Rich, HELP! CONFUSED about a few things...

Discussion in 'Fibromyalgia Main Forum' started by Godismystrength, Aug 23, 2012.

  1. Hi Rich,

    I just came across Annesse's thread called "A Possible Explanantion" and I have a few questions for you:

    First: Are Digestive Enzymes harmful for those of us with CFS/ME? I've been taking enzymes for years now, and Annesse's statement that it is doing more harm than good is troubling, to say the least. I thought that my digestive enzymes were helping me break down proteins, fats and carbs to optimize nutrient uptake? A homeopath put me on these enzymes years ago (this is before I had the diagnosis of ME/CFS). I take "Super Enzymes" by NOW, which has:
    -Betaine HCl - 200mg
    -Pancreatin 4X - 200mg, supplying Amylase(20,000 usp units) ,
    Protease(20,000 usp units) and Lipase (3,400 usp units)
    -Ox Bile EXtract (45% Cholic Acid) - 100mg
    -Bromelain - 50mg
    -Papain - 50mg
    -Pepsin - 50mg
    -Papaya Fruit Powder - 45mg
    -Pineapple Juice Powder - 45mg
    -Cellulase Powder - 10mg

    Second: Are probiotics harmful as well? Again, I always thought they were helpful to replenish the good bacteria in our intestines and thereby restore balance and help our immune system. I've been taking "Kyo-Dophilus" for many years.

    Third: Annesse also mentions a B-12 deficiency as part of the problem in ME/CFS. I take a sublingual B-12 (3000 mcg/td). Shouldn't that correct the B-12 deficiency? My sublinngual also includes 400 mcg of Folic Acid, and 50 mg of Vit. C, as ascorbic acid.

    Fourth: I see that iron is mentioned as important. However, I started taking a multivitamin WITHOUT iron a while ago because I had gleaned some info from a patient on Dr. Cheney's protocol that said we should NOT have iron or copper in our supplements. I can't remember why he advised that now. But could that be a mistake? Do I need to include iron in my supplements? If so, how much?

    Fifth: You mentioned that you don't believe that ME/CFS is an autoimmune disease. Can you explain your view on that? I thought that both, fibromyalgia (which I also have) and ME/CFS were autoimmune diseases. I thought that is what is meant in the name "Chronic Fatigue Immune Dysfunction Syndrome", also known as CFIDS? Could you clarify that for me?

    I know there are many theories out there as to what causes ME/CFS and how to classify it. I know that the World Health Organization considers it a neuro-endocrine-immune disorder/disease. Do you agree with that? I also would like to know your thoughts on what you think of the CDC's desription and explanation of ME/CFS. I don't feel like the CDC is as accurate in their description as they should be, which can lead to misconceptions about ME/CFS. I'm hoping that will change and be amended at some point.

    Also, do you know what Annesse's credentials are? Is she a doctor, by any chance? Thanks so much, Rich, for any insight you can give me!! I appreciate it more than I can say!

    God Bless,
    Shel

  2. richvank

    richvank New Member


    Hi, shel.

    I wrote the following in response to your original post, before you deleted it.
    I'll add another post to respond to the other issues you raised.

    Hi, shel.

    I have a copy of Annesse's book "Autoimmune: the Cause and the Cure," and I have corresponded with her on the Phoenix Rising forums and by emails. I think that she has put forward a very plausible hypothesis for treating systemic lupus erythematosus (SLE), which is what she initially had. However, I do not agree with all of her thinking, particularly where it concerns treatment of ME/CFS, and where she insists that only natural, particularly fermented, foods should be used to supply nutrients, to the exclusion of supplements. I have shared my views with her, and we have agreed to disagree.

    Here is the part of her thinking which I believe is likely valid:

    She promotes the use of raw, organic sauerkraut and other raw, organic, naturally fermented foods for the treatment of SLE.

    Research has shown that people who have SLE have a deficiency or an autoimmune reaction against the natural enyzme Dnase1, which is normally in our blood, and which helps to break down DNA from dead neutrophils after they have responded to an infection or other need for inflammation. People who do not have this enzyme functioning normally develop SLE, and it flares after they have had inflammation from whatever cause. This results from the immune system's response to the debris that has not been cleared.

