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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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The difference between MS and ME

Discussion in 'Neurological/Neuro-sensory' started by Lee Ann, Nov 27, 2011.

  1. xchocoholic

    xchocoholic Senior Member

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    I have a freind who's dystonia was linked to gluten. She couldn't even walk into a
    bakery without becoming symptomatic.

    The article you posted mentioned celiac disease but damage to the brain can occur
    without damage to the intestines. Sorry if you already knew that ..

    Theglutenfile is full of medical studies, doctor's names etc on this ..

    Gluten is known to act like an opioid in some people. Casein is too. It sure does a number on me .. :D

    Tc .. X
     
  2. Annesse

    Annesse Senior Member

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    These are some really great posts! Thanks everyone. I want to first address the white matter lesions. Fire, these are really the same ones that are found in MS. They are called white matter lesions because of their color. The whiteness is caused by the myelin sheath that covers the axons. "White matter lesions can be seen in numerous other conditions, " as is stated by the following information. I think this information is good because it explains how the diagnosis of MS is made. (It is not based on the presence of white matter lesions alone.) All of the studies I posted had the exact same white matter lesions that are found in MS. A B12 deficiency can lead to white matter lesions as the study I posted shows. It is very interesting that these diseases all show a severe lack of B12 and the inability to digest proteins (as in Celiac disease). Celeac is the one autoimmune disease that we know (up until now) what causes it. It is the inability to digest gluten. Gluten is a protein. Celiac patients also have a B12 deficiency. You can access this study online: "Low Serum Vitamin B12 is Common in Celiac Disease and is not due to Autoimmune Gastritis." White matter lesions can be found in Celiac patients. What causes them? My belief is the lack of B12 found in all of the diseases we have been discussing. Here is the MS information. I want us all to be on the same page. If something isn't clear or I am just dead wrong, please do question me.

    http://braindiseases.wordpress.com/2008/05/15/mri-white-matter-lesions-does-it-represent-ms/
     
  3. Annesse

    Annesse Senior Member

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    Here is some more information on the connection to the myelin damage in MS and B12. The title says it all. "Vitamin B12, demyelination, remyelination and repair in multiple sclerosis."

    Jenny, that was a very insightful post. So far, we have been able to trace all of the missing hormones and neurotransmitters found in these diseases back to Phenylalanine. We have also shown a lack of tyrosine, tryptophan and other essential and nonessential amino acids. If you are missing them, then perhaps your first impulse would be to just take them in supplement form. Where does phenylalanine come from though? Phenylalanine is found in HIGH PROTEIN foods. Foods like eggs, meat, fish and dairy. These are also the same foods that contain B12. Is this just a coincidence? Is there evidence that in autoimmune disease and associated diseases that we are unable to break these proteins down? Just the fact that we lack B12, phenylalanine, and the hormones and neurotransmitters that are directly derived from them is evidence. Jenny has provided additional evidence. Here is a study that shows the inability to "metabolize" phenylalanine and tyrosine are connected to Collagen diseases. (Sorry, I couldn't access the full study) I will also find and post one on tryptophan. The NETs found in Lupus are also futher evidence. These NETs are comprised of DNA and protein fragments. We will be providing additional evidence as we move forward.

    http://archderm.ama-assn.org/cgi/content/summary/77/3/255

    So, if you are are unable to digest proteins, taking the amino acids of which the proteins are comprised may actually lead to an increased risk of disease.
    Restoring your body's ability to digest proteins would allow you to release these essential amino acids and B12. This would in turn alleviate many of the symptoms that arise because of their absence.
     
  4. Annesse

    Annesse Senior Member

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    Lying at the very center of your body's ability to create energy is your mitochondria. Mitochondria are structures that are found inside virtually every cell in your body. They are the 'power houses' of the cell. One of the most essential substances for the mitochondria is carnitine. Carnitine is a critical compound your body produces using DIETARY AMINO ACIDS. It is used by the mitochondria of cells to produce energy and in the export of toxic waste materials from the cell. Your body manufactures carnitine from the essential amino acids lysine and methionine. As sited in the previous study, methionine was one of the amino acids fibromyalgia patients lacked. Methionine is also found in HIGH PROTEIN FOODS.

