posted
I am scared beyond belief. I just need someone to talk to. I come here in hopes that I can have anyone to talk through this with.
I have a 1 month old son, and a 2 year old daughter that are my world. This is the reason for my deepest fears about my latest health issue.
Last spring, I had some weird symptoms in my back, and basically elevated lipase and pancreatitis symptoms so they removed my gallbladder.
I have learned that my lipase has been slightly elevated dating back years, and most recently it is over 200.
After removal of my gallbladder, the symptoms of my pancreas did not go away. My GP said finally its slight pancreatitis and sent me to a GI doc who said its not pancreatitis;
I told him I feared pancreatic cancer but he said "due to all factors, that would be the smallest part of the pie chart of possibilities". One of the factors he said against pancreatic cancer was my age (33).
I don't know if he's doing it to ease my fears, or he is lying to me and suspects pancreatic cancer, but he's doing an EUS (endoscopic ultrasound) thursday to figure out what is going on.
He said he thinks it could be 'fatty deposits' on my pancreas or fatty pancreas but just from the hours of reading I've done on the internet, that isnt going to be whats causing my problems.
I have some other problems that make me think this is pancreatic cancer. I have nausea. I have pain in my back which waxes and wanes, and I have some in my front left quadrant which could absolutely be my spleen being annoyed (I also have mono/epstein barr).
I have elevated liver function tests. I have watery diarrhea and floating stool. This all dates back the last 16 months, again the symptoms have waxed and waned but have been really bad since this june. I have NOT lost a ton of weight just a little.
My doctor did say that he believes lyme is in my pancreas and did a test that detected it in that meridian point in my pancreas, and doesn't know whether or not it could be the cause of my symptoms.
I just feel like the GI doc was not being honest to me and my wife but was trying to not freak us out while all the while suspecting pancreatic cancer or a tumor in my pancreas.
I don't know why else he would do the EUS as I did not ask for it, just told him my biggest fear in all this.
Is there anyone here I can talk through with this. I am so afraid, I am shaking sitting here. God bless you all my friends and thank you for whoever takes the time to read this.
(breaking up the post for easier reading for many here)
*I had an MRI and CT scan in August of 2015 that were clean of the pancreas but determined I needed to have gallbladder out because of "sludge".
*I have had two CA-19 tumor marker tests of the pancreas, one in August 2015 and one in August of 2016, both normal (but have read that these are basically useless in diagnosis) - not sure why my GP did these and made me pay a fortune for them if they are useless.
I do figure that these, coupled with my age are positive signs that give me a chance of not having pancreatic cancer. However it seems once you're on this road with your pancreas, there's just NOTHING else it could be that could cause these symptoms
*I also have extreme fatigue, but again that is in the last four weeks and could be attributed to a flare in my epstein barr or just freaking myself out; but it's definitley worse and I am scared its because its cancer and I have only a couple weeks to live.
*One thing my family and I told myself is the symptoms have been very similar I've been having for over a year now with this. If it WERE cancer I would be worse off by now....
well I've read today online that isn't necessarily the case; that it's not something that hits overnight
and steve jobs for instance may have had pancreatic cancer for 30 years before getting sick. Basically pancreatic cancer or tumor can be in existence for years...
now I dont know if this means without causing symptoms or the symptoms can be there for a while as it grows before you go downhill. You get my drift.
But the fact that this began last spring and has continued into now am I am still standing has disappeared as a source of my hope.
(breaking up the post for easier reading for many here)
susank
Frequent Contributor (1K+ posts)
Member # 22150
posted
I don't know anything about this - just wanted to reply. Please don't panic. Others that know something about this will write soon.
-------------------- Pos.Bb culture 2012 Labcorp - no bands ever Igenex - Neg. 4 times With overall bands: IGM 18,28,41,66 IND: 23-25,34,39 IGG 41,58 IND: 39 Bart H IGG 40 Posts: 1613 | From Texas | Registered: Aug 2009
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me
Frequent Contributor (1K+ posts)
Member # 45475
posted
Clint31, I am sorry you are going through this. Unfortunately, I don't know anything about this either, but I also wanted to respond and say we are here to listen and support you the best we can. Sending comforting thoughts your way.
-------------------- Just sharing my experiences, opinions, and what I've read and learned. Not medical advice. Posts: 1431 | From USA | Registered: Mar 2015
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posted
My opinion is the doctors should be doing any testing to shed any light on what's going on in your body. And you can't "think" those results - you need to get them.
