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Lack of proteases (pancreatic enzymes) and the symptoms of CFS

Discussion in 'Gastrointestinal and Urinary' started by Annesse, Dec 28, 2011.

  1. CAcfs

    CAcfs Senior Member

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    I think there is something to this. I have noticed that I seem to NEED tyrosine (an amino) in pill form to function like a human being (though I quit because I didn't want to Band-Aid the problem).....and guess what?!?! You need to break down the proteins you consume to get those aminos (people on PR who understand digestion know this, but those of us with only high school or basic college science may not recall that amino acids=proteins which need proteases to be broken down...I needed Wikipedia to make these connections). It took me awhile to figure out that anything with "L-" in front of it is an amino acid, unraveled in my STOMACH, and also other parts of the digestive system....requiring enzymes from various parts of my GI. I spent a day listing all the digestive enzymes I could find by name (and noting what exactly they break down, food-wise), even the weird/random ones, and trying to find a supplement that supplied basically every enzyme or covered every food substance.

    The closest I could find was Now's Digest Platinum. It had a few random enzymes I couldn't find elsewhere. Then I decided to "pad" that pill with Country Life's "Glutenzyme." Well, the Now supplement burned my stomach big time. The Country Life one doesn't seem to. Also, I noticed that Wobenzym contains the enzyme Trypsin, which I couldn't find in any digestive supplement, except one really pricey digestive one. From what I understand, Trypsin works in the small intestine, not the stomach, and it is sort of the "enzyme of last defense," when it comes to proteins/aminos from foods (and possibly supps?). In other words, it further breaks down those aminos. This is based on MY research, so I could be wrong. So I figured I should also take my Wobenzym with foods/supps.

    Note that I didn't read this whole thread, I am just spilling my thoughts here, because the original topic paralells what's been on my mind.

    Anyways, it seems that I have an obvious case of B12 deficiency, and am anemic by bloodwork, even though my iron is fine. Also, I don't seem to have enough collagen (my opinion), and other things I need from foods. So tackling absorption seemed like an obvious decision. I have done some decent diets, so to me, it seemed like this problem was deeper than some fancy elimination diet. That is what began my mini-fascination with enzymes. That, and my hair was getting very fine and wispy, and I figured the problem was absorption. I think it was/is due to vitamin deficiency.

    Another thing catching my attention is Intrinsic Factor. Read first two paragraphs here for its importance. http://en.wikipedia.org/wiki/Pernicious_anemia I.F. is something we all seem to need, yet I don't hear it talked about much here. So far I'm only really finding it in Metagenics' Intrinsi B12/Folate supplement. They say on that Wiki page that B12 shots are the Treatment, but wouldn't it be nice if we could address the real problem and take the I.F.? Because I'm just not sure the shots would really duplicate getting what we need from food. I did lots of B12 shots (methyl, high quality), and while they helped, they weren't a perfect solution....I became almost dependant on them, and it didn't feel like a full solution.

    From vitamins back to aminos...If I could just get some Tyrosine from food, not powdered, which makes me edgy, I'd be doing pretty good. Also, who among us doesn't need Seratonin and Melatonin, which come from our friend, L-Tryptophan? Taking the aminos in pill form never works out properly....I need my body to do this for me.

    So those are my thoughts. Enzymes to unlock everything.....and possibly taking this Intrinsic Factor. Would love to hear if anyone has brand recommendations for the enzymes and for the I.F, and any other thoughts. What proteases are you all taking, what brand? Need specifics. An how are you preventing them from hurting your stomach (I got BAD stomach cramps, so maybe too high dosage for my tiny tummy). Thanks. :)
     
  2. adreno

    adreno 3% neanderthal

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    Are we sure increasing lactid acid is a good idea in CFS/ME?

    Sauerkraut contains both the L and D enantiomers, right?
     
  3. adreno

    adreno 3% neanderthal

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    OTOH, this study found minor improvements:

     
  4. Annesse

    Annesse Senior Member

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    Great post CAcfs. Sometimes though we do see improvement with certain isolated nutrients, but they can overtime increase our symptoms. Vitamin D comes to mind. It is a secosteroid and if taken in an isolated form can initially decrease inflammation, but then,overtime, has been shown to increase inflammation. This is especially true I think if we have lost the ability to metabolize certain nutrients, as is the case with many of the nutrients found lacking in autoimmune disease. Here is some info from Science Daily on vitamin D.