    Low levels of the carnitine compound acylcarnitine in the blood or muscles of people with CFS/FMS have been found in numerous studies. I can post some if anyone would like to see them.
     
  5. Annesse

    Annesse Senior Member

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  6. aprilk1869

    aprilk1869 Senior Member

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    No I didn't know, I've not really read up on celiac disease.

    The thing is that my Mum was diagnosed with MS but the diagnosis was done in just 2 weeks. I've read of people waiting months or years to get a diagnosis. Her symptoms started with double vision, headache, nausea and fatigue which came on suddenly. Extreme debilitating fatigue lasted 6 months. Recovery has only ever been partial.

    When I started researching the nervous system earlier this year because of my dad I read about how b12 deficiency can mimic MS. So I automatically thought that her symptoms were brought on because she was on a very low fat vegetarian diet and exercised excessively. That probably didn't help but maybe she's also got other problems which have never been investigated.

    Fairly early on during her illness (after the worst had passed) she went on a wheat-free diet and got colonic irrigation. One day she decided to treat herself to a single slice of garlic bread and when she went for another session the therapist could tell she'd eaten some bread. I don't know how. If I remember correctly, she was doing very well at that time.

    On the female side of the family there's diabetes type 1, Alzheimer's, oseoarthritis, carpal tunnel syndrome, IBS, depression and I've had problems in the past with raynaud's. Seemingly these conditions can all tie in with celiac disease.
     
  7. Jenny

    Jenny Senior Member

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    Hi Annesse

    I'm finding your posts a little difficult to follow:D Are you saying that it's likely that ME patients (like MS patients) have problems digesting proteins? And that we need somehow to restore our ability to digest them (but not by taking amino acids as that may be harmful)?

    If so, how do we restore this ability?

    When you say 'we will be providing evidence', who is the 'we'? (Sorry I may have missed something you said about your background.) Are you a researcher doing work on MS and ME?

    Jenny
     
  8. Jenny

    Jenny Senior Member

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  9. xchocoholic

    xchocoholic Senior Member

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    Hi april,

    If you look at theglutenfile, it will explain how gluten affects other parts of the body than
    just the celiac section of the digestive tract.

    Your mother's symptom list you gave didn't include myelin damage. Fwiw tho, our
    Medical community will tell you it takes an average of 11 years, yes that's right, 11 years
    for someone to be diagnosed as a celiac. They also freely admit this is due to their incompetence. $$$

    I'm not sure what kind of therapist your mother went to that could tell she'd eaten wheat. Well nothing other than her gut being inflamed ..

    Fwiw, my b12 was in the 200 range after many of my symptoms had already vanished from changing my diet.

    A gfcf etc diet that elminated my food intolerances is mostly what worked for me. I was tested and found deficient in a variety on nutrients. So, I've taken supplements for years and some helped but not enough. Now,
    I'm looking much closer at ALL nutrients, including minerals and aminos, and hormones.

    tc .. X
     
  10. Annesse

    Annesse Senior Member

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    Hi Jenny, Yes, I believe that CFS patients are unable to digest proteins. I also believe this is true of MS, fibro, type 2 diabetes, Myathenia Gravis, hypothyroidism, raynauds, lupus, Rheumatoid arthritis etc. These separate diseases are really just symptoms of the inability to digest dietary proteins. That is one reason they all overlap. For instance, I posted that "an estimated 85% of CFS sufferers also have hypothyroidism." Here is some information that shows how common hypothyroidism is in Celiac disease. I am not saying that Celiac disease causes hypothyroidism or CFS. What I am saying is they are all caused by the same thing. The inability to digest proteins. http://www.celiac.com/articles/1135...Disease-and-Hashimotos-Thyroiditis/Page1.html

    Here is some additional information on Celiac and Associated Disorders. http://www.celiac.com/categories/Celiac-Disease-Research:-Associated-Diseases-and-Disorders/

    You will notice that all of the diseases we have been discussing are on this list. We have already provided a great deal of evidence that these diseases originate with the inability to break down proteins. (such as tracing all of the missing neurotransmitters and hormones back to phenylalanine which is found in high protein foods.) Now take Rheumatoid arthritis for instance, which is also on the list. How would the inability to digest proteins be connected to arthritis? We have already shown that homocysteine is dysregulated in arthritis. Homocysteine would rise from lack of B12. B12 is only found in dietary animal proteins. Also, tumor necrosis factor causes the heat, redness and swelling in arthritis. Very soon, we will provide evidence that shows the same thing responsible for the binding and transport of B12 also regulates tumor necrosis factor.

