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

[richvank]

Hi, Annesse.

The webpage you cited contains the following statements:

"It is likely that most of the negative health effects shown in this study are related to folic acid, more than to vitamin B 12. Health experts have suspected for some time that folic acid may be a "double-edged" sword."

Folic acid is a synthetic form of folate, not found naturally. In the methylation treatments, we favor the natural forms of folate. B12 should not get a "bad rap" because of this study. It was not given except with folic acid.

I agree that it's preferable to get one's essential nutrients from foods. However, I suspect that a lot of the foods sold these days are lacking in sufficient levels of the essential nutrients as a result of "scientific agriculture," which has focused in the past on increasing yields and hence profit, not on nutrition. Not everyone is in a position to grow their own food or to obtain high-quality foods. Also, Prof. Bruce Ames has shown that genetic differences among people result in higher needs for particular nutrients in some people. Furthermore, it is sometimes necessary to use a nutrient at a pharmacological dosage (not available by eating foods) in order to break a vicious circle mechanism. For these reasons, I think that nutritional supplements do have important roles to play. But I don't disagree that the general state of health would be better if people made better food choices.

Best regards,

Rich

 

[xchocoholic]

I think the main problem here is that you're trying to group us together when we have
a variety of problems causing our me/cfs. I don't think you realize how complicated some
of us have it. The definition of cfs is to blame.

For example ..

I became totally disabled with me/cfs in 1990 after catching something that lead to non stop uri's, uti's,
muscle spasms in my shoulders, pain, brain fog, ataxia, fatigue, dysautonomia, etc.

I became a celiac in 2005 and after 1 year gf, the ataxia that I'd had from 1990 - 2006 disappeared.
Meaning that I have a severe gluten intolerance. Imho, Not everyone here does tho.

I've been on an organic paleo diet for over 3 years now. From 2005 till 2008 I was on a gfcfsfcf
+ toxin free diet. So my diet is clean. I just started a more plant based diet BUT because
I have an oxalate problem, I'll have to be very careful.

I have disabling dysautonomia but not everyone here does. I have hashimoto's.

I could go on, but my point is that we're not the same here and yet we're all diagnised
with me/cfs.

Btw, my homocysteine rocks and my b12 was over 1600 the last time it was tested. That
was from taking sublingual b12. Methyl and adenosyl at the same time. I stopped these
because I couldn't sleep.

I agree with you on needing aminos but I appear to need a lot more than that. What I need
because of my associated conditions is different from what others will need due to their
associated conditions, genes, nutritional deficiencies ,etc ..

I'm pooped now .. Lol .. Tc .. X

 

[Annesse]

Hi Rich, I agree with the premise of your statements, maybe just not the conclusion. There are thousands of unidentified compounds in whole foods. Every nutrient we take into our bodies interacts with at least 9 other nutrients. We have seen the harm that taking in unbound nutrients can cause to our bodies.( As in the case of calcium, vitamin D, iron or copper) Since man as no idea what the 90% of nutrients yet to be discovered are, there is no way we will be able to safely take isolated nutrients into our bodies. Here is an additional article from the Globe and Mail that found B vitamins are linked to heart and kidney damage in diabetics.


http://www.theglobeandmail.com/life...rt-kidney-damage-in-diabetics/article1548903/

I have seen many many recoveries from very serious diseases,such as CFS, MS and lupus, just by eating foods that replace these enzymes and by restoring the health of the GI tract. All done through diet and diet alone.

 

[xchocoholic]

Not to be a debbie downer but what if the digestive tract can't be healed ? Celiac sprue comes to mind as does diverticuli but I know they're others.

Annesse,

I apologize if I just seem argumentative here. I seem to have an angry attitude when it comes to cfs.
I'm really quite pleasant .. Lol .. X

 

[Annesse]

Hi xchocoholic, I think if we pause for a minute and look at a disease that we know is caused by the inability to break down a protein (gluten) we should be able to see the forest. Yes, not all celiac patients will have the same symptoms or even degree of symptoms as everyone else with celiac disease. The inability to digest gluten will vary from person to person. And it will be based on a variety of factors, such as the amount of enzymes and bacteria each person has to begin with and other environmental and dietary factors. But, the answer will be the same for everyone; restore the body's ability to digest gluten.