    Sauerkraut has large amounts of lactic acid bacteria, especially Lactobacillus plantarum. This bacteria makes other nuclease enzymes than the human Dnase1, and when sauerkraut is consumed, some of these enzymes are able to enter the blood. I think they are able to substitute for the missing Dnase1 and help to clear up remnants of inflammation, thus stopping the SLE.

    This makes sense to me, and I believe this is why Annesse herself was helped by eating fermented foods.

    Annesse has gone on to claim that this is an effective treatment for other autoimmune diseases, including rheumatoid arthritis. Perhaps it is, but this is less clear to me. I think she has some testimonials from people who say that they were helped with other autoimmune diseases, so maybe so.

    Annesse has also gone on to claim that this treatment is the cure for ME/CFS.
    I don't know of evidence for this. There is an autoimmune component to ME/CFS, but it is not fundamentally an autoimmune disease.

    I think a few PWMEs have tried eating sauerkraut after hearing from Annesse, but I haven't heard from any who reported that it cured them. I do think that there are some beneficial things in fermented foods that can help in ME/CFS. There is lactic acid, which can help to augment stomach acid, which is low in ME/CFS. There are enzymes that can help to digest food. There are beneficial bacteria, which can help to counter dysbiosis, also common in ME/CFS. There are probably some vitamins and minerals as well. Fermented foods have been advocated in the past by Donna Gates, who wrote "The Body Ecology Diet," and by Jordan Rubin, who started Garden of Life and has written some books as well.

    One concern with fermented foods in ME/CFS is that they may contain too much free glutamate, and may provoke excitotoxicity. I note that Amy Yasko recommends avoiding all fermented foods in treating autism, and ME/CFS is closely related to autism biochemically.

    I think that there are many digestive enzyme supplements that can be very helpful, as well as many other types of supplements that can. I think it's true that it's best if we get most of our nutrition from natural foods, but there are cases in which supplements have an important role to play. Prof. Bruce Ames and coauthors reported several years ago that some people need much more of certain nutrients than the average, because of their genetic makeup. Supplements are probably the only way to get large enough dosages in these cases.

    In ME/CFS, there is a functional B12 deficiency. To overcome it, I think it is necessary to take large dosages of B12 supplements, either sublingually or by injection. Natural foods taken orally will not get enough into the blood to overcome this problem, as far as I can tell.

    Annesse searched for years on her own to find a cure for her illness, and eventually found that fermented foods worked for her. Like some other people who have been through a long search and found the answer for them, she has extrapolated this and applied it to many other cases, in my opinion to a wider variety of cases than is actually valid. But I am willing to be proven wrong, and I think that Annesse is helping a lot of people.

    She and her daughter, who coauthored the book, give talks in the areas where they live (South Dakota and Colorado, respectively) and beyond. Even if the treatment is helpful only for SLE, it is still a big advance, and a wonderful thing for people who have that disorder. So I have encouraged Annesse to keep spreading the word, at least that part of it, while I continue to disagree with applying it as widely to other disorders as she does.

    I hope this helps.

    Best regards,

    Rich
  3. richvank

    richvank New Member

    Hi, shel.

    I think that digestive enzymes, probiotics, and sublingual B12 are fine, and can be very helpful.

    Regarding iron and copper, it depends. First, iron is an essential mineral, which we all need. Women of reproductive age have a particular need for iron to prevent anemia, because of their monthly loss of some iron. I think it's wise, particularly for these women, to have a ferritin measurement periodically, and to keep ferritin well up in its reference range by supplementing if necessary. I favor supplementing with lactoferrin if iron is low, because that will prevent the unfriendly bacteria in the gut from getting iron, which will help to control their populations.

    Copper is also an essential mineral that we all need. I find copper deficiencies in PWMEs frequently, so I recommend testing and supplementing if it is low. Copper should be supplemented with zinc to keep them in the right balance. The dosage of zinc should be 10 or 15 times as high as the copper dosage, in milligrams.

