The difference between MS and ME

[Annesse]

Yes Lee Ann, keeping the B12 deficiency level at 200 pg/mL is very strange. That is the level you see one of the most severe manifestations of a B12 deficiency, which is pernicious anemia. That is like a car manufacturer deciding to have the engine light come on in a car just as the engine explodes. Very strange indeed. Even at 500-550 pg/ mL (which is the level Japan sets its B12 deficiency) you will see dementia.

I believe that your low B12 is linked to your symptoms. However there is more to it than that. The question to answer is -Why are you deficient?
Are you a vegetarian? If not, then you most likely are eating foods that contain B12, but you are not properly metabolizing it.

The country with the most vegetarians in the world, also leads the world in heart disease. That country is India. India is responsible for 60% of the world's heart disease. And they know why. Their doctors, their newspapers and even their studies confirm it is due to a lack of B12. The following abstract shows how prevalent low B12 and high homocysteine is in India. Even with an extremely low limit tested for B12 (150 pg/mL), it was found that 81% of the urban middle class group had low B12, and 79% had hyperhomocysteinemia. Homocysteine is 40 times more predictive of heart disease than cholesterol.

http://www.ncbi.nlm.nih.gov/pubmed/17214273

Another surprising fact, is India also leads the world in diabetes and other autoimmune diseases as well. They are literally called, "the diabetes capital of the world" by the International Journal of Diabetes in Developing Countries. Their diabetes is also linked in studies to their lack of B12. B12 is found in dietary animal proteins. Just like the prisoners of war that developed myathenia gravis from lack of B12, Indians are developing autoimmune and heart disease from not eating animal proteins.

Americans, however, are a different story. We have the same lack of B12, but we eat plenty of animal proteins. Tufts University found that 40% of Americans are deficient in B12. The study used 258 pg/mL as their criterion. If you find the reason you are unable to metabolize B12, I believe you will have found the true source of your symptoms. Taking B12 in supplement form may not solve your problems. In fact, it may actually increase them. If you are unable to metabolize B12, no matter how much you take either in supplement or natural form, you will be unable to properly utilize it. This is like taking a bunch of suitcases with you to the bus stop. If the bus doesn't come, no matter how many suitcases you bring, you aren't going anywhere.

 

[Annesse]

One of the keys to finding the source of all autoimmune diseases was observing the things they share in common. They can all be traced directly back to the same thing. Rheumatoid Arthritis is an autoimmune disease. Therefore, it will follow the same pathway.

A study published in the Journal of Internal Medicine looked at the risk of ischemic heart disease associated with rheumatoid arthritis and found, "The risk of having a heart attack is 60% higher just a year after a patient has been diagnosed with rheumatoid arthritis. " (Wiley-Blackwell, 2010)
What does rheumatoid arthritis have in common with many of the other autoimmune diseases? Elevated homocysteine. Due most likely to lack of B12.
Here is the study. http://www.ncbi.nlm.nih.gov/pubmed/9125255

Symptoms of a disease are clues as to where it originates. They are not the disease. We have been given so many clues. I think the main reason this has not been figured out before, is that it was not recognized that all of these differently named diseases were just the symptoms, in fact,of one disease.

Here is another clue. Rhematoid arthritis also has dysregulated tumor necrosis factor. So does CFS. So does MS. In fact, in MS the magnitude of the elevation of TNF in cerebrospinal fluid mirrors the severity of the disease, "(Finsen, 2002). Another autoimmune disease with elevated TNF is Crohn's disease. Remember, Crohn's is on the fibromyalgia differential list.

Both elevated TNF and elevated homocysteine can be directly traced back to the source of all these diseases.

 

[richvank]

Hi, Annesse.

Are you familiar with the book "Could It Be B12?" by Sally Pacholok and Jeffrey Stuart? I have a copy of the first edition, but I see that there is a second edition, since Jan. 2011. I think that many of the views you have expressed here are in agreement with those in this book.