    Here is some additional evidence on the connection to the inability to digest proteins and arthritis. Lita Lee, Ph.D., a chemist and enzyme nutritionist explained the connection well when she wrote, "All forms of arthritis involve abnormal calcium metabolism. Ninety-nine percent of the body calcium is (or should be) in the bones and teeth. The other one precent, found in the blood is just as important because it is essential in the blood clotting mechanism, muscle and nerve function, VITAMIN D FUNCTION, and the function of the hormones that control calcium metabolism (called parathyroid hormones). Of the one percent of calcium in the blood, half is PROTEIN BOUND, and half is ionized. BOTH REQUIRE ADEQUATE PROTEIN DIGESTION. IF YOU ARE DEFICIENT IN PROTEIN BECAUSE YOU CAN'T DIGEST IT, YOU CANNOT CARRY PROTEIN-BOUND CALCIUM. If you lack optimum acidity from inadequate digestion of protein, you will not have enough ionized calcium. In either case, you are a candidate for arthritis."

    You asked about my background and why I say we. When I say "we" I am referring to myself and my daughter. Our book, "Autoimmune The Cause and The Cure" just came out about 6 weeks ago. We both have been very busy doing speaking engagements on the findings in the book. I had one today at our local college. I was diagnosed with lupus, CFS and fibromyalgia about 20 years ago. I have completely recovered. We will get to the recovery portion as soon as all of the evidence is presented.
     
  11. Annesse

    Annesse Senior Member

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    PS- I guess I should have pointed out that the inability to carry protein-bound calcium would explain the lack of Vitamin D in autoimmune disease.
     
  12. richvank

    richvank Senior Member

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    Hi, Annesse.

    I just ordered a copy of your book from Amazon.

    Best regards,

    Rich
     
  13. Jenny

    Jenny Senior Member

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    Thanks for your further explanations Annesse. You mention abnormal calcium metabolism. Do you think there is any connection here with the high intra-cellular calcium that is found with people with ME (and I believe other chronic diseases) shown by results from the Acumen tests?

    Jenny
     
  14. Abha

    Abha Abha

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    Lee Ann,Annesse et al lots of interesting things on this thread.I need to get my brain clearer and to read it in full but from my own llness(ME/CFS..parathyroid disease/osteoporosis/hypothyroidism/B12 deficiency/pernicious anaemia/autoimmune gastritis/parasites/viruses/rickettsia conorii/candida etc)re the calcium problems another excellent place to look is at www.parathyroid.com(Dr Norman's site/Tampa/FL).It is excellent on this subject and i was able to diagnose my own parathyroid disease(possibility)with the help of that site(had it confirmed in UK)...then i had the operation(brilliant)in Florida.Dr Norman stated that an earlier diagnosis would have helped me.From memory I think he wrote that I had the tumour/illness(?)for at least 12 years.I had very high blood calcium levels +(high PTH levels needed for a parathyroid disease diagnosis).I'm in my late 60's now(lifelong sufferer)...have had organophosphate exposure too(malathion due to work/compound spraying abroad.....an assault worsened my condition in 1970's....this was followed by poor NHS diagnosis/treatment/anger/abuse/dismissal.etc...mixed with good practice at times too! Dr Myhill's tests show i have Mitochondrial problems too(45/100 on her Disability Scale(from memory).Dr Norman probably saved my life(2006)and gave me a few more years.Brilliant surgeon.....
     
  15. Annesse

    Annesse Senior Member

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    Hi Rich, I am thrilled that you have ordered a copy, but I would have been honored to send you one for free. It means a lot to me that you did though, so thank you.