    "Low Levels Of Vitamin D In Patients With Autoimmune Disease May Be Result, Not Cause, Of The Disease
    ScienceDaily (Apr. 8, 2009) Deficiency in vitamin D has been widely regarded as contributing to autoimmune disease, but a review appearing in Autoimmunity Reviews explains that low levels of vitamin D in patients with autoimmune disease may be a result rather than a cause of disease and that supplementing with vitamin D may actually exacerbate autoimmune disease."


    --------------------------------------------------------------------------------

    "Authored by a team of researchers at the California-based non-profit Autoimmunity Research Foundation, the paper goes on to point out that molecular biologists have long known that the form of vitamin D derived from food and supplements, 25-hydroxyvitamin D (25-D), is a secosteroid rather than a vitamin. Like corticosteroid medications, vitamin D may provide short-term relief by lowering inflammation but may exacerbate disease symptoms over the long-term."

    We also had a discussion on this thread about supplemental B12 and its possible link to increased disease risk. The Norway study found a 38% increased risk of cancer. I know that some of this risk could possibly have been mitigated by the use of a different form of folate or B12, but nonetheless, these findings should give anyone pause. Someone also posted some studies that show supplemental B12 has been ineffective in resolving the symptoms of vitamin B12 deficiency. The problem with B12 in ME/CFS is not that patients are not consuming the foods (high protein foods) that contain B12, but as the previous study I posted showed, without the necessary pancreatic enzymes, you would not be able to release vitamin B12 from the protein, nor would you be able to bind or transport it.

    I also posted a study that shows amino acid supplementation can increase disease risk. I believe the amino acids were phenylalanine and tyrosine.

    Here is a study on tryptophan and its link to to increased disease risk. The study states," We speculate that the pathogenesis of this syndrome may related to abnormalities in tryptophan METABOLISM."

    http://jama.ama-assn.org/content/263/11/1502.abstract

    The digestion of our food is a wondrous feat. I believe that trying to restore our GI tract through fractionated isolated nutrients of any kind will not prove to be beneficial. And could cause us further harm. I read something once that said man has the ability to recreate the exact same chemical composition of the sea, but life cannot be sustained in it. Protein digestion is a beautiful ballet of nature. One man will never be able to duplicate.
     
  5. determined

    determined Senior Member

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    In my own long history dealing with CFS, I would put the beneficial effects of sauerkraut in my "second tier" category. For the time I was able to tolerate it, I had increased energy and stamina. I still periodically try to sneak it in my diet; I can tolerate it in small amounts only now. While I was using it daily, I took a tablespoon or two of Buppee's sauerkraut with each meal.

    My "first tier" category treatments are doxycycline, chemotherapy, and most recently, tiny, diluted doses of methylfolate and mB12. I continue to enjoy my increased energy from the supplements. Here is a link to my experience with the methylation supplements...

    http://forums.phoenixrising.me/show...ERY-low-very-slow-results&p=173804#post173804
     
  6. richvank

    richvank Senior Member

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    Hi, Adreno.

    Yes, the principal lactic acid bacteria in sauerkraut (Lactobacillus plantarum) produces equal amounts of the L and D lactate enantiomers. It has enzymes to make each of them, and it also has a racemase that will convert one to the other (PMID: 17046538). This bacteria is commonly found in the gut in mammals, including humans. There are also other bacteria normally found in the gut in humans that make D-lactate. If there is a serious leaky gut problem, so that a lot of D-lactate gets into the blood, it can cause neurological problems. Dr. de Meirleir looks especially for Streptococcus and Enterococcus bacteria in his stool testing, because they produce large amounts of D-lactate. I don't have a good answer for the concern you have raised. Perhaps it would be a good idea not to "pig out" on the sauerkraut immediately, but to take it easy at first.

    Best regards,

    Rich
     
  7. Annesse

    Annesse Senior Member

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    Other common findings in CFS are sleep apnea and dysphagia. Both of these conditions can be traced directly back to an inability to digest proteins. Both dopamine and acetylcholine have been found to be lacking in patients with sleep apnea. The essential amino acid, phenylalanine, which is found in high protein foods, would be needed to produce dopamine. Dopamine is derived from tyrosine and tyrosine is derived from phenylalanine. Vitamin B12 is necessary to produce acetylcholine. (acetylcholine comes from choline, choline comes from B12) Here is the information on the lack of dopamine and acetylcholine in sleep apnea. The researchers stated, "We found that the lower the dopamine, the worse the REM sleep behavior; and the lower the acetylcholine, the worse the obstructive sleep apnea."

    http://www.webmd.com/sleep-disorders/sleep-apnea/news/20030707/faulty-brain-may-cause-sleep-apnea

    Dysphagia (difficulty swallowing) is another disorder found in CFS. Dysphagia can also be traced to a lack of acetylcholine. Here is what the researchers stated," acetylcholine-producing neurons are connected to the part of the brain that controls muscles of the upper airway and tongue.."
    This would make sense, since difficulty swallowing is a common finding in Myasthenia Gravis, which is caused, in part, by a lack of acetylcholine.
     