So I'd suggest seeing if you can relax a little until they do this testing.
And since you're concerned about the pancreas, then to discuss any and all diagnostics for it. Plus there could be other stuff going on that they should do their tests for.
Ok, here are a couple links for you - if you're worried about dealing with cancer, these links here are notes I typed up of the two Ty Bollinger series on natural cures for cancer - this is 20 episodes.
Some of the people recovered from pancreatic cancer, so you can take your time and scroll through the info to find testimonies of those who successfully dealt with it.
This is also fabulous info for learning how to maximize as much anti-cancer lifestyle as possible, so we don't have to get it in the first place.
posted
Clint, I'm sorry that all of this is going on for you. You need to get your health back so that you can enjoy your wonderful family. There are great people on this site who will be of immeasurable help to you.
I'll just tell you some things I've discovered though everyone is a little different and what works for me may or may not work for someone else. I treat myself like a guinea pig - I try out a lot of remedies.
Something I just discovered is that Babesia moves into your red blood cells and destroys them and eats your Magnesium (leg cramps) AND Iron (diarrhea). I had GI issues for over a year - especially diarrhea. I began, recently, to take iron even though I didn't test as having anemia at my physical last year.
At first I took 1 Nature Made iron tablet every morning - didn't like Spring Valley as it caused explosive poop (at least for me) something no one needs! 😬)
Unbelievable! My diarrhea disappeared almost overnight. I now take an iron tablet every other day and soon, will take one tablet every 3 days and then 1 a week because I'm increasing my Babesia herbs and, hopefully, will have fewer Babesia problems. Lack of iron was causing my diarrhea.
I also have had excessive thirst - dehydration caused me to have lower back pain. The dehydration was depleting my potassium. Lymies have dehydration and need to drink a lot of water. 😖
As first aid for lower back pain, I take 1 Potassium tablet and the pain goes away in minutes! Now, I take 1 Mega Hydrate in the morning and 1 at night (Amazon) so that I absorb more of the water I drink and lose less Potassium .
I hope these tips will help you. Any time you have a strange symptom, please feel free to pm me - I have had every pain and discomfort that Lyme can give a person
and have found a successful supplement or herb or homeopathic after much experimentation and will be glad to share with you my experiences. Hang in there and don't let it discourage you.
This Lyme site has amazing, resourceful people on it, many of whom have gotten cured by modern medicine or cured themselves, who are now reaching out to help others.
You mentioned pancreatitis. I don't know what that is but I always tested with High Glucose until I discovered Ceylon Cinnamon (Amazon). Now if I overindulge in sweets,
I take 1 Swanson Ceylon Cinnamon and have normal Glucose Readings as a result. Ordinary OTC Cinnamon can be used but you run a risk of damage to either the kidneys or liver - I forget which.
The reason why I use supplements, herbs and homeopathics is that the body recognizes them and gratefully respond. Herbs are not caustic or extreme and can reach into the body and become one with it
and sometimes cause miraculous improvements to all of the myriad diseases and ailments that Lyme and Co give us. Good luck. It's morning now and you'll get lots of help soon.
Best wishes.
Posts: 653 | From Northern Virginia | Registered: Oct 2014
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hiker53
Frequent Contributor (5K+ posts)
Member # 6046
posted
Clint,
I understand it is hard not to worry. I will pray that the Lord eases your mind.
The MD may be doing the test to "cover his butt."
Hang in there.
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8885 | From Illinois | Registered: Aug 2004
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bluelyme
Frequent Contributor (1K+ posts)
Member # 47170
posted
Prayers for you clint ...i have heard about that mega hydrate that tulips recommended ..i have heard of people coming back from stage 4 with rife .
..plasma rife ..use enzymes now to digest ..also watch the ted talks with anthony holland maybe will givebyou hope for plasma bulb machine
-------------------- Blue Posts: 1539 | From southwest | Registered: Dec 2015
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Hey Clint,
Take a deep breath, try to relax some...
I remember your post from before.
Your lipase running around 200 is still not considered "high" to GI specialists that treat the pancreas.
With pancreatitis and chronic conditions like cancer, your enzymes are more likely to run in the hundreds of thousands. So much, much, much higher.
I've had to learn about these diseases first hand. I've had acute pancreatitis. So has my mom.
My mom also has pancreatic neuro endocrine cancer. (Same as Steve Jobs).
