Pancreas Damage, Exocrine Pancreatic Insufficiency (EPI) and Chronic Fatigue Syndrome (CFS)

BeADocToGoTo1

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Hi Sundancer,

Thank you for the video link! It 100% overlaps my personal ME/CFS journey. I am going to reach out to Chris Armstrong with my findings in the hope that it provides more ammunition in the fight.

For years I have been boring anyone I know to tears with the importance of metabolite urine tests that should really be done by primary care physicians or family practice doctors as a standard check-up. I am hopeful that one day our toilets will perform metabolite urine and stool test as a normal daily process. Talk about helping prevent issues many years earlier!!!

The metabolite tests I did saved my life and pointed to:

- Pancreatic enzyme issues
- Small intestinal bacterial overgrowth (SIBO)
- Candida yeast overgrowth
- Mitochondrial issues
- Malabsorption issues
- etc.

SCFA (short chain fatty acids) that he mentioned in the video were also an excellent marker that was completely off in my initial comprehensive stool test, and was resolved after all the steps I had taken.
 
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BeADocToGoTo1

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This is from another thread, but I thought it would be helpful to add in this section...

Was there any specific intervention that you think created this large improvement? Would you say you are now moderate or mild?
So how did you heal yourself ? I know I have candida and leaky gut issues so that probably is reducing my absorption by a lot . When I took blood work I had depleted zinc ,copper and magnesium and iron was overloaded . So I know I have all these sorts of damage in my body from these nutrients . Im a complete mess I feel like I’m gonna be wheelchair bound very soon . I don’t feel like they get absorbed that well . I’ve been taking magnesium in high doses for around 2 years and the level is still the same . So I don’t think my body is accepting magnesium. How do you get the body to accept vitamins and minerals again ?
Let me start by saying that everyone's situation is going to different, and everyone's bodily requirements are going to vary, even over time. How you ended up here might have very different root causes than my situation, and how your body reacts to treatments can be completely different. My exposure to toxins, viruses, bacteria, or just plain luck of the draw with genetic make up might be very different to yours. There is no specific intervention that helped, but rather a combination of actions. Now, many actions to help rebalance the body are transferable and are at least something to try and look into as we are all bound by biochemistry. That is why I am sharing my experiences here, in the hope that it can light some bulbs for others. So in very rough terms, these are some of areas I tackled:

1. Removing any bodily insults I had control over in order to lower oxidative stress, inflammation, and the toxic load strain to the body. Help the body rebalance and heal is the goal. This includes things like air quality in the house (e.g. particles, mold, fumes and chemicals), water quality both for drinking and bathing (living in the US this was a shocker), food quality, chemicals in the house and on the skin, pesticides, herbicides, antibiotics through food (e.g. glyphosate is an antimicrobial), plastics exposure in the house through e.g. cooking wares, water boilers, storage containers. Of course, alcohol, smoking and hard drugs are a no brainer. But I even did some more controversial ones like check the house for large EMF fields and I sleep with the A/C breaker turned off in the bedroom.

2. Analyzing and correcting nutrient deficiencies.

3. Pancreatic Enzyme Replacement Therapy (PERT) to be able break down food into useable nutrients.

4. Medical testing for pancreatic damage and any related downstream health effects.

5. Strict food and water intake quality analysis and adherence. Immensely important step! Many elements were completely surprising to me during my research and recovery, as I always thought I ate and lived healthily. Restaurant food when you are this ill is better to be avoided due to the ingredients used.

6. Supplementation to resolve deficiencies in vitamins, minerals, phytonutrients, amino acids and fatty acids.

7. Tackling microbiome dysbiosis through medical testing, food, water, medicine and supplements.

8. Testing and re-balancing Small Intestinal Bacterial Overgrowth (SIBO) and Candida yeast overgrowth. Both of these also hinder nutrient absorption and production, impact auto immune reactions, increase food sensitivities, and increase the toxic load on the body.

9. Silent or acid reflux resolution, as this is a big signal from your body on food and water quality intake, as well as microbiome dysbiosis. The potential for further damage impact and malabsorption is not trivial. This signal should not be ignored nor constantly suppressed by the common antacids and PPIs.