If you have been eating a paleo diet and you have lost the ability to digest proteins, then that would be the very same thing as a celiac patient eating gluten to recover from gluten intolerance. It won't work, it will just make you sicker.

 

[Annesse]

Hi again xchocoholic, our posts crossed over. I think you are a very pleasant person. If I can't take the heat.... right? I don't blame you for being skeptical. We should all keep an open mind, just not so open our brains fall out. I have an Ace in the hole, though. One Rich doesn't even know about. Studies that show (5 to be exact) that even celiac patients can eat gluten with no toxic side effects as long as the gluten is properly broken down the way nature intended. I did want to provide some more evidence as to the cause of CFS first though. Such as why CFS patients have an intolerance to alcohol and a few other connections, yet to be made.

 

[richvank]

Hi, Annesse.

The article you cited claims that the study was published in JAMA in 2010. I can't find it in PubMed. If this was part of the VITATOPS study that David Spence was involved with, the patients were given 2 milligrams per day of folic acid as part of the protocol. I suspect that the folic acid was again the problem.

Whenever a study is reported that involves nutritional supplements, I have found that it is important to find out who funded it, and what income the authors have had from the pharmaceutical companies. It's also important to look carefully at the protocol they actually used. The headlines are often misleading. The media derives much of its financial support from pharmaceutical advertising, and they have a history of trying to discourage the use of nutritional supplements.

I am interested in recoveries produced by foods alone. I'm all in favor, when it works. I'm just not sure that diet alone is going to bring everyone to recovery. I'm very glad that it worked for you, and that you have seen many other recoveries.

Best regards,

Rich

 

[Annesse]

Hi TheMoonIsBlue and Rich, an international Internet group has been started on our book. I didn't start the group, so I have no control over the content and I am not allowed to post there, because Daily Strength won't allow any of this information on their main boards. (Why is that do you think?) There are 118 members from around the world that are posting testimonials based on their recoveries from the diet in our book. My daughter just came back from a speaking tour arranged by one of the members (a nurse for 30 years) that was bedridden with RA, but is now walking her dogs and gaining mobility and strength daily. She is taking no supplements or drugs.

Just in my hometown, I have seen my neighbor make a complete and full recovery from MS. Also, a nurse in town that went on the diet has completely recovered from lupus. I have make a full recovery from CFS, fibromyalgia and lupus. The book has only been out around 2 months, so I believe we will begin to see many many more full recoveries.

Like a plant that needs water, we have just overlooked one of the most basic human nutrients; enzymes. Forget the food pyramid, we need clean proteins and we need enzymes and beneficial bacteria in order to digest them. It really is that simple.

 

[Waverunner]

Like a plant that needs water, we have just overlooked one of the most basic human nutrients; enzymes. Forget the food pyramid, we need clean proteins and we need enzymes and beneficial bacteria in order to digest them. It really is that simple.

It's not that simple. I am very sceptical. There are thousands, maybe even millions of PWME who tried all kinds of diets and yet you claim again that your diet is the solution. We've heard that often enough. While some get better, 99% of these diets are no cure and what works for some doesn't work for others. You don't go much into detail about your proposed diet but I'm quite sure that you didn't develop any new foods, so your diet consists of already available foods. Especially your last paragraph looks a lot like enzymes, probiotics, organic, healthy food. People tried that a millions times, not only PWME but people with all kinds of diseases and it was no solution.

I found this part of a comment on amazon:

Raw, unpasterized dairy products and fermented foods play an important role, as do organic fruits and vegetables, grass-fed meat and eggs from healthy, free-roaming chickens.

This is funny because my TV guide proclaims the same diet every few months. Eat raw foods, eat organic foods, eat organic fruits and vegetables, eat organic meat...try certain probiotics, try some enzymes...