    In the Simplified Methylation Protocol, I have suggested using Amy Yasko's multi. It does not contain iron or copper, and this can be a problem for people who are low in them. I have not found another multi that offers the other advantages of the Yasko multi, though. So testing is a good idea.

    The reason for the concern about iron and copper is that they each have two oxidation states, so that if they are present as free, unbound ions, they can participate in Fenton reactions, which produce the damaging hydroxyl free radicals. This only occurs if they are unbound, however, and normally they are bound, unless present in excess.

    Regarding ME/CFS and autoimmunity, we know that Hashimoto's autoimmune thyroiditis is common in ME/CFS. We also know that low levels of a variety of other autoimmune antibodies have been found in ME/CFS patients. However, I believe that these arise from the immune system's response in cleaning up damaged molecules and cells as a result of glutathione depletion and oxidative stress. There is not one autoimmune antibody or a small number of them that is always found to be elevated, such as there are in the recognized autoimmune diseases.

    I realize that the recent work with Rituximab in Norway has caused some people to conclude that ME/CFS is an autoimmune disease. However, I think that what has gone on in the cases that recovered from this treatment is that the Rituximab, by knocking out the B cells temporarily, lowered the ongoing inflammation caused by the immune response to infections and allowed glutathione to come up, overcoming the vicious circle mechanism involving the partial methylation cycle block, and restoring the immune system to normal function.

    In ME/CFS, the immune system is dysfunctional, but that is not the same as autoimmunity. In ME/CFS, the cell-mediated immune response does not work properly. This is the response needed to overcome intracellular infections, such as viruses and intracellular bacteria, and that's why these infections persist in ME/CFS. I believe that the vicious circle mechanism involving glutathione depletion, the partial methylation cycle block, and loss of folates from the cells is the reason for the immune dysfunction in ME/CFS.

    It's true that in ME/CFS, the nervous system, parts of the endocrine system, and the immune system are affected. In addition, the skeletal muscles and the heart muscle are also affected. However, the fundamental cause of these problems is in the basic biochemistry, involving glutathione, vitamin B12, the methylation cycle, and the folates. The reason why these systems and organs are the ones involved in producing symptoms is that they do not have the capability of making cysteine readily from methionine, so that they go low in cysteine before other parts of the body do, and that limits their ability to restore their glutathione. Low glutathione leads to the problems in these systems and organs.

    I don't believe that the CDC has it right yet. I have had some good interactions with the CDC scientists, though, and they are familiar with my model. I hope that in the future they will agree with me. Time will tell.

    Annesse is a self-taught herbalist and natural healer. She does not have formal education or credentials in the biomedical sciences. Her daughter, with whom she coauthored her book, did attend Bastyr naturopathic college, but I don't know if she graduated or became a naturopathic doctor. I don't think so.

    Again, I think that they have made an important advance in the treatment of SLE, and I wish them well in spreading the word about this. I don't regard it as scientifically proven, but I think it is very plausible that they are right about the benefit of fermented foods in treating this disorder, and I believe that Annesse is telling the truth about her own personal experience with this.

    Best regards,

    Rich
  4. Thank you for all this wonderful info and insight! So would it be safe for me to include SOME fermented foods in my diet, like sauerkraut? I'm assuming it would have to be raw and not cooked, right?

    That was something else that confused me about Annesse's posts... she mentioned the necessity of eating meat and shellfish for certain enzymes. But wouldn't they have to be eaten raw, since I thought that cooking basically neutralizes the enzymes?

    Also, is there a supplement for cysteine that would be helpful to take? And what form of glutathione do you reccomend? Years ago, I traveled 6 hours round trip, every other week, for glutathione by I.V. and vitamin and mineral injections. I did this for 6 months straight, because I was so desperate to get well. This was even before I got the CFS/ME diagnosis. I was looking for an alternative med. doctor because traditional docs were no help. Her diagnosis at the time was: malabsorption, hypoglycemia, adrenal burn-out and low blood pressure, among other things. Now, in hindsight, I know that these are all partial symptoms of ME/CFS. That doc never mentioned CFS/ME, but it seems she was on the right track with her treatment. She was an alternative doctor, and while her treatment DID help, it didn't seem to help as much as I would have liked... perhaps because I could only go every other week, rather than weekly. And now, all these years later, I wouldn't be able to do the traveling because my CFS/ME is much worse. So, is there a sublingual for glutathione I should look into for better absorption? Right now, I take a capsule that is "Reduced L-Glutathione" 250 mg/ 2d (it says it is "Free Form").