10. Rebalancing neurotransmitters through nutrient support, food and water quality. Much of it can be caused by nutrient deficiencies and microbiome dysbiosis, but there is also a mental element of being chronically ill that needs addressing, both of which can get you into a vicious cycle.

11. Other primal healing elements to help support the body in its healing process, for example, meditation, sauna, mineral baths, sleep hygiene, etc.
 
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grapes

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Hi. I'm confused. Are we supposed to see anything by clicking on Steps I Took To Get My Life Back?? Because it doesn't "click" or go to anything. Same with Pancreas Background.
 

BeADocToGoTo1

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Hi. I'm confused. Are we supposed to see anything by clicking on Steps I Took To Get My Life Back?? Because it doesn't "click" or go to anything. Same with Pancreas Background.
Hi grapes,

Sorry for the confusion. Have you had any tests done to see whether you have any malabsorption or pancreatic enzyme issues. Not absorbing food properly caused similar symptoms as you described. I was not breaking down my protein intake, as an example, thus deficient in amino acids, which caused me to crash hard.

You can get amino acid supplements which are easier to absorb (do not require pancreatic enzymes), or a vegan organic protein powder to get a little extra boost of amino acids to see whether that will help.

Since you have already done an OAT test, they will usually provide you with some info on overgrowth of bacteria and yeast, and an indication of amino acid deficiencies. Hopefully you already tackled SIBO and Candida yeast imbalance if there was any. Were there any notes on pancreatic enzymes in the report?

Other tests to consider if you have not already looked at exocrine pancreatic insufficiency (EPI) are:

1. Genova Diagnostics - FMV - Gives a great overall picture of nutrient deficiencies, microbiome dysbiosis, pancreatic enzyme issues, and many more. Biochemistry and metabolomics in practice. This test should be standard for all primary care and family practice doctors as a regular preventative maintenance test, and for anything chronic or hard to diagnose. Great Plains Laboratories has similar tests. These might be the ones you have already done, as you mentioned OAT.

2. Genova Diagnostics - Comprehensive Digestive Stool Analysis 2.0 with Parasitology (microbiome dysbiosis indicators), Fecal Fat Distribution (checks if you have issues with different types of fat intake and digestion), Elastase (for EPI, pancreas enzyme marker)and Chymotrypsin (for EPI, pancreas enzyme marker). Doctor's Data has similar tests.

3. 24 hour fecal fat test - Simple, cheap and tests if you are breaking down fat properly, which can indicate pancreas dysfunction.

4. MRI MRCP with contrast - Gives a great picture of pancreas and ducts, gallbladder and ducts, liver, stomach, intestines.
 

grapes

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Hi grapes,

Sorry for the confusion. Have you had any tests done to see whether you have any malabsorption or pancreatic enzyme issues. Not absorbing food properly caused similar symptoms as you described. I was not breaking down my protein intake, as an example, thus deficient in amino acids, which caused me to crash hard.

You can get amino acid supplements which are easier to absorb (do not require pancreatic enzymes), or a vegan organic protein powder to get a little extra boost of amino acids to see whether that will help.

Since you have already done an OAT test, they will usually provide you with some info on overgrowth of bacteria and yeast, and an indication of amino acid deficiencies. Hopefully you already tackled SIBO and Candida yeast imbalance if there was any. Were there any notes on pancreatic enzymes in the report?

Other tests to consider if you have not already looked at exocrine pancreatic insufficiency (EPI) are:

1. Genova Diagnostics - FMV - Gives a great overall picture of nutrient deficiencies, microbiome dysbiosis, pancreatic enzyme issues, and many more. Biochemistry and metabolomics in practice. This test should be standard for all primary care and family practice doctors as a regular preventative maintenance test, and for anything chronic or hard to diagnose. Great Plains Laboratories has similar tests. These might be the ones you have already done, as you mentioned OAT.

2. Genova Diagnostics - Comprehensive Digestive Stool Analysis 2.0 with Parasitology (microbiome dysbiosis indicators), Fecal Fat Distribution (checks if you have issues with different types of fat intake and digestion), Elastase (for EPI, pancreas enzyme marker)and Chymotrypsin (for EPI, pancreas enzyme marker). Doctor's Data has similar tests.