If curing diseases was that easy, we would all be healthy by now. I mean, c'mon, we've heard this a million times and I don't need to buy another book for that advice. Moreover I highly doubt that your stories about curing MS and lupus are correct. Anyone can make up these stories and unfortunately there are always people who believe it without any prove.

What really annoys me however is the fact this book received 8 highly doubtful reviews. Each review rated the book with 5 stars BUT after checking all of the reviewers one finds out that from these 8 customers, 7 made exactly one review and they all rated this book with 5 stars while they did nothing else. The 8th customer had 2 reviews and he also gave 5 stars, while his other review requested the boycott of a CD because a young girl criticized the Pope (4 of 39 people found this review helpful).

This diet seems anything but a breakthrough.

 

[sianrecovery]

Interesting thread this, thank you everyone who has posted. The info on calcium was especially helpful, thanks Annesse. I'm with xchocoholic on the individuals variations thing tho - I have ME, but I also have Medullary Sponge Kidney, KPU, Blastocytosis, and osteoporosis. I have clear issues with the proper use of calcium in my body, as my bones are losing densitiy, and my kidneys are calcifying and my urinary out put of calcium shows I am excreting too much. The doc treating me has just suggested Vit D, strontium, and high doses of pancreatic enzymes. I've also just begun Rich's protocol, and the KPU protocol. (confused? I am...)
I've followed an organic paleo diet, but I have now watered that down, because I cant reconcile the amount of meat it requires with my bone health and stone formation. Much as I yearn for the one size fits all, underlying mechanism answer, and continue to keep trying different things, I think individual variability is particularly pronounced in our community, and ultimately, I can only judge by my own body's response.

 

[Jenny]

I did want to provide some more evidence as to the cause of CFS first though. Such as why CFS patients have an intolerance to alcohol and a few other connections, yet to be made.

Hi Annesse

Just to say, as others have said on this thread too, that we patients are quite a diverse group. I have no problems with alcohol, for example, so any explanations would have to take account of that. But I don't consider myself as having CFS - 'fatigue' is not my primary symptom. I have ME - mainly neurological and autonomic symptoms, and extreme weakness. Are you talking about ME or fatigue illnesses?

I appreciate your links to studies, but could you provide links to the original papers please? As Rich has said, one needs to read the original paper to get the full picture.

Jenny

 

[richvank]

Hi, Annesse.

I hope you won't be discouraged from posting here by all the "flak" I and others seem to be throwing up at you! I truly am interested in your approach, particularly for the autoimmune diseases. As I've written before, I don't think that ME/CFS is an autoimmune disease, in spite of the interpretation that the Norwegian authors have given to the results of their Rituximab study.

In the case of the autoimmune diseases, it seems very plausible to me that the immune system is responding to a protein that it recognizes as "foreign." That, after all, is what the immune system mainly does. It seems plausible to me that if particular proteins coming in with the diet are not broken down properly, and if they can enter the bloodstream, the immune system will respond, and if this response cross-reacts with a normal protein in the body, there can be an autoimmune attack on part of the body's own metabolism or structure. That makes sense to me.

I think it is significant that correlations have been found between the HLA genotypes that people have inherited, and their susceptibility to particular autoimmune diseases. This suggests that if their antigen-presenting cells are not able to properly display fragments of certain proteins, they are vulnerable to developing particular autoimmune diseases. Again, note the protein involvement.

In ME/CFS, many people have intestinal permeability ("leaky gut syndrome"). This has been verified by some with the test that looks for it, involving the absorption and excretion in the urine of two sugars. The urobilinogen test developed by Dr. de Meirleir has also given evidence for leaky gut in many people with ME/CFS. It is generally believed that the large number of food sensitivities that many PWMEs have is due to leaky gut, because undigested protein fragments are able to pass from the lumen of the gut into the bloodstream. Usually the people develop IgG antibodies against these protein fragments, but not an autoimmune response. To develop an autoimmune response, I think there needs to be cross reactivity, and that apparently depends on the person's particular inherited genetics.

So I guess where I am at this point is that I am pretty open to considering your concept for autoimmune diseases, but I don't think ME/CFS is an autoimmune disease (except for the Hashimoto's component that many PWMEs have, and I think that occurs because hydrogen peroxide attacks thyroid proteins when glutathione goes too low in the thyroid gland).