    Also, I used to take a protein powder years ago, called "Iso-Soy" that had a ton of amino acids, as well as 20 grams of protein. I stopped taking it at one point because I was concerned that the soy was messing up my estrogen levels. But I did seem to feel better when I was on it. Any thoughts on this?

    And is there a diet that has shown to be helpful for folks with ME/CFS? I know it's best to eat alot of raw fruit and vegetables, but sometimes I don't think I'm getting enough protein in my diet, and wonder if that's making me feel worse. I also try to limit grains, and don't eat wheat. I eat only spelt bread or millet and flax bread when I do eat bread. Also, I eat brown rice occasionally.

    Sorry to bombard you with questions, Rich! But I feel like I'm trying to work through this maze of information with a brain that doesn't work as well as it used to. I so wish I had a doctor who could look at my particular situation and help me sort this all out and give me some guidance! But I do thank you, Rich, for the help you give!

    By the way, since I haven't been on this board very long, would you mind telling me your credentials? I would think you are either a doctor or scientist because you seem so knowledgable about the physiology of the human body.

    Again, I can't thank you enough, Rich! God bless you!

    Shel
  5. Just wanted to be sure you got a chance to see my reply I posted yesterday to your responses.... thanks again so much! You are much appreciated, Rich!

    God Bless,
    Shel



  6. mbofov

    mbofov Active Member

    I don't know anything about Annesse's posts but have just a few comments in general:

    From what I've read, and in my own experience, people with CFS/ME tend to be deficient in protein - we need a lot of it, more so than the average person. I don't know if this is due to a defect in protein metabolism or production or utilization, but it's there. A very good alternative to soy protein is whey protein. I wouldn't take the soy either. Raw fruits and vegies are good but you probably are not getting enough protein. I have protein with each meal.

    Re malabsorption - I found several years ago (with the aid of a chiropractor) that I needed to take hydrochloric acid with meals, particularly meals high in protein, so I do, and my digestion is much better. Digestive enzymes alone were not enough.

    Dr. Sarah Myhill in the UK, who knows a LOT about CFS, recommends the caveman or paleo diet for her CFS patients - if you google "caveman diet", you'll find a lot of info. And if you google Sarah Myhill, you'll find her website which has a ton of good information.

    re glutathione - my doctor has me taking something called acetyl-glutathione. I haven't noticed any difference since taking it, though it is supposed to be able to be utilized by the body, unlike other oral forms. Unforetunately, it is rather expensive - about $70 on-line for sixty 100 mg. tablets - I don't know if I'm going to keep taking it.

    re raising glutathione - have you looked into Rich's methylation protocol?

    re weak adrenals - my chiro got me taking an adrenal glandular from Standard Process, Drenatrophin PMG or Drenamin, both are good and both helped a lot. Also extra pantothenic acid.

    You might want to look at acam.org - a website for integrative medicine doctors who tend to know the most about CFS - if you scroll over "health resources" near the top of the page, you'll find a link where you can search for practitioners in your area.

    Mary
  7. richvank

    richvank New Member

    ***Hi, GIMS.

    Thank you for all this wonderful info and insight!

    ***You're welcome.

    So would it be safe for me to include SOME fermented foods in my diet, like sauerkraut? I'm assuming it would have to be raw and not cooked, right?

    ***I think it would be worth trying, and yes, it should be raw, uncooked, and organic is best. If you develop symptoms of excitotoxicity from too much glutamate (anxiety, insomnia, and a "wired" feeling), then stop. Otherwise, it will probably help you.

    That was something else that confused me about Annesse's posts... she mentioned the necessity of eating meat and shellfish for certain enzymes. But wouldn't they have to be eaten raw, since I thought that cooking basically neutralizes the enzymes?