3. 24 hour fecal fat test - Simple, cheap and tests if you are breaking down fat properly, which can indicate pancreas dysfunction.

4. MRI MRCP with contrast - Gives a great picture of pancreas and ducts, gallbladder and ducts, liver, stomach, intestines.
I am embarrassed that I either didn't see this, or I was too busy. I've been working on a major project and have been very distracted.

Re: SIBO: I got my first instance of SIBO in fall of 2015 after I had detoxed high levels of copper and lead for 6 months. That detox resulted in debilitating fatigue like I had never experienced before that entire 6 months. I look back and see that something was already wrong in me for a detox to cause that serious of fatigue.

I did my first OAT in 2015, six weeks into that detox fatigue from hell. I had issues in that OAT that pointed to a fatty acid oxidation problem, very high ß-Hydroxybutyrate (related to ketosis), high Cis-Aconitate, Succinate and Malate (related to energy), very high ß-Hydroxyisovalerate (elated to an Isoleucine metabolism disorder), high indican (which they said was related to the SIBO and poor breakdown of protein.

Re: CANDIDA: I overtreated that SIBO in late 2015, resulting in candida from HELL, which I fought for a good five months into 2016. When I did my second OAT in June 2016, Arabinose was high. And 2016 was the first time I had a MAJOR crash. I was lifting rocks and bam...an awful crash that put me in the worst fatigue ever, and took a full 9 days to recover from. Also in that 2016 OAT was SUPER HIGH Succinic, high Fumaric and Malic

Fast forward to 2018---my next OAT which showed much worse candida and now had high aspergillus!! Detoxing took many months as it was miserable. Lots of other energy problems, and VERY HIGH STATE OF KETOSIS!!

By the end of 2018, a wise doc said gallbladder, as my stools were now getting really bad! They had been good all these years until now. Got on Bile in December and it turned a lot around. It's as if my gallbladder has totally stopped working.

Redid the OAT in January 2019---just getting on bile reversed 21 issues on the OAT!!! I was shocked what bile could do. BUT....I still wasn't breaking down protein correctly and had two levels that the OAT said pointed to Glutaric Acidosis II. Andddd, I've had three major crashes this year, include the latest one last Thursday and of which I'm still feeling the fatigue from.

So....I'm left with that I may have GAII....or thanks to you pointing this out to me, BeADocToGoTo1, a sluggish pancreas! I'm blown away. Have contacted the doc and hope to hear from her Monday about all the testing.

TELL ME....is there a possibility that taking Grassfed Beef Pancreas might treat low amino acids from a sluggish pancreas? I just have a feeling it could if I have this. This: https://smile.amazon.com/Ancestral-...beef+pancreas&qid=1557026721&s=gateway&sr=8-1
 

BeADocToGoTo1

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Hi. I'm curious how much lipase is in the prescription you mentioned.
Hi grapes,

There are different sizes of the prescription pancrelipase. Dosages per pill are noted by their lipase enzyme content. For example, a Creon 36,000 USP pill contains at least 36,000 units of lipase (breaks down fat), but also contains 114,000 units of protease (breaks down proteins) and 180,000 units of amylase (breaks down carbs).

I have a prescription for 12,000 pills, 24,000 pills and 36,000 pills so I can adjust by meal or snack what I need. Mix and match. There are other brands that have slightly different lipase amounts. I would not get too hung up on the size differences, nor the seemingly high quantities. The amount needed will differ per person and per meal and is a bit of trial and error initially to figure out.

This website explains the workings of PERT (Pancreatic Enzyme Replacement Therapy) quite well:

https://www.creon.com/how-creon-works

Standard dosage guidelines for EPI are as follows:

Initial: 500 lipase units per kilogram of body weight per meal. This is what I started with.

Maintenance: 400 to 2,500 lipase units per kilogram of body weight per meal.

Maximum: 10,000 lipase units per kilogram of body weight per day.
 