    Hi Jenny, Yes, I very much think there is a connection to the high intracellular calcium and the inability to carry protein-bound calcium.
    Also, another autoimmune disease, Sarcoidosis, which is the abnormal deposit of vitamin D would be connected. Sarcoidosis is also found on the associated diseases and disorders with Celiac. I just use Celiac disease as an example because there is no doubt that the inability to digest the protein gluten is the cause. The inability to properly metabolize these nutrients is also the reason you shouldn't supplement them in your diet. As with sarcoidosis, taking more vitamin D would give your body more to deposit in your tissues. Same with calcium, if you take supplemental calcium that you are unable to metabolize, that would just mean your body would have more to deposit in your joints and other tissues. "Soft tissue, any kind of body tissue other than teeth and bones, is a target for depositing calcium. Wherever this happens, pathology occurs: in the joints, around inflamed areas (osteoarthritis), in the arteries (arteriosclerosis), in the kidneys (kidney stones), in the soft lenses of the eyes (cataracts), in the brain (stroke) and so on," (Lee, 2009)
     
  16. Annesse

    Annesse Senior Member

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    Since we know for sure what causes Celiac Disease, (CD) we will continue to use it as our example. Is there evidence in Celiac that it isn't just the one protein -gluten- that is the problem? For one thing, CD patients also lack B12 just like all of the other diseases we have been discussing. (I posted study title) B12 is only found attached to dietary animal proteins. Also, the strong connection to hypothyroidism (Just as in CFS) is another indication that CD patients are unable to metabolize phenylalanine which is found in the same high protein foods as B12. (Phenylalanine converts into both of the thyroid hormones). The connection CD has to RA is also another indication that Celiac patients are not able to digest proteins and therefore lack the ability to carry protein-bound calcium. Also, its connection to sarcoidoisis. (vitamin D is dependant on protein bound calcium)

    Let's look at some of the other conditions listed with Celiac. These same conditions are commonly found throughout all autoimmune disease.

    Ataxia is on the list. Eye problems, neuropathy, and cognitive impairment. Following is some information from Medlink. I think the take home message here is: IF YOU LACK SOMETHING, IT WILL LEAD TO SOMETHING. All of these diseases lack vitamin B12.

    " Less common neurologic manifestations of B12 deficiency include movement disorders such as parkinsonism, focal dystonia, chorea, and blepharospasm (Pacchetti et al 2002; Ahn et al 2004; Edvardsson and Persson 2010).

    An unusual but well documented manifestation of cobalamin deficiency is optic neuropathy. This may present as a subacutely progressive decrease in visual acuity with a cecocentral scotoma (ie, a scotoma obscuring central vision and enlarging the blind spot). The condition known as tobacco-ethanol amblyopia is similar, and may, at least in part, depend on cobalamin deficiency. A case of the Charles Bonnet syndrome (visual hallucinations in a person with marked visual impairment) has been described (Bourgeois et al 2010).

    Severe B12 deficiency causes psychiatric and cognitive disturbances in some patients. The abnormalities are not specific and can range from depression or mild memory impairment to global dementia.

    Well recognized neurologic manifestations include peripheral polyneuropathy, myelopathy prominently involving the dorsal columns."

    In the end, we will be able to take nearly all of the associated conditions and diseases listed on the Celiac Disease Research and Associated Diseases and Disorders list and trace them all back to the inabiltiy to digest proteins. (Not just gluten). Take the first disease on the list for example- Scleroderma. Elevated levels of homocysteine are linked to scleroderma. Low B12 would raise homocysteine. In the study entitled, "Homocysteine Plasma Concentration is Related to Severity of Lung Impairment in Scleroderma, " it states, "In patients with scleroderma the homocysteine concentration was SIGNIFICANTLY higher than in controls."
     
  17. Annesse

    Annesse Senior Member

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    If we are right about all of these diseases and their symptoms being caused by the inability to digest proteins, then we should be able to take every symptom that is commonly found in them and trace them back to this one source. Here are a few examples of how we would do this.