  8. adreno

    adreno 3% neanderthal

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    Well, I did a little n=1 experiment on myself yesterday. I had some sauerkraut (about 100g) with my dinner. It made me feel awful. Started with headache, gas and bloating, then insomnia, nausea, diarrhea and just overall increased feeling of malaise, pain and fatigue. I feel even worse today than I did yesterday. I don't know if this reaction would be expected in the beginning, but it certainly isn't something I feel eager to eat again anytime soon.
     
  9. Waverunner

    Waverunner Senior Member

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    Same here. I don't tolerate sauerkraut like I don't tolerate many other vegetables or fruits. I'm 100% positive that in many people with ME/CFS digestion is screwed beyond the point where enzymes or bacteria or a leaky gut are responsible for it. The fact that KDM finds fructose malabsorption in most of his patients although these people had no problem with fructose before the onset of ME/CFS points into this direction. The overall integrity of the intestine seems to be impaired and I'm sure again that as long as the cause of this impairment is not resolved it makes no sense to rely on all these foods that seem so healthy for us while they only cause problems. You won't resolve this illness by eating sauerkraut or taking probiotics. These things may help some persons with ME/CFS but there are enough people who will not receive any help by these things. Maybe we should differentiate between people with ME/CFS who have huge sensitivity/allergy/digestion problems and those who have not. I don't want to offend anyone and I certainly don't know if we suffer from the same disease but I really have enough of all this try this diet, try that diet, try this food, try that food, try this supplement, try that supplement. I tried all of it and while it most of the time was a burden, it did not help. This illness goes beyond diet and supplements, maybe not for some people but certainly for me.
     
  10. adreno

    adreno 3% neanderthal

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    It really is quite meaningless to speak of "low dopamine" or "low acetylcholine", because neurotransmitter concentrations are location dependent. It makes much more sense to speak of hypo- or hyperactivity in specific brain regions and/or circuits. These regions/circuits usually include activity of more than a single transmitter.

    For instance, ADHD is associated with hypoactivity of the PFC, specifically involving both dopamine (DA) and norepinephrine (NE). This doesn't mean that DA and NE is low across the whole brain, however. Parkinson's is associated with low DA levels in the striatum. Are these diseases/disorders caused by the same issues? No, they are not, and they are certainly not caused by an inability to digest proteins.

    Your argument that: A) sleep apnea is low in DA, and B) DA is synthesized from phenylalanine, therefore C) sleep apnea is caused by a inability to digest proteins, is not even logically coherent. The premise (A and B) does not in any way lead to the conclusion (C). There are lots of unknown variables and reasons that could cause DA to be "low".

    Some of the things that influence neurotransmitter concentrations are genetics (and epigenetics), variations in activities of enzymes such as COMT and MAO, receptor densities, autoreceptor sensitivity, and influences from the endocrine and immunological systems, such as hormones and cytokines.

    The neurological, endocrine and immunological systems interact in vastly complex ways, and reducing diseases/disorders involving these systems to a simple amino acid deficiency is just pure nonsense. Following your line of reasoning, ADHD and Parkinson's should be caused by the inability to digest phenylalanine, depression by the inability to digest tryptophan, aso. There is not a shred of evidence anywhere to support this idea, or for that matter that sleep apnea or dysphagia are caused by this.

    Even if it could be proven that sleep apnea and dysphagia were caused by inability to digest proteins, there is nothing at all to suggest that the same would be the case in CFS/ME. Just because some people with CFS/ME have sleep apnea (and vice versa), it is not evidence that the disorders have the same etiology. If a person has CFS/ME and cancer at the same time, does this mean that cancer and CFS/ME are the same? That is preposterous.
     
  11. aprilk1869

    aprilk1869 Senior Member

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    Based on what I've read, if you buy one from a jar you need to avoid anything that's been pasteurised as this kills off all the good bacteria.