Also, I'm curious, did you come from the WrongDiagnosis forum? It looks as though several people have come to this forum from that one, since Freddd did so, bringing his B12 protocol. This has certainly added a lot to our discussions here. I'm just wondering how you came to your views on the involvement of B12 in so many disorders. I don't disagree with you. I just don't understand all the connections yet.

Best regards,

Rich

 

[mellster]

I brought my b12 levels from the 300s to 550 through supplementation (not just of b12 itself) and had good FM symptom improvement although I still want to up it more than that - I heard though that the absolute serum level can be deceiving as it might not reach the cells, so how telling is the absolute serology level test and is it worthwhile doing a more thorough test (although it seems to have somehow worked)? thx & cheers

 

[Annesse]

Hi Rich,

No, I haven't read the B12 book you are speaking of. And no, I didn't come from the WrongDiagnosis forum. I have not seen the forum. I actually don't know, but I am assuming when you say B12 protocol that they advocate supplementation with B12. I don't. I believe that the problem with B12 lies in the binding and transport. Taking nutrients we can't bind or transport has been shown through numerous studies to increase disease risk. Specifically,the ones that are commonly found missing in autoimmune disease, such as low iron, low vitamin D and B12. I will find and post some. Also, I believe the resulting lack of B12 from the inability to metabolize it, is only part of the pathway. For instance, elevated TNF is not caused by lack of B12. It is ,however, caused by the same thing that is responsible for the inability to metabolize B12.

I suffered with lupus for 20 years. It was when I discovered one of the causative factors of lupus that led me to understand it was also connected to every other autoimmune disease as well. (No, it wasn't B12, it was the reason we lack B12)

As long as we are on the subject of TNF, here is some more information on its involvement in CFS.
"Researchers at Duke University Medical Center have tracked down the cells that trigger sore, swollen glands in the throat. Small immune organs, known as lymph nodes, are found throughout the body (including the neck) and swell to help fight bacteria and viruses during an infection. The swelling occurs as the body starts producing cells to help fight the infection.

A group of cells called 'mast cells', start the swelling. The Duke University researchers found that mast cells release tumor necrosis factor. It journeys to the lymph nodes, where it activates infection fighting cells. This would explain the swollen glands that often accompany autoimmune disease, even without an infectious agent present."

The abstract entitled, "Dysregulated expression of tumor necrosis factor in chronic fatigue syndrome," shows the connection to CFS and dysregulated TNF. (I will find and post the study)

The problem isn't TNF. It is a normal necessary part of our immune systems. The problem is the inability to degrade it when necessary. The drug Humira (used in RA and Crohn's) was designed to target TNF. But interfering with our bodies natural ability to fight infection leads to the side effects stated on the Humira website. Some of side effects listed are, "serious infections, nervous system problems, blood problems, heart failure or worsening of heart failure, psoriasis, immune reactions, including a lupus-like syndrome, and certain types of cancer."

"Besides causing Crohn's, the swelling of the glands and being directly related to MS, elevated TNF causes the swelling and pain of the joints in RA, insulin resistance in diabetes, elevated C-Reactive Protein and the fever and loss of appetite that all of these diseases often share."

Thank you for your patience Rich. Just telling someone "the answer" unless you show them how you arrived at it would not do much good. I have stated that EVERY SYMPTOM of every autoimmune disease can be directly traced back to one singular cause. I have much to share.

 

[Annesse]

Here is the study. http://www.ncbi.nlm.nih.gov/pubmed/8148443

 

[Lee Ann]

Annessee,

For about 7 yrs, I went w/out eating red meat. Heart disease took my father when he was 60 so I thought I was doing "my body good" by eliminating red meat. I was very ignornant to the fact that B12 and B's were essential and I never supplemented. How foolish was I. I would rather have a heart attack than be in the situation that I am in now.

 

[richvank]

Hi, Annesse.