She was diagnosed with her cancer when they found it "incidentally" on a CT scan of the Chest & Abdomen. They did the CT scan because she went to the ER due to pulmonary embolisms.
We soon learned that blood clots & pulmonary embolisms are caused by the tumor load with pancreatic cancer. It is called: Trousseau's sign.
She had an extensive work-up, including an ERCP (similar to EUS but more invasive), endoscopy, colonoscopy, MRI, bone scan, and Octreotide scan, etc...
There were also a whole ton of specialized labs that were drawn to show the levels of cancer activity and it's type in her body.
All of those test results were put together to diagnose her cancer.
She had surgery 2 years ago to remove the tail end of the pancreas , the spleen, and some lymph nodes. Recovery was long but she was strong.
This summer her symptoms came back... Right after, her routine blood tests came back with elevated levels, and her routine CT scans revealed that some new tumors had grown.
Clint, I don't tell you all this to scare you. I tell you to open you eyes.
Yes, you feel like something is wrong, the doctors should fully evaluate you to rule out a whole miriad of conditions. Don't focus on just pancreatic cancer as you may miss your true diagnosis and opportunity for treatment and wellness?
With your symptoms being colicky mild back pain, watery diarrhea, elevated liver enzymes, and some nausea, there are many possible causes. Keep an open mind.
It may take awhile to find the right diagnosis but in time, with the right tests, and the right doctor with much experience, you will get there.
Posts: 5237 | From here | Registered: Nov 2007
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Also, stop reading / searching the Internet for awhile. (Except LN!)
Sounds like it is overwhelming you and causing too much stress. At this point, it is not being helpful.
You can diagnose yourself with almost anything if you look for it!
Of course, we are/ will be here for you. Hang in there.
Posts: 5237 | From here | Registered: Nov 2007
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posted
Thank you Sammy... when you say open your eyes are you telling me to open them because I shouldn't worry based on what I am presenting (I am hoping that is what you mean).
If you wouldn't mind I would like to talk to you more within the thread or via PM about this. Please reply when you see this. Thank you for your post. You are knowledgable, and I feel a great person. Very good to talk to and you have calmed me ever so slightly tonight as I sit here with my stomach in nots. Bless you for that.
posted
Sammy; is it almost always that the lipase (my amylase is normal) is elevated higher than mine at 218 in pancreatic cancer? This is the hope I am clinging to right now.
Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
My mom died of pancreatic cancer.
She had no symptoms *whatsoever* until one day she met up with some friends who pointed out that she looked jaundiced. She went to the hospital; she was diagnosed that night.
With Lyme and co I've had insane gastro issues, neverending and horrible; finally got my gallbladder out and they've looked at my pancreas seventeen times. I don't have pancreatic cancer.
I doubt you do either. There are a trillion things that can go wrong with the gastrointestinal tract far more often and with much more discomfort than pancreatic cancer.
Posts: 2057 | From Florida | Registered: Feb 2015
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quote:Originally posted by Jordana: My mom died of pancreatic cancer.
She had no symptoms *whatsoever* until one day she met up with some friends who pointed out that she looked jaundiced. She went to the hospital; she was diagnosed that night.
With Lyme and co I've had insane gastro issues, neverending and horrible; finally got my gallbladder out and they've looked at my pancreas seventeen times. I don't have pancreatic cancer.
I doubt you do either. There are a trillion things that can go wrong with the gastrointestinal tract far more often and with much more discomfort than pancreatic cancer.
I'm not yet jaundiced, and don't have weight loss. But those are the only two pancreatic cancer symptoms I don't have, I feel.
Has your pancreas area in back ever felt "hot" or like its burning? Nausea? Diarrhea (I am told the D could be from lack of having a gallbladder and its common for some folks who have it removed, even a year out).
Has your lipase ever been elevated as mine is, suggestive of pancreatic issue?
I also have elevated liver enzymes which are concerning to my GP and GI doc; however I have fatty liver which could cause that and also epstein barr.
I think all this pieced together really does suggest pancreatic cancer, and the fact the GI doc made the quick move to do an EUS of my pancreas makes me think he suspects it too but he said to me and my wife
"I think it's the smallest possibility in the pie chart if I was doing a pie chart it would be a tiny sliver". I feel like he was being dishonest with me for some reason
(breaking up the post for easier reading for many here)
posted
Sammy, because you're saying your mom's cancer symptoms returned, I also want to suggest to you to look through the two links I gave above to Clint31, which are the notes to the two Ty Bollinger series on natural cures for cancer.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
So sorry Clint. I have had HORRIBLE GI issues with Lyme. It was one of my first symptoms. They took my gallbladder out. Made it worse. 3 years later, I was finally diagnosed with Lyme.