You mentioned that you yourself had lupus, ME/CFS and fibromyalgia. Perhaps the latter two were secondary to the lupus, and the food-based treatment took care of the lupus, allowing the others to resolve. Do you know of any cases of "pure" ME/CFS that have been resolved by this treatment? I am aware of the case of the guy who developed the first nondenatured whey protein products. He reported that he was able to cure himself by drinking raw milk alone, and he attributed it to the cysteine in the raw milk, which helped the liver to produce more glutathione.

Anyway, please hang in there and tell us more. We need all the help we can get! As you know, I have a copy of your book, but have not yet been able to fully research all the papers whose abstracts you have cited.

Best regards,

Rich

 

[Annesse]

Hi Waverunner, all of the book reviews (except one) came from the international group I mentioned yesterday. Most of the members had first read the online version of the book before it came out as a hardbound. The exception to that is my neighbor who recovered from MS. I had not met her before I wrote the book. In my small town, we call anyone within a 5 mile radius "our neighbor". I gave her a copy of the manuscript when I heard she had MS. She is symptom free now. I don't post on the online group site as I mentioned. I have never met the people that do. There are people there from all over the world (South Africa, England, Australia) I thought it was extraordinary that the group was started in the first place. They are wonderful, kind people that found something that helped them. Many of the members have a medical background. Had it been a temporary fix, I don't think the group would still be here.

Hi Sianrecovery, I think the best way I can address the variations in CFS is through my own experience with CFS, fibromyalgia and lupus. I was first diagnosed with CFS and fibromyalgia. It wasn't until I got the "malar facial rash" that I was diagnosed with lupus. So here is my point. Not everyone that has lupus or that is diagnosed with lupus gets the malar rash. Only about 50% of the patients do. Even though, this symptom, (the malar rash) is what the disease lupus was named after. Jenny, I think that would address your thoughts also and I am speaking of ME/CFS when I say CFS.

Sianrecovery, some of the other conditions you mention are Medullary Sponge Kidney (which is congenital, correct?), Blastocytosis (we discussed how a lack of these enzymes could lead to parasitic infections as they are one the body's first lines of defense against bacteria etc.)

You also mentioned osteoporosis. Abnormal calcium metabolism due to an inability to carry protein-bound calcium would certainly play a role. As would a lack of intracellular free magnesium. We posted information on the MS thread about why and how this comes about if you are unable to digest proteins. Here is a study that shows how magnesium deficiency could lead to osteoporosis.

http://www.ncbi.nlm.nih.gov/pubmed/15637219

Also, here is a study that shows the connection to elevated homocysteine and lack of vitamin B12 (both of which can be directly linked to an inability to digest proteins) to osteoporosis.

http://www.ncbi.nlm.nih.gov/pubmed/20676649

I believe that there are many pieces to this puzzle. But if you focus on one "symptom" or "one puzzle piece" such as ME/CFS being caused by an immune system failure or a virus or bacteria, then you would need to be able to explain how that would lead to lack of phenylalanine, thyroxine ,dopamine, autonomic dysfunction, restless legs syndrome, dysregulated calcium and the many other factors that we have identified as also being pieces of this puzzle, known as ME/CFS.

 

[Annesse]

Hi Rich, we seem to have a knack for crossover posts. Let me get some caffeine and I will try and respond.

I would like to add one more "puzzle piece" that would need to be explained; the spinal tap study findings in CFS. Starting with the No. 1 finding; a protease imbalance.

 

[Valentijn]

If the problem is insufficient digestive enzymes preventing the absorption of proteins, wouldn't we be deficient in essential amino acids and their derivatives? Methionine is essential, for example, and is the precursor of homocysteine ... so wouldn't homocysteine be low?

My homocysteine tested high, combined with indications that my cysteine is low. This seems to indicate a deficiency in either a B vitamin or one of the two enzymes used to transform homocysteine into cysteine, or a glutathione deficiency or an excess of glutamate as causing a cysteine deficiency, rather than a simple inability to break down proteins.