Thanks for your response. From what I can tell, you are coming at this from a completely different direction than I am, and I think also different from Freddd's direction of approach, so I'm going to have to do some work to figure out how to connect with you! It sounds as though it will be worth it!

My approach is pretty focused on ME/CFS, and so far, I don't believe that it is fundamentally an autoimmune disease, in spite of the suggestion from the recent Norwegian study using Rituximab. I do, however, believe that a functional deficiency in B12 is involved in the pathogenesis and pathophysiology of ME/CFS. I don't know if you would be interested in finding out more about the hypothesis I have proposed, but if so, there are a video and pdf slides on the internet here:

http://iaomt.media.fnf.nu/2/skovde_2011_me_kroniskt_trotthetssyndrom/$%7Bweburl%7D

Freddd has not been on the forum for a while, so I will attempt to explain his direction of approach and the applicablity of his suggested protocol. Freddd himself, according to what he has reported, has an inborn genetic error of metabolism in his intracellular B12 processing enzymes. From what I can deduce, it is in the so-called CblC complex, involving the MMACHC protein. This complex is what removes the ligand (cyano, methyl or adenosyl) from B12 that is transported into the cells, and then sends it on to form the appropriate amounts of methyl B12 and adenosyl B12 for use by the cells. The results of having this genetic mutation are that it has been very difficult for Freddd all his life (he's posted that he's around 60 now) to get enough of these coenzyme forms of B12 to the enzymes that need them as coenzymes. What he has found is that if he takes large dosages (many milligrams) of both coenzyme forms of B12 (either sublingually or by injection), his many symptoms are corrected. He also includes fairly high dosages of methylfolate and several cofactor supplements. Apparently, if he is able to get high enough concentrations of these coenzyme forms of B12 into his blood, enough of each is able to diffuse through the cell membranes, bypassing all the usual absorption, transport and processing of B12, so that his cells can get what they need.

The point of explaining this is that Freddd's protocol is in principle capable of effectively treating a wide range of B12-related abnormalities, because it bypasses all of them. This includes pernicious anemia. transcobalamin deficiency, and all the inborn errors in the intracellular B12 processing. Perhaps this is relevant to some of the disorders you are interested in.

My suggested protocol was derived from autism research, and it is more limited in applicability than Freddd's, because it uses only hydroxo B12, and depends on the intracellular B12 processing to convert it to the coenzyme forms, but it does bypass the normal absorption of B12 by the gut, because it is sublingual.

I would like to be able to understand the nexus (if there is one) between what Freddd and I have been doing and what you are talking about. Can you help me out with this?

Best regards,

Rich

 

[Annesse]

Hi Lee Ann,

I don't think you acted foolishly. You did the best you could with the information you had at the time. Taking supplements may not be the answer either however. When you see all the factors at play in these diseases, I think you will have a better understanding of why.

When the information from Warwick University on the lack of Vitamin B1 in diabetes (posted above) was released to the public, diabetics around the world started to supplement with vitamin B1 and the other B vitamins. The result of this was devastating. It had a very negative impact on their kidneys. World Wide press releases were issued to tell them to stop. Here is an article from The Globe and Mail on supplemental B vitamins being linked to heart and kidney disease.

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

The reason diabetes lack B1 in their blood plasma and because it was being excreted in their urine was because of their lack of B12. Taking B1 without the ability to bind or transport it is what led to it being excreted in their urine. If you take B12 without the ability to bind or transport it, what will be the ramifications?

 

[Annesse]

Sorry Rich, I missed your post again. I am going to find a study, but will address your post in a bit.