    This product seems quite good although I plan on making my own:-

    http://www.planetorganic.com/fresh-raw-health-organic-sauerkraut.html
     
  12. Valentijn

    Valentijn Activity Level: 3

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    I live in sauerkraut land (my Dutch fiance was literally delighted that I wanted him to buy me some), so I'll give it a try and see what happens. None of it's pasteurized here, and he even brought home an organic brand from the supermarket.

    Of course, at least some it will have to be eaten in proper dutch style with mashed potatoes, bacon, and who knows what else :p
     
  13. aprilk1869

    aprilk1869 Senior Member

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    I posted this on the Glutathione & Precursers thread but I thought I'd post it here too:-

    http://forums.phoenixrising.me/show...ethylb12-and-Methylfolate-Deficiencies/page13

    "I don't have ME but I think whey caused raynaud's in me. Basically about 6 years ago I joined a gym but instead of getting stronger I got weaker. I was told I needed to eat more and drink a protein shake before and after a workout. I did this and it made a massive difference.

    However during the time I was a member of the gym (1 year) I was getting flares of raynaud's in my fingers and toes. I then moved to another part of the country which didn't have a decent gym so I stopped exercising and therefore stopped the whey and I didn't get any more flares.

    I could never understand why I only got flares in that year and never since. Perhaps this is the answer. Also, maybe it has something to do with digesting proteins as per what Annesse has been saying in the other thread (mal-digested proteins cause the immune system to mount an attack therefore causing autoimmune diseases).
    "
     
  14. adreno

    adreno 3% neanderthal

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    Apparently, DNAse 1 is found in malted barley. Maybe we should just drink more beer?

    http://agris.fao.org/agris-search/search/display.do?f=1989/KR/KR89004.xml;KR8935620
     
  15. Jenny

    Jenny Senior Member

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    Thanks for this, aprilk. We've got a Planet Organic just up the road so I might try some.
     
  16. Annesse

    Annesse Senior Member

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    Hi aprilk1869, I think you have made a very important connection. If someone is unable to digest proteins properly, they will not only be lacking essential amino acids and nutrients that are needed for literally every cell in their bodies, but these undigested proteins will then end up in their bloodstreams and illicit an immune response.

    There is more to the disease process when it involves proteins however. I think this is the connection you have made. The reason these unbroken down proteins illicit an immune response is because they are foreign to the body. These are just normal dietary proteins that we are talking about. One thing happened to make them a target for the immune system-they were not properly digested.

    You ingested whey protein. Whey is not a normal dietary protein. Whey is a byproduct of the cheese manufacturing industry. Whey protein is highly processed. Proteins fit together like locks and keys. You need to do almost nothing to a protein to change its shape to make it useless and even dangerous to your body. Just heating milk in the process of pasteurization will change the shape of the proteins in the milk. This is most likely one reason why milk has become the No. 1 allergic food in the country. Your immune system will react to these denatured proteins in the same way as it does proteins that are not properly broken down.

    Denatured proteins are found in thousands of food products. No amount of sauerkraut will be able to digest proteins our bodies were not designed to consume. We should think of our GI tracts like an ecosystem. (Because they are) The entire ecosystem is out of balance and will need to be restored. Imagine you are getting ready to plant a garden. Are seeds the only thing you will need? This is one reason I mentioned the support group.
     
  17. Waverunner

    Waverunner Senior Member

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    Hi Annesse,

    What I don't understand is how you want to correct the protein problem. We can eat healthy, take probiotics and take certain enzymes but do you think that this is enough to do the trick? I don't understand what the difference between your approach and the overall approach, to aid digestion, of many doctors in the alternative field is.
     
  18. Annesse

    Annesse Senior Member

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    Hi Waverunner, first, I am firm in my belief that taking supplemental probiotics and enzymes would be counterproductive. I believe the body needs its nutrients in the original package that nature has put them in. So, you won't find a long list of supplements to purchase or take in our recovery program. I think the recovery part of our book is vastly different from any other approach I have ever seen. For example, when have you ever heard of someone recommending raw fermented organic sauerkraut as a beneficial food for recovering from ME/CFS? Or provide studies that show someone with celiac disease can actually eat bread with no toxic side effects as long as the gluten (a protein) has been partially digested with real sourdough yeast.

    Now imagine if I would have started this entire discussion by first telling you about the sauerkraut without giving you any information on the disease process involved. I think that would have gone over like a lead balloon. A through understanding of the disease process is necessary before you can convince someone of the things they need to do to recover. I don't know of any other approaches that have identified the disease process and then based their treatment on this knowledge.