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BeADocToGoTo1

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TELL ME....is there a possibility that taking Grassfed Beef Pancreas might treat low amino acids from a sluggish pancreas? I just have a feeling it could if I have this.
Not sure, and they do not test the enzyme levels. To be safe, I would not mess around with anything but prescription if diagnosed, as the quality and enzyme quantity is strictly regulated so you do not have to guess. I have used Thorne Dipan-9 before the diagnosis. You have to be careful of checking fillers and other ingredients the over the counter ones throw in.
 

grapes

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Not sure, and they do not test the enzyme levels. To be safe, I would not mess around with anything but prescription if diagnosed, as the quality and enzyme quantity is strictly regulated so you do not have to guess. I have used Thorne Dipan-9 before the diagnosis. You have to be careful of checking fillers and other ingredients the over the counter ones throw in.
Thank you. I wanted to find something non-prescription until I get all the tests done to see if this is officially my issue with my pancreas--the latter tests which will hopefully start this coming week.

I found that Pure Encapsulations - Pancreatic Enzyme Formula, which is made by a high quality company, no fillers and a vegetarian capsule, has this for one capsule:

lipase 17,500 USP units
protease 110,000 USP units
amylase 120,000 USP units.

I then looked at Thorne's Dipan-9 you took:

lipase 17,500 USP units
protease 115,000 USP units
amylase 112,500 USP units

So they are 5000 units less in lipase than the maximum of the guideline for my weight, and maintenance for my weight is (880 - 5500 lipase).

Anyway, I hope like heck to find out exactly why I'm crashing, even if with the protein powder, I was able to do more than usual without crashing....until I DID crash with even more activity.
 
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@grapes
I've used several dried glandulars and have benefited from them cosiderably, esp the desiccated beef liver and bone marrow.

Here's a company that uses only grass fed, pastured, naturally raised, healthy beef sources from New Zealand, which would be the safest way to go. New Zealand's laws governing the raising of cattle are the strictest I know of, and their products are safe and reasonably priced.

https://ancestralsupplements.com/pancreas

I've been thinking of adding in the pancreas myself.

Like you, I prefer to go the natural route whenever possible, and while I agree with @BeADocToGoTo1 re the relative strength and amounts of the enzymes, even tho it's hard to know how much of which is in the desiccated form it should be obvious fairly quickly if it's doing what you need done, yes?

Hope this helps :) :thumbsup:.
 
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PS ...... I just realized that you already included a link to Ancestral Supplements in your post above the one I was responding to. Apologies for the repetition, but congrats on finding the best company I was able to find after the same long search I'm guessing you did .... they're really good, and the owner, Brian I think, will respond quickly to any questions you may have, or any direction you may need.
 

BeADocToGoTo1

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Thank you. I wanted to find something non-prescription until I get all the tests done to see if this is officially my issue with my pancreas--the latter tests which will hopefully start this coming week.

I found that Pure Encapsulations - Pancreatic Enzyme Formula, which is made by a high quality company, no fillers and a vegetarian capsule, has this for one capsule:

lipase 17,500 USP units
protease 110,000 USP units
amylase 120,000 USP units.

I then looked at Thorne's Dipan-9 you took:

lipase 17,500 USP units
protease 115,000 USP units
amylase 112,500 USP units

So they are 5000 units less in lipase than the maximum of the guideline for my weight, and maintenance for my weight is (880 - 5500 lipase).

Anyway, I hope like heck to find out exactly why I'm crashing, even if with the protein powder, I was able to do more than usual without crashing....until I DID crash with even more activity.
I hope so! That difference in units is not a big deal. Things to look for are things like changes in how you feel, energy level, intestinal discomfort level, bloating, pain, your stool quality, speed of digestion. If you are taking 1 pill, take it after the first bite or so. If you are taking 2, take the second pill around the middle of the meal. I also a pill towards the last bite of the meal. This is to try to mix it as much with the food.

The other important difference to know is whether the pills are enteric coated (time release), so that they survive the acid bath in the stomach and are used in the duodenum where they are needed. Most otc ones are not, and thus much less of the enzyme will end up in the duodenum. So in the interim you may have to play around a bit with the number of pills. Start with one to see how your body reacts and perhaps experiment a bit. If you take too much, you might feel some burning in the stomach or light nausea.