 

[Annesse]

Hi again Lee Ann-

Another common nutrient found deficient in CFS, fibromyalgia and many other associated diseases is vitamin D. For fibro and CFS, I believe nearly 25% have been found to be deficient. Here is some recent research that provides evidence that the lack of vitamin D in autoimmune disease is actually not the CAUSE of the disease, but is a RESULT of the disease. Also, it is in fact a secosteroid and will work in a similar manner as a steroid with a short term improvement, but with an increased risk of disease. The target organs are the lungs and the heart. For proper metabolism of vitamin D, calcium is required. Even if you take D with calcium, you are still at risk. You can type D3 into Wiki and see that it is a main ingredient in rodent poisoning. The target organs being the lungs and heart. Again we know that calcium is necessary for vitamin D metabolism, but what is necessary for calcium metabolism? If you can't answer this question, then you may very well be increasing your risk of disease, rather than lowering it if you take it.

http://www.sciencedaily.com/releases/2009/04/090408164415.htm

Hi Rich, thank you for your explanation of your B12 protocols. I have also viewed most of your video. It is very impressive. I have never researched how to correct the B12 deficiency found throughout these diseases through supplementation. My focus has been on restoring the body's ability to bind and transport B12. I think your research on glutathione ties in very well. I think in the end, when all the puzzle pieces are on the table we will all come to the exact same conclusion.

The inability to metabolize vitamin D is another common finding in autoimmune disease as well as fibromyalgia and chronic fatigue. Dysautonomia is a common feature of all of these diseases. The recent spinal tap studies on CFS and fibro show a protein pattern consistant with damage done to the endothelial cells. (homocysteine) Again, true of MS, RA, diabetes, lupus, hypothyroidism, migraines, eye damage, Raynauds, Scleroderma, heart complications etc.

A key feature of the spinal tap studies was the suggestion of amyloids in CFS and Fibro. Amyloids also exist in lupus, RA, and Sjogrens. Here are some of the symptoms-irregular heartbeats, numbness, shortness of breath, swelling and weak grip. They can also lead to endocrine failure, as well as heart, kidney, and respiratory failure. I believe these are just clusters of symptoms, not seperate diseases. That is why these diseases share the same biological findings and the same pattern of symptoms.

 

[Firestormm]

Morning,

I haven't been able to read the whole thread but there is an obvious and fundamental difference between 'ME' and Multiple Sclerosis is there not?

The one thing that really defines MS now is the damage to myelin which is shown by use of a MRI scan. Of course a doctor has to suspect MS before recommending referral to a neurologist and/or having the MRI but (according to NHS Choices) over 90% of MS is diagnosed by such scans.

Symptoms are very similar granted, and it is possible to 'slip the net' but MS can be positively diagnosed through MRI - its' just a shame that 'ME' does not yet have a similar diagnostic marker.

Sorry if I have gone 'off current topic' but I couldn't see reference to this key difference. Returning to NHS Choices you can see what it is they look for pre-referral too: http://www.nhs.uk/Conditions/Multiple-sclerosis/Pages/Symptoms.aspx

It would seem that 'eye problems' are perhaps the first noticeable symptom that would be checked - though again (as with many neurological conditions) - it all rather depends on the observability of ones symptoms and the ability of the physician to recognise them and to refer the patient to the specialist doesn't it?

Personally I have met several people who went undiagnosed for quite some time because their doctors' had not been able (or did not recognise) the symptoms for what they were. A couple of those were indeed diagnosed (incorrectly) with 'ME' in the first instance.

Then again, I have also met people who went undiagnosed until eventually their symptoms were such that they eventually received diagnosis and treatment for other neurological conditions - thinking specifically of Parkinson's.

The system ain't perfect by any means...

 

[aprilk1869]

Hi again Lee Ann-

For proper metabolism of vitamin D, calcium is required. Even if you take D with calcium, you are still at risk. You can type D3 into Wiki and see that it is a main ingredient in rodent poisoning. The target organs being the lungs and heart. Again we know that calcium is necessary for vitamin D metabolism, but what is necessary for calcium metabolism? If you can't answer this question, then you may very well be increasing your risk of disease, rather than lowering it if you take it.

http://www.sciencedaily.com/releases/2009/04/090408164415.htm

The link you posted is about Marshall. There are people here who have gone on the Marshall Protocol and you can read their comments here. Sounds interesting in theory but doesn't seem to work in practice.

