am not a chronic case, correct? I am pretty sure I am based upon when I began to have the symptoms.
How would I not also have multiple organ failure if my body is compensating for a failing pancreas since May. That's when it started really hurting
quote:Originally posted by sammy: Most people do NOT die from pancreatitis.
My mom got a severe bout of pancreatitis about a month after she had surgery to remove half of her pancreas due to pancreatic cancer.
Now, her doctors were concerned that the additional stress of the inflammation of the pancreas might kill what little of the functioning organ that she had left. They were also worried that that might cause multiple organ failure and therefore my mom's untimely death.
But, she also had a large pseudocyst on the end of her pancreas where the surgery was performed. And pancreatic fluid was leaking out into her abdominal cavity causing extreme pain and inflammation in that whole area.
They had to surgically place a drain to help remove the fluids. Gave her IV fluids to hydrate. Gave IV antibiotics and NSAIDS for a while. It was all watch and wait.
Took about a month to recover. She got the drain pulled after about 6weeks. Pain probably went away after about 2months.
Sooo... LONG story short. If she can survive pancreatitis right after surgery for pancreatic cancer with only half a pancreas that is unhealed, then your odds of survival for a standard case of pancreatitis are very very good!!!
Try not to worry until you get your lab results and imaging reports back. Then your doctor can discuss with you what is truly going on to cause all your pain and symptoms.
posted
I hope sammy will come back to help you. I have a friend whose teen-age daughter ends up in the hospital about every six months for pancreatitis. She becomes horribly ill and in incredible pain.
They often have to put her on a feeding tube just to get her through the attacks. This has been going on for years. It is quite possible to have chronic pancreatitis and continue to function, but at some point it will become very obvious if you actually have it. No doctor would be able to deny it.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
Would the lipase and alp numbers show high in bloodwork if this is something I've been dealing with since May? Meaning that it's more chronic then acute? My greatest concern is that
sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
From what I understand, Chronic Pancreatitis persists for several years befor it is diagnosed.
It typically causes severe immobilizing pain, especially after eating, so much so that people often stop eating. It also causes diarrhea (a certain type called steatorrhea) and weight loss.
There are specific tests that can detect Chronic Pacreatitis. Your doctor will be aware of these but if you are concerned, it might be best to get a referral to see a gastroenterologist.
You will need lots of labs including your pancreatic enzymes. In acute pancreatitis the levels will be high. In chronic cases, they will still be mildly elevated. Only the most extremely late cases where the pancreas has suffered atrophy and fibrosis will the levels appear normal to low.
That is why you cannot diagnose bases on labs alone when you have symptoms!
You May also choose to have an MRCP (MRI based test) or an ERCP (endoscopy type test) both of these tests are used to directly closely at the pancreas and gallbladder.
Benifits of ERCP is that the physician can do procedures like remove stones from ducts and place stents when needed. MRCP only allows for visualization.
EUS is a type of ultrasound that can also be used to visualize the pancreas and gallbladder area too. This is done through an extended endoscopy.
So basically you need to find out if you have pancreatitis and why, what is causing it. When you know why, that is how they will treat you.
If you have a stone blocking a duct, they remove it. If you have a narrow duct, they open it. Whatever is going on, they will discuss your options so that you can make an informed decision.
Posts: 5237 | From here | Registered: Nov 2007
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Clint, my mom's pain started around her upper abdomen, towards the left side and radiated to her back.
Within an hour it spread up her chest and made it hard to breathe. By about 90 min her whole abdomen was distended an hard. Thankfully we were in the ER by that time.
Your pain presentation may be different than my moms but it is very real. Something is causing your pain.
Get your tests done so that you can find out what is going on and treat appropriately. That way you can feel better faster and stop wondering.
Posts: 5237 | From here | Registered: Nov 2007
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posted
Just don't want it to be cancer... I am only 32, and my daughter is only 10 months. That's all I keep thinking about. Thanks Sammy these are very good informational posts.
posted
My blood work came back. My lipase was 89. My alt was 169. And my ALT was also like tripled normal range. Am I dying, doctor said he wanted to see me immediately and said it could be something bad but there's more testing that needs done
sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
ALT is specific to your liver. Your level is only moderately elevated. This can be due to viral illnesses, medications, and even due to a stone obstructing a bile duct. There are many causes that your doctor will have to figure out.
Hang in there. Your doctor wants to see you and will then order further tests to find out what's going on.
Posts: 5237 | From here | Registered: Nov 2007
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posted
I was on an anti malarial drug for 2 months that I just stopped this week called Mebendazole for Babesia treatment. He seemed to think that it could have been the reason for the jump in my liver enzymes.
My ALT and enzymes have never been higher than the 60's, so I am pretty freaked out to say the least.
He did bloodwork to rule out pancreatic cancer, colon cancer, and another type. He wants me to have an MRI on my pancreas to hopefully see if it is pancreatitis.
quote:Originally posted by sammy: ALT is specific to your liver. Your level is only moderately elevated. This can be due to viral illnesses, medications, and even due to a stone obstructing a bile duct. There are many causes that your doctor will have to figure out.
Hang in there. Your doctor wants to see you and will then order further tests to find out what's going on.