Lyme goes all through the body and does weird and scary things to our bodies and minds.
Have you been diagnosed with lyme? Have you seen a LLMD?
Keep moving forward with testing. Try to take it one step at a time. I KNOW that is easier said than done, because that's what people tell me and it's hard to do.
Keep us posted.
Posts: 798 | From Cincinnati, OH | Registered: Jul 2016
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posted
Clint-you are in my prayers.
Posts: 88 | From new england | Registered: Oct 2016
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Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
Clint, your symptoms suggest any number of GI conditions. i agree with your doc about the small sliver. Even if you have some kind of pancreatic irritation, there are people who go for years with chronic/subacute pancreatitis and all flavors of misery with it and do not ever get pancreatic cancer.
It is *incredibly* rare.
If it were me I would be looking into parasite testing. I bet you have some kind of opportunistic amoeba or parasite. Something like a blasto or entamoeba can be ruinous.
But still not pancreatic cancer.
Posts: 2057 | From Florida | Registered: Feb 2015
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posted
Thank you to all for the friendship, prayers, and replies.
It provides me with hope and someone to talk to.
So even if this remarkably mimics pancreatic cancer symptoms every step of the way, it is still possible to be something else?
I am just trying to garner hope.
Today for instance I have not eaten, had nausea, have heartburn from something I ate last night, and have had a yellowish tint golden type bowell movement followed by bile D the next time. Now the D the GI doc says could be from lack of a gallbladder. But it has not always done this since I had surgery to remove it in October 2015. Just the last few months (and before it came out it did this but not as badly).
I also have some liver pain today.
Basically I am just asking..... Can something perfectly mimic pancreatic cancer and NOT be pancreatic cancer somehow?
Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
I really don't know where you've gotten information about the specific behavior of pancreatic cancer. The symptoms tend to be silent until there is jaundice and then if not caught, unbearable, indescribable, morphine level pain.
These other symptoms, such as variable bowel distress can sometimes accompany pancreatic cancer but they are NOT symptoms.
What you're describing actually is about the same thing that happened to me when I had my gallbladder out and did not take my medication for four days. I went back to taking my colestipol and it cleared right up.
Posts: 2057 | From Florida | Registered: Feb 2015
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quote:Originally posted by Jordana: I really don't know where you've gotten information about the specific behavior of pancreatic cancer. The symptoms tend to be silent until there is jaundice and then if not caught, unbearable, indescribable, morphine level pain.
These other symptoms, such as variable bowel distress can sometimes accompany pancreatic cancer but they are NOT symptoms.
What you're describing actually is about the same thing that happened to me when I had my gallbladder out and did not take my medication for four days. I went back to taking my colestipol and it cleared right up.
What about the other parts of the puzzle:
-high lipase -pain in the back pancreas area -indigestion -nausea (usually following eating) -elevated Liver function tests -gurgling in pancreas area left front (tail) whenever I eat anything -lack of appetite -left shoulder pain which coincides with the pancreas pain I have. -heartburn (I am not a person who gets it typically)
These are the things have me concerned with PC, I read on a lot of forums where people did have symptoms beforehand but your conversation with me and statement gives me a lot of hope.
I value your knowledge on this.
I am just hopeful that since these symptoms have presented 16 or so months ago that it is a good sign as I would be worse off by now then I am without treatment.
When you say they can accompany PC but aren't a symptom... Explain
posted
When I sit back on my couch, or in my car.... It almost feels like I can feel the tumor pushing in the organ in my back.
I can feel like a spot in my back that feels pronounced when I sit back, back left where the tail of the pancreas resides.
Is this possible? Is it possible to feel that sensation if the pancreas is simply irritated which mine is.
Sorry for all the questions. This is helping me to just speak about it and you are the best folks on earth when it comes to health related stuff. Bless you all
Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
You know, sometimes when we get sick we'll go out on the internet and find the thing that sounds closest to what we have; and because we personally feel so rotten we assume we're totally right about this horrible dx.
If you had a tumor on your pancreas you could "feel" you would be so sick you wouldn't be typing anything right now.
Chronic pancreatitis can be miserable but it is not fatal. Chronic babesia can effect any organ through reduced blood flow.