Anything with calories, whether it is a snack, drink or meal would require enzymes with EPI, in order to break down the nutrients into usable bits.
 

grapes

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@grapes
PS ...... I just realized that you already included a link to Ancestral Supplements in your post above the one I was responding to. Apologies for the repetition, but congrats on finding the best company I was able to find after the same long search I'm guessing you did .... they're really good, and the owner, Brian I think, will respond quickly to any questions you may have, or any direction you may need.
Oh, no problem! I had a bottle of Ancestral pancreas that I had used when I 'wondered' about my pancreas about 3-4 months ago, but not to the degree that I am wondering now. So I restarted on it yesterday, though taking 6 caps.
 

grapes

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The other important difference to know is whether the pills are enteric coated (time release), so that they survive the acid bath in the stomach and are used in the duodenum where they are needed. Most otc ones are not, and thus much less of the enzyme will end up in the duodenum. So in the interim you may have to play around a bit with the number of pills. Start with one to see how your body reacts and perhaps experiment a bit. If you take too much, you might feel some burning in the stomach or light nausea.
Good to know about both the stomach acid issue and how to start. Are you recommending to start with one cap of Pure Encapsulations, for example, even with it having 17,500 units Lipase?

One thing...I already have some empty enteric coating capsules from Amazon that I could transfer the product to.
 

grapes

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@grapes
Like you, I prefer to go the natural route whenever possible, and while I agree with @BeADocToGoTo1 re the relative strength and amounts of the enzymes, even tho it's hard to know how much of which is in the desiccated form it should be obvious fairly quickly if it's doing what you need done, yes?

Hope this helps :) :thumbsup:.
Hi. So many prescription meds are based on natural ways to treat. Sure, they can be stronger than natural, but it doesn't take away that natural can work if you take enough. So knowing that, I lean towards trying to make Pure Encapsulations work since it's porcine. Our tissues are very compatible with porcine tissue. So thanks to the advice of BeADocToGoTo1, I'll watch how my stomach reacts. But the BIGGEST TEST is whether I will sooner than later start to be able to be more active without the horrific crashing I go through.
 

BeADocToGoTo1

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Good to know about both the stomach acid issue and how to start. Are you recommending to start with one cap of Pure Encapsulations, for example, even with it having 17,500 units Lipase?
Regarding starting with one, it is something prudent I would recommend with anything new, just in case of allergies or sensitivities. I really hope you feel improvements quickly.
 
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grapes

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Regarding starting with one, it is something prudent I would recommend with anything new, just in case of allergies or sensitivities. I really hope you feel improvements quickly.
Hi. I'm thinking you don't understand that "one" capsule of Pure Encapsulations has 17,500 units of Lipase. That's a lot for what I'm learning from you. I can see opening the capsule and pouring part of it into another capsule, then taking that. Heading to the doc tomorrow, by the way, to talk about this.
 

grapes

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Forget the doctors trying to fix it. They won't. It is up to you.

I don't have the major pancreatitis swelling in my back any more.

One of the major causes of pancreas problems is cholesterol clogging up the liver, gallbladder, pancreas etc. so cholesterol can cause major problems with liver, gallbladder, bilary duct and pancreas. Let me make it clear that virtually all the cholesterol is goodness for the body. It's badness when it clogs up that area. It sets off a whole chain of reactions. Sadly, doctors tell patient to cut out gallbladder. People don't realize how dangerous medical doctors are.

For anyone with pancreas and gallbladder problems ,,, cleansing this area needs to be done ...search for my posts on Gallbladder flush and Liver steatosis inflammation ...

The other possible problem could be blood flow to area ... coagulation should be considered ... nattokinase(mild problem), doctors best lumbrokinase (severe problem) ... i'd take serrapeptase also to clear away dead tissue

1000 mg of chromium has been shown to positively impact pancreas in rats

I don't use doctors or tests. I can use an anatomy chart to locate the problem. I concentrate on finding things that will healing me.
Prioris, where exactly are your posts on "Gallbladder flush and Liver steatosis inflammation"? I did a search on the latter and found nothing? I am now totally dependent on Bile for every meal, which started in late 2018. A week ago, I took my morning bile, then forget the rest of the day due to being away from the house. And the next day...I was slightly nauseous all morning, and far more nausea that afternoon, even though I started up again the bile that morning. I have NO IDEA why my bile production went south.