    ***I agree that eating meat is a good idea, but not raw meat. If you can get grass-fed beef, it's better than beef raised in a feedlot. Shellfish from a good source is O.K., but again, not raw. Note that shellfish can carry some diseases if it is not from a good source, though.

    ***As I wrote before, I don't agree with Annesse on everything she has written, but I do think that she has made an important contribution.

    Also, is there a supplement for cysteine that would be helpful to take?

    ***If you can tolerate nondenatured whey protein products, such as ImmunoPro, RenewPro, True Whey, or Whey to Health, those are good sources of unoxidized cysteine. The whey protein isolates, called "undenatured," are not as good, because the cysteine has been oxidized to cystine. The liver absorbs cysteine well, but not cystine.

    ***If you don't have a high body burden of mercury, NAC is O.K., too.

    And what form of glutathione do you reccomend? Years ago, I traveled 6 hours round trip, every other week, for glutathione by I.V. and vitamin and mineral injections. I did this for 6 months straight, because I was so desperate to get well.

    ***I encouraged people to do direct boosting of glutathione from 1999 through 2004. It gave some people temporary help, but it was not a permanent fix for low glutathione. I learned in late 2004 that it is necessary to lift the partial methylation cycle block to bring glutathione up more permanently. It's O.K. to try adding some glutathione while on the methylation treatment, if it helps. The best forms are the liposomal glutathione products or acetyl glutathione. Ordinary oral glutathione is mostly broken down in the gut.

    ***Recently, I have suggested that people try L-cystine (not the same as L-cysteine) to get cysteine into the brain to counter the excitotoxicity that many people experience on the methylation treatment. L-cystine will cross the blood-brain barrier, and it is normally the main source of cysteine to make glutathione in the brain. I haven't received feedback on this yet. If a person has a high mercury body burden, it's best not to take L-cystine, though, because it can move mercury from the body into the brain.

    This was even before I got the CFS/ME diagnosis. I was looking for an alternative med. doctor because traditional docs were no help. Her diagnosis at the time was: malabsorption, hypoglycemia, adrenal burn-out and low blood pressure, among other things. Now, in hindsight, I know that these are all partial symptoms of ME/CFS.

    ***That's true.

    That doc never mentioned CFS/ME, but it seems she was on the right track with her treatment. She was an alternative doctor, and while her treatment DID help, it didn't seem to help as much as I would have liked... perhaps because I could only go every other week, rather than weekly. And now, all these years later, I wouldn't be able to do the traveling because my CFS/ME is much worse. So, is there a sublingual for glutathione I should look into for better absorption? Right now, I take a capsule that is "Reduced L-Glutathione" 250 mg/ 2d (it says it is "Free Form").

    ***See above.

    Also, I used to take a protein powder years ago, called "Iso-Soy" that had a ton of amino acids, as well as 20 grams of protein. I stopped taking it at one point because I was concerned that the soy was messing up my estrogen levels. But I did seem to feel better when I was on it. Any thoughts on this?

    ***See above on whey protein. Whey has a better distribution of amino acids for humans than soy does.

    And is there a diet that has shown to be helpful for folks with ME/CFS? I know it's best to eat alot of raw fruit and vegetables, but sometimes I don't think I'm getting enough protein in my diet, and wonder if that's making me feel worse. I also try to limit grains, and don't eat wheat. I eat only spelt bread or millet and flax bread when I do eat bread. Also, I eat brown rice occasionally.

    ***Most PWMEs do best on a high-protein diet. I think the reason is that carbs and fats cannot be used very well by the Krebs cycle, because of a partial block of aconitase, early in the cycle, due to glutathione depletion. Protein is broken down into amino acids, which can be converted from one to another fairly readily (unless you have deficiencies in some of the B vitamins), and they can be fed to the Krebs cycle downstream of the partial block, especially if you are doing the methylation treatment, which supplies B12 for making adenosylB12, which feeds the Krebs cycle via the methylmalonate pathway.

    Sorry to bombard you with questions, Rich! But I feel like I'm trying to work through this maze of information with a brain that doesn't work as well as it used to. I so wish I had a doctor who could look at my particular situation and help me sort this all out and give me some guidance! But I do thank you, Rich, for the help you give!