    Sleep Apnea is a common condition in CFS and in many autoimmune diseases. http://aboutmecfs.org.violet.arvixe.com/Trt/TrtSleepApnea.aspx

    We have already shown a lack of dopamine and acetylcholine in all of these diseases. (Dopamine comes from phenylalanine, and acetylcholine comes from choline. Choline comes from B12) Here is some information that shows sleep apnea is linked to low dopamine and acetylcholine. http://www.webmd.com/sleep-disorders/sleep-apnea/news/20030707/faulty-brain-may-cause-sleep-apnea

    Restless Leg Syndrome would be another example. Here is some information that shows restless leg syndrome is linked to low iron and low dopamine. Once again, these are commonly found deficiencies in autoimmune disease. (Anemia is also listed on the celiac associated disease list)

    http://www.ninds.nih.gov/news_and_events/news_articles/news_article_rls_iron.htm

    The same thing in the body that is responsible for the binding and transport of B12 also regulates iron absorption. (And Tumor Necrosis Factor) We will show you what this is in the next few days.
     
  18. Jenny

    Jenny Senior Member

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    Annesse - if the inability to digest proteins is a major factor in ME, how can some people's spontaneous recovery be explained? (Presumably this digestion problem happens because ME patients have an inherent deficiency in a particular enzyme or enzymes.) Some do recover without having any particular treatment, and some, like me, have long virtual remissions.

    Jenny
     
  19. Annesse

    Annesse Senior Member

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    Hi Jenny, the problem with the digestion of proteins is not irreversible. We just think it is. I will demonstrate with studies how even Celiac patients are able to eat gluten with no toxic side effects soon. Many factors come into play in the development of autoimmune disease. As you said, the inability to digest proteins is a major factor. The spectrum of autoimmune diseases and the symptoms that accompany them follows a pathway. Proteins-B12-Enzymes. Anytime something interferes with this pathway, you will see symptoms associated with autoimmune disease. I demonstrated this with dysbarism and nitrous oxide. The information I posted on nitrous oxide also said that recovery is slow and incomplete. This may be the case if that is how the pathway is interrupted. Not necessarily though if only part of the pathway is interrupted or it is more easily repaired. This would vary from person to person. All of us have different triggers, differing amounts of enzymes and B12 to begin with. Some of us could recover more quickly or even completely because of this. In general though, unless we actively restore the components of this pathway, we will just continue to get sicker.

    Here is another example of how the interruption of this pathway can lead to CFS. This time it was the enzymes. This is from the abstract, "Chronic Fatigue, Fluoride and Heavy Metals".

    "The term "CFS" or Chronic Fatigue Syndrome made it national appearance in the mid 1980's with the investigations of Dr. Paul Cheney concerning sick persons in the area of Lake Tahoe. Cheney's patients were from an extinct volcanic zone with contaminates in well water. From the study of volcanology, we know volcanic zones have many of the toxic FLUORIDES and metal problems associated with mining.Fluoride is a POTENT ENZYME POISON due to its affinity toward trace minerals." There have been warnings issued for immune compromised persons to not drink the water in South Lake Tahoe because of these pollutants.

    Here is an example of another enzyme trigger. Of course the degree to which you are exposed would play a factor in how sick you became and how long it would take to recover.
    http://www.arthritistoday.org/news/bug-spray-insecticide-arthritis-lupus007.php

    Pesticides are poisons, and most poisons work by SPECIFIC INHIBITION OF ENZYMES.
     
  20. Annesse

    Annesse Senior Member

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    I thought the following information was extremely interesting. It came from an article entitled, "Multiple Sclerosis: Overlooked Nutritional Research".

    "So who does not get MS? This is perhaps the biggest clue to MS of them all. Generally, people with gout. According to one paper, a review of 20 million patient records found the ailments appear to be almost mutually exclusive.

    If people with MS rarely develop gout, and those with gout rarely develop MS, then it would be logical to look at why these conditions may be close to mutually exclusive. First, let's look at what causes gout. It is high levels of uric acid.

    Interestingly, studies in the U.S. and Hungary show that people with MS have low levels of uric acid."

    This is a question for anyone who would like to help answer. If the cause of MS is the inability to break down proteins, how would this prevent gout?
     

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