    The recovery section is one-third of our book. If you would like to check it out, it is available at the library. If your local library doesn't have it, they should be able to get it from one that does.

    To The Group: I was going to post next on the connection to PEDD (pancreatic enzyme deficiency disease) and interstitial cystitis. Interstitial cystitis is commonly found in CFS patients. I think though that I have given you all enough information that you should be able to do this on your own. You know it would involve inflammation. The inflammation part of the PEDD pathway would involve tumor necrosis factor,homocysteine or both. Some key words you would search for are endothelial cells, apoptosis and mast cells. (mast cells release tumor necrosis factor) Tumor necrosis factor is regulated by proteases. Homocysteine becomes elevated due to a lack of B12. Homocysteine causes the endothelial cells that line all of the blood vessels to commit mass suicide or apoptosis. I would like to send a free book to the first person that gets this figured out.
     
  19. Valentijn

    Valentijn Activity Level: 3

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    That's a lot of belief. Is there scientific data showing that supplements are inferior to sauerkraut?

    I presume you're referring to the study at http://www.ncbi.nlm.nih.gov/pmc/articles/PMC348803/ . While it does provide food for thought, I have some serious doubts about the manner in which it was conducted. For starters, the "In vivo challenge" section under "Materials and Methods" seems to be discussing a different group of patients and different method of testing compared to the "In vivo acute challenge" section under "Results".

    The methods discussed in "Materials and Methods" seem quite reasonable: 20 celiac patients are tested for intestinal permeability, then double-blinded to receive EITHER typical bread OR the special sourdough bread. The patients ate their respective breads for two days then had intestinal permeability tested again.

    The "Results" section seems to discuss the same group, at first glance. 20 celiac patients were recruited after being on a gluten-free diet for two years. Intestinal permeability was tested somehow. But 3 were excluded due to permeability indicating they'd had gluten recently. The remaining 17 first ate regular bread, then the same 17 also ate the sourdough bread.

    The "Discussion" section refers to the "in vivo challenge" and the "in vivo acute challenge" interchangeably. They refer to data from the in vivo acute challenge in a paragraph discusing "the in vivo challenge".

    Even if we ignore this mess and assume the "Materials and Methods" protocol was some sort of test run (despite being described otherwise), and the protocol coming from the "Results" description, are the real study, there is a big problem with it:

    Prior to eating normal bread, they were on a gluten free diet for at least 2 years, but prior to eating the special sourdough bread, they had recently eaten gluten. For a lot of people dealing with sensitivities, they don't experience a full reaction every time they eat a food if they've eaten it recently, but will experience a full reaction when they have avoided a food for a while, then reintroduce it to the diet, such as happens with an elimination diet.

    While it is possible that what happens biochemically does not reflect the symptoms noticed by people with a food sensitivity, I think this issue and the lack of discussion of it is a potentially a huge weakness in the study. Viewed in combination with the complete lack of reporting of results for the double-blinded challenge used in the "Materials and Methods", I have very little faith in the published results of this study. I certainly think they have overstated their case when saying "This study shows that CS patients subjected to an acute challenge tolerated breads produced with sourdough better than those started with baker's yeast."

    Maybe there's other studies somewhere showing variations (or lack thereof) in intestinal permeability of celiac patients having consecutive doses of gluten, compared to intestinal permeability after a similar period of time without eating gluten. However, this study doesn't give the time period between patients consuming the normal bread and the sourdough bread, which leaves this study in the "mildly interesting but largely useless" category.

    I metaphorically skipped to the end of the novel when you started posting and found where you had posted the sauerkraut solution on another forum. Although many of your theories have significant holes in them, and at least some of the research you rely on is of dubious quality, that doesn't necessarily mean your theories are wrong. Unpasteurized sauerkraut is very cheap and easy for me to obtain, plus it probably has some health benefits. So I'm giving it a try to see if it at least helps with GI symptoms, even though I don't buy into the underlying premise of impaired protein digestion causing all auto-immune disease.
     
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  20. Jenny

    Jenny Senior Member

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    Several of the doctors I've seen over the years have recommended sauerkraut. Dr Myhill does too. And here is an interview with Dr Logan on this forum, who also recommends it:

    http://forums.phoenixrising.me/showthread.php?83-The-Dr-Logan-Gut-Interview-Part-II

    Also, we've discussed it quite a bit on this forum. You can see our discussions by doing a search.

    Jenny
     
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