You obviously have some gastro issues and I'm glad you're getting an ultrasound but when it's negative I'd get some parasite testing done, drink rooibos tea ( for the pancreas), take some digestive enzymes and do a trial of colestipol.
(breaking up a paragraph for easier reading for many here)
quote:Originally posted by Jordana: You know, sometimes when we get sick we'll go out on the internet and find the thing that sounds closest to what we have;
and because we personally feel so rotten we assume we're totally right about this horrible dx.
If you had a tumor on your pancreas you could "feel" you would be so sick you wouldn't be typing anything right now.
Chronic pancreatitis can be miserable but it is not fatal. Chronic babesia can effect any organ through reduced blood flow.
You obviously have some gastro issues and I'm glad you're getting an ultrasound but when it's negative I'd get some parasite testing done, drink rooibos tea ( for the pancreas), take some digestive enzymes and do a trial of colestipol.
So you truly dont believe what I am presenting with is indicative of PC or anything fatal?
I am sorry to ask this, I am just scared. It is ok to be honest with me also, if you do.
Thank you so much for your time in this and sharing past personal experiences which I am sorry you had to go through with your mother.
(breaking up text for easier reading for many here)
posted
I would say your doctor is being thorough. He is making sure that IF by some wild chance, this is cancer, then he will not have overlooked it.
He does not sound like he thinks you have it .. not by what you said.
I agree that if you felt the tumor, you would be extremely ill.
Do whatever you can naturally until a doctor can figure out what is going on. Even seeing a naturopath would be a good idea.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
Nope, I do not.
My mom was 79 when she died. She had a great life and while she suffered with PC she was also able to live three years full of family and friends with the diagnosis. She had pain a total of 3 and a half days before she died.
You are 33. You don't have this, ok?
Posts: 2057 | From Florida | Registered: Feb 2015
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Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
Yes it's true. My mom talked about it and said she'd had that pain under her RIGHT shoulder for a couple years before dx.
Often any symptoms are vague, mild, and completely nonspecific.
I'm not being positive. I am sure you don't have it.
Esophagitis, a sphincter malfunction, costochondroitis, trapped gallstone in the bile duct after surgery. sphincter of oddi dysfunction, IBS (infectious), MILD pancreatitis ( severe would hospitalize you),
gastroparesis or other motility disorder, hepatitis a, b and c, and of course lyme, babesia, ehrlichia or bartonella would all be more statistically likely than pancreatic cancer. Oh, I forgot H. Pylori.
(breaking up a paragraph for easier reading for many here)
posted
At this link; people seem to have all the same symptoms of me and it was PC.... I can't sleep. I am so freakin scared still my friends. All I can think about is my 1 month old and my 2 year old.
posted
clint31. I feel as Jordana. There are SO many other options. Let us know when you find out.
Posts: 798 | From Cincinnati, OH | Registered: Jul 2016
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Jordana
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Member # 45305
posted
Just want to let everyone know that Clint wrote to me a week or so ago and said his ultrasound was negative for cancer.
Posts: 2057 | From Florida | Registered: Feb 2015
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posted
Yes I did not have a tumor/cancer. They said it was fat infiltration of the pancreas, and so that's what makes it feel or get inflamed and hurt. Praise the Lord on this.
I still am not quite out of the woods in my mind - as I also have fatty liver and that has been hurting for a long while with elevated liver enzymes. I get several day spells where I am very itchy all over So I am worried it is cirrhosis.
My GI doc took some tests and said he thinks that my elevated enzymes are due to fatty liver. I didn't tell him about the itching (it's different than anything I've ever experienced sensation wise) but I also wonder if it's from having Lyme/treatment for so long/and chronic Epstein Barr and or mono that is still active. I read mono can fire up the liver.
My LLMD pulled me off all ABX and anything liver toxic and said we will re check labs in 2 months. But my liver still feels swollen and irritated and now that itching sensation I get all over and it's almost like a pain point before it starts to itch. It is one of the oddest things I've ever experienced. Really worried about liver failure still. Feel like I still can't win.
sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
I'm glad to hear that you are getting your answers (slowly yes but still...) and that your doctors are continuing to follow up on your remaining symptoms and concerns.
One thought, if you ever feel like you forgot to tell the doctor something important during your appointment, remember that you can always call or email a message to the nurse. That way you don't have to worry excessively about it.
Then the doctor will have a chance to run extra tests if needed. They will be able to better help you.
Hang in there friend.
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