Also, Stephanie Seneff, PhD feels the reason vitamin d supplements don't work is because we need the sulfate form which we get from UV light. You can read more here.

Stephanie talks about how the Mediterranean diet is really only healthy in the Mediterranean because of the sulfur in the soil. I think 10% of sulfur intake also comes from water and the hard water contains more sulfur than soft water. In Scotland there is a big problem with MS and in Scotland we have very soft water. So I wonder whether that's a contributory factor along with poor sunlight.

 

[alex3619]

The one thing that really defines MS now is the damage to myelin which is shown by use of a MRI scan. Of course a doctor has to suspect MS before recommending referral to a neurologist and/or having the MRI but (according to NHS Choices) over 90% of MS is diagnosed by such scans.

Symptoms are very similar granted, and it is possible to 'slip the net' but MS can be positively diagnosed through MRI - its' just a shame that 'ME' does not yet have a similar diagnostic marker.

Hi Firestormm, my understanding is that this is not the case, its the common opinion amongst doctors but its wrong. I can't prove this however, as its only based on comments I have read over the years from a number of MS experts. Many ME patients have the same kinds of lesions. There is an overlap with spread and type of lesion in MS and ME. What I understood the difference to be is that ME lesions are transitory, often small, and typically not progressive, but this is not possible to determine from a single MRI scan. Multiple scans over time would be required. MS on the other hand have long term lesions in the same locations, and sometimes it progresses to more and larger lesions. In this context those MS experts were talking about ME as something along a spectrum, as I have said before. I cannot remember who they were, it was many years ago I was reading this.

Bye, Alex

 

[richvank]

Hi, Alex.

I also believe that there are problems with the myelin in ME/CFS. There are at least three substances in myelin (phos. choline, choline plasmalogen and myelin basic protein) that require methylation for their synthesis. There is good evidence for a partial methylation cycle block in ME/CFS (lab testing and positive results of treatment directed at restoring methionine synthase to normal operation). With low methylation capacity, I think it is reasonable to suspect that myelin repair would suffer. In addition, one of the best documented brain-related problems in ME/CFS is slow processing speed. This would be consistent with myelin damage, because myelin is what makes possible rapid transport of nerve impulses in the axons of the neurons.

Beyond this, I suspect that the electromagnetic radiation sensitivity experienced by some people with ME/CFS is due to myelin damage, because myelin normally acts as electrical insulation on the axons. With damaged myelin, I suspect that currents induced in the body by external em radiation can flow in the nerves, producing neurological symptoms.

In MS, the myelin damage results from an attack on the myelin by the immune system. That is, it is an autoimmune disease. In ME/CFS, I suggest that the myelin damage results from lack of normal maintenance and repair. This may account for the different characteristics of the damage, as viewed by MRI.

Best regards,

Rich

 

[Enid]

That certainly ties up with everthing my Neurologist tested for and spoke about Rich. And in the end it was all this that so confused him that he gave up - not Parkinsons, not MS but what. (He said could be ME and they think it's viral).

 

[Annesse]

Hi aprilk1869,

I believe that a program designed around the use of antibiotics to heal CFS or any associated disease could have far reaching and detrimental effects. I have not taken antibiotics in over 20 years and based on what I now know about the disease process itself, I would never do so. I know that antibiotics are part of the Marshall Protocol. I posted the Science Daily article to provide evidence that vitamin D is lacking in autoimmune disease (as it is in CFS and fibro) but that trying to remedy this lack through supplements could actually increase your risk of disease. I will clearly show in the near future why autoimmune sufferers and CFS sufferers are not able to metabolize vitamin D. As the article states, "Low Levels Of Vitamin D ..May Be Result, Not Cause, Of The Disease." Thank you