Is an ALT of 169 the highest anyone here has ever heard of
posted
No, not at all. I had a friend whose ALT was over 700. He thinks it was due to drinking energy drinks. Once he stopped them, all went back to normal.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
Man I am feeling really rotten tonight. For some reason the only thing that gets me through is taking a hot bath... I feel so nauseated and I think I have pancreatitis, in between chronic and acute phase really....
The doctor has indicated that they found lyme (bb) in my gallbladder through the meridian workup he provides. I dont want to have my gallbladder removed.
Next week they'll MRI my pancreas and gallbladder. I don't know if I'm going to make it until then. My wife thinks I'm losing my mind. I am worrying my mother sick.
What in the world did I do to ask for this; I know no one deserves these things and there are worse hands people are dealt. But this is just unbelievable to me..
To have pancreatitis, babesia, lyme, epstein barr, fatty liver.... I am a 32 year old man just trying to raise his child and make a good life for her and my wife.
Sometimes I just think it would be better off If I did pass in my sleep because I can't get out of this ever.
I am going to ruin my family through these maladies and the money it costs trying to solve them. I have suffered like an animal. it is getting worse.
(breaking up the post for easier reading for many here)
sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
If you are truly that sick, maybe you should consider going to the ER.
Why wait and suffer and worry? (This is surely causing your family to worry too right?)
The ER has their own MRI and can do their own scans with almost no to minimal wait.
The ER is where my mom was diagnosed because the pain hit her like a ton of bricks and immobilized her, in less than 1hr her abdomen was so swollen and distended that she started having trouble breathing...
I certainly understand that it is beyond scary to go to the ER but sometimes our health demands urgent attention.
It sounds like getting a thorough evaluation with current labs and some targeted diagnostic tests would go far in helping you feel better. You should finally be able to find out what is truly causing your alarming symptoms.
You just sound so miserable and worried (which is completely understandable). Please consider going to the ER for evaluation and treatment.
Posts: 5237 | From here | Registered: Nov 2007
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posted
Thing is, there's some left abdominal pain, but it's more nausea, general malaise, and a feeling of air hunger that it's difficult to breathe that are bothering me. The pain isn't unbearable but this has been going on months in relationship to my pancreas and gallbladder. I just don't know what to do.
I had only a smoothie for lunch simply so I could take my antibiotics and supplements. Not sure if the flagyl and combo I am on are making me herx or this is my organs trying to fail bc my pancreas is bad.
posted
I think you are being disabled by fear. Just hang on. You are making the appropriate moves and you will be getting the MRI soon, right?
If your pain is off the charts, by all means go to the ER. If not, just hang on. Your organs are not failing. Your doctor would know this by your bloodwork.
I've had the MRI for the pancreas as well as the ERCP .. you are going to be OK.
I'm glad you mentioned the flagyl .. believe me, this stuff will make you SO DEPRESSED and fearful that I'd be willing to bet it is a major factor here. I can no longer tolerate flagyl myself.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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quote:Originally posted by Lymetoo: I think you are being disabled by fear. Just hang on. You are making the appropriate moves and you will be getting the MRI soon, right?
If your pain is off the charts, by all means go to the ER. If not, just hang on. Your organs are not failing. Your doctor would know this by your bloodwork.
I've had the MRI for the pancreas as well as the ERCP .. you are going to be OK.
I'm glad you mentioned the flagyl .. believe me, this stuff will make you SO DEPRESSED and fearful that I'd be willing to bet it is a major factor here. I can no longer tolerate flagyl myself.
Thanks Lymetoo. Hoping we can get the MRI tuesday. I can feel my pancreas in my back its like, dead. Feels like a limb feels when a limb falls asleep back there.
And I start reading on the internet about the complication of pancreatitis thats left alone, and I've been basically ignoring this issue thinking its just babesia enlarging my organs or something since May when I first felt the pain. Stupid on my part.
In all fairness I did tell my doctor I had pain back there, he tested me for a kidney infection and sent me on my way.
I really appreciate the support here and people just listening and being there. Bless you all.
(breaking up the post for easier reading for many here)
posted
Just an update on this. Ended up in the ER tonight. Very bad nausea and pain in the pancreas area, and irregular heartbeat.
My lipase has been elevated for 3 years they told me, hovering around 70... Tonight it was at its highest of 96 but they discharged me and said to follow up with a specialist.
The MRI I had suggested gallbladder sludge, I am hoping this caused something in between acute and chronic. I do not want chronic pancreatitis.
They said on the MRI that my pancreas looked structurally ok. But I feel the pain and sensation back there and my Lipase is still elevated and going up.
Is there any hope for me possibly if I get my galbladder removed?
(breaking up the post for easier reading for many here)
posted
updating this thread for reference. My Lipase is now 215, gallbladder was removed october 2015. Now have same pain in left back (burning/hot sensation).
If this were cancer; would I be worse off now if it was a tumor in my pancreas?
Lipase and symptoms suggest it is definitely a pancreatic cause.
Praying for my babies sake who are my life that I get the chance to be their father. I am so scared.
(breaking this up for easier reading for many here)
posted
Agree with Sammy it would be easier to follow your situation on one thread. If you agree, you can click on Report Post to let us mods know and we can close one of the threads, with a statement about seeing the narrative on the other thread.
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