 

[Waverunner]

If the problem is insufficient digestive enzymes preventing the absorption of proteins, wouldn't we be deficient in essential amino acids and their derivatives? Methionine is essential, for example, and is the precursor of homocysteine ... so wouldn't homocysteine be low?

My homocysteine tested high, combined with indications that my cysteine is low. This seems to indicate a deficiency in either a B vitamin or one of the two enzymes used to transform homocysteine into cysteine, or a glutathione deficiency or an excess of glutamate as causing a cysteine deficiency, rather than a simple inability to break down proteins.

Good point. Maybe Annesse can say something about it. I just wanted to throw in that lowering homocysteine with B vitamins did NOT reduce the incidence of cardiovascular events in studies that looked at this connection. Most studies used folic acid as part of the supplementation program but I don't know if this has to do with the negative outcome.

http://www.ncbi.nlm.nih.gov/pubmed/14762035
http://www.ncbi.nlm.nih.gov/pubmed/16531614
http://www.ncbi.nlm.nih.gov/pubmed/18460663
http://www.ncbi.nlm.nih.gov/pubmed/18714059

 

[Annesse]

Hi Valentijn, I did post some information on the lack of amino acids found in CFS and fibromyalgia on the MS thread. Here is some additional though.



Table 1. Base Amino Acid Formulation Table 2. Percentage frequency of amino acids below reference range in 25 CFS subjects
Amino Acid Percentage by weight Amino Acid Percentage
L-Valine 11.00 L-Histidine 0
L-Leucine 12.70 L-Valine 4
L-Isoleucine 9.40 L-Threonine 4
L-Phenylalanine 12.70 L-Lysine 8
L-Tryptophan 2.00 L-Methionine 20
L-Methionine 7.60 L-Arginine 24
L-Threonine 6.80 L-Leucine 52
L-Lysine 9.30 L-Isoleucine 60
L-Histidine 10.50 Taurine 64
L-Arginine 9.30 L-Phenylalanine 72

Pyridoxal-5-Phosphate 0.30
L-Tryptophan 80

Here is the source for the above information. http://www.metametrixinstitute.org/...with-Specific-Amino-Acid-Supplementation.aspx

I posted a study on the MS thread that identified the following amino acids lacking in fibromyalgia. Based on the spinal tap study results, I believe fibromyalgia and CFS are one and the same. The amino acids found missing were again: phenylalanine, taurine, valine, threonine, methionine, and tyrosine and alanine. Here is the study I posted.

http://www.ncbi.nlm.nih.gov/pubmed/19281806

As the study states, these amino acids were found to be "significantly lower".

If you lack phenylalanine for instance, you would not be able to produce tyrosine, dopamine, adrenaline, noradrenaline, or either of your thyroid hormones, thyroxine or triiodothyronine.
The lack of tryptophan would then lead to a lack of serotonin and melatonin.

These amino acids are found in high protein foods, as is vitamin B12. One of the most accurate tests for a vitamin B12 deficiency is elevated homocysteine.
Since CFS sufferers lack B12, I would expect that your homocysteine would be elevated. In fact, I did post some information on the MS thread about the lack of B12 and high homocysteine found in the cerebrospinal fluid of CFS and fibromyalgia patients. In addition, I think the recent cerebrospinal fluid studies on CFS also were very indicative of elevated homocysteine.

Rich is the expert in methionine. You might assume that your homocysteine would be lower if you lacked methionine, but that is not really the case. I am sure he could offer some insight as to why. If not, I will provide some information.

Hi Waverunner, I fully agree on the ability of supplemental B12 to change the course of disease. I was going to post some information on this myself. I believe that supplementation with amino acids, enzymes, or any of the nutrients found lacking due to a lack of proteases is futile and counterproductive. I have already posted some studies that show an increased risk of disease from the use of the amino acids, tyrptophan and phenylalanine. One of the pancreatic enzymes that has been identified as missing is DNase1. It does not come in a pill or a bottle. Enzymes are themselves proteins. CFS patients lack the ability to digest proteins. Taking them in an isolated form would not be beneficial, it would cause many of the same problems that led to CFS in the first place.