    ***You're very welcome.

    By the way, since I haven't been on this board very long, would you mind telling me your credentials? I would think you are either a doctor or scientist because you seem so knowledgable about the physiology of the human body.

    ***The fact is that I'm a quack! :)-) I don't have any formal credentials in the biomedical sciences. I do happen to have a Ph.D. degree in engineering and the applied physical sciences, so yes, I am an applied scientist. I got interested in ME/CFS about 16 years ago because one of our friends at church developed a case of it, and her doc said there was no treatment for it. I thought it would be easier to figure out than it has been, and I got some biochemistry and physiology textbooks and started studying. I joined ME/CFS internet groups, started going to conferences of the AACFS (now the IACFS/ME), got involved with some clinicians who treat it, and started studying the published research papers. Eventually I started to develop a hypothesis for ME/CFS, and I have continued to modify it as I have learned more from ongoing research. I actually think it corresponds pretty well with what is known about ME/CFS now, and the treatment based on it has been helping quite a few people. There is still more to be done, though, to get everyone to complete recovery. I'm focusing on the immune system these days, because I think the remaining problems involve infections and the immune system, primarily.

    Again, I can't thank you enough, Rich! God bless you!

    Shel

    ***You're welcome, and I hope He will bless you, too, Shel.

    ***Best regards,

    ***Rich
  8. sk8ter

    sk8ter New Member

    Dr. Rich, You had given me your contact enough somewhere on here but I cant find it.I just got my Yasko tests back and would like to talk to you about them..How do I get your info...My LLMD knows you but I will not post name here...
  9. richvank

    richvank New Member

    Hi, sk8ter.

    I just rechecked the board rules, and they don't allow posting email addresses.
    Sorry to have to play games with you, but you could Google me and find something I've written that has my email address on it, or you could find me on Facebook or Phoenix Rising. Both Facebook and Phoenix Rising provide for private messaging.

    Best regards,

    Rich Van Konynenburg

  10. I can't thank you both enough for the valuable info! Y'all are a Godsend! I'm under the gun right now, though, as I will probably have to evacuate because of this storm, Issac, which is suppose to be a category 2 hurricane by the time it reaches my town... It seems to be heading straight for us! Need prayer! Thanks again, so much, Mary and Rich! You are both such blessings! God bless you both!

    Shel
  11. mbofov

    mbofov Active Member

    I hope Isaac downgrades by the time it reaches you! Take care and keep us posted -

    Mary
  12. Annesse

    Annesse Member

    Hi Godismystrength ~ I hope you are safe. I just thought I could clarify a few things. I do think it is important to eat proteins that contain B12, such as pastured meat and shellfish, which has the highest levels. I recommend them for the B12, not the enzymes. I didn't want you to think I was saying to eat raw meat or fish.

    Also, the iron could be a problem if you lack protease. Protease regulate iron absorption. Without them, you would not be able to release iron from the cells. I made some posts on a cancer forum that explains the connection to the inability to properly metabolize iron and cancer. Here is a link if you would like to check it out. http://www.cancerforums.net/threads/23435-Breast-Cancer-and-Autoimmune-Disease

    I also think the information on lymphoma from the cancer thread is relevant in light of the recent information posted on this site about the increased risk of lymphoma in CFS patients.

    Thank you Rich~gracious and kind as always. My premise is that every symptom of CFS and fibro can be traced directly back to protease and DNase1. Also, every valid scientific finding. I think this information is making some serious traction in the fibromyalgia and CFS community. The founder of the Fibromyalgia Coalition International (Yvonne Kenny) read the book and is convinced this is the source of CFS and fibromyalgia. She had someone come to her group meeting in Kansas City last week and teach everyone how to make kefir. She is a well respected authority on CFS and fibromyalgia and has made some guest blogs here, I believe, and on Phoenix Rising. She has asked me to write a feature article for her fibromyalgia magazine next month.

    I have enjoyed our conversations and know we will both continue to share our discoveries in order to help all we can.
  13. richvank

    richvank New Member

    Hi, Annesse.

    It's good to hear from you again! I'll be interested to hear how the fibromyalgia people do on the kefir.

    Best regards,

    Rich