 

[richvank]

Hi, Annesse.

I think a key question is whether the lactic acid bacteria in sauerkraut are able to produce Dnase1. If so, I think that would make your hypothesis much stronger. I don't know if this has been studied. I couldn't find anything on it in PubMed.

Incidentally, Dnase1 does come in a bottle. It has been produced as a recombinant (Pulmozyme), and is FDA-approved for the treatment of cystic fibrosis, for which it is given by nebulizer. The reason this works is that the mucus that clogs up the lungs in cystic fibrosis is high in DNA from the breakdown of neutrophils, and the DNA contributes to the viscosity of this mucus. I realize that it would be heresy from your point of view, but I wonder if this would help in autoimmune diseases if given orally. Sorry about that! Just curious.

Best regards,

Rich

 

[richvank]

Hi, Annesse.

I think a key question is whether the lactic acid bacteria in sauerkraut are able to produce Dnase1. If so, I think that would make your hypothesis much stronger. I don't know if this has been studied. I couldn't find anything on it in PubMed.

Incidentally, Dnase1 does come in a bottle. It has been produced as a recombinant (Pulmozyme), and is FDA-approved for the treatment of cystic fibrosis, for which it is given by nebulizer. The reason this works is that the mucus that clogs up the lungs in cystic fibrosis is high in DNA from the breakdown of neutrophils, and the DNA contributes to the viscosity of this mucus. I realize that it would be heresy from your point of view, but I wonder if this would help in autoimmune diseases if given orally. Sorry about that! Just curious.

Best regards,

Rich

I did a little more digging. Doesn't look like bacteria make Dnase1. However, both Strep and Staph bacteria make other nucleases that are able to break down DNA. Perhaps the lactic acid bacteria in sauerkraut make nucleases that can substitute for Dnase1 in a person who has a deficiency in it.

Rich

 

[Annesse]

Hi Rich, "heresy" lol! You've got my number. I based my statement about DNase 1 on the discovery of the lack of this protease (DNase 1) as being a causative factor of lupus. The German researchers that make the discovery are hard at work trying to engineer a "fake" Dnase 1. If this was already available in the form they felt would break down the proteins and DNA found in a lupus patients bloodstream, I am sure they would be aware of it. Here is some additional information on how the lack of this protease led to lupus in mice also.
http://findarticles.com/p/articles/mi_m1200/is_24_157/ai_63323324/

I think it may be a good time to stop and take a look at the connections that we have made so far. Here is a list of symptoms and conditions that are a direct result of a lack of proteases. They are also the exact same symptoms and conditions found in ME/CFS. I still intend to show the connection to more conditions and symptoms, but here is what we have so far. If someone is unclear as to how a lack of proteases would lead to these conditions, please let me know.

Lack of:

Vitamin B12
Vitamin D
Iron
Zinc
CoQ10
Adrenaline
Noradrenaline
Thyroxine
Triiodothyronine
Magnesium
Dopamine
Melatonin
5-HTP
Carnitine
Amino Acids
Acetylcholine
Dysregulated Calcium
Osteoporosis
Mitral Valve Prolapse
Connection to Adrenal Fatigue
Connection to Hypothyroidism
Autonomic Nervous System Dysfunction
Primary Biliary Cirrhosis
Heart Failure
Spinal Cord Degeneration
Migraines
Vision Problems
White Matter Lesions
SIBO (Small Intestine Bacterial Overgrowth)
Pheripheral Neuropathy
Elevated Tumor Necrosis Factor
Amyloids (CFS Cerebrospinal Fluid Study Finding)
Mitochrondrial Dysfunction
Anemia
Arthritis
Restless Legs Syndrome



Of course the fatigue, insomnia, anxiety, depression, confusion, muscle pain, and all of the issues that would result from dysautonomia, such as bladder problems, dizziness, blood pressure problems, temperature regulation problems etc. found in ME/CFS would stem from the symptoms and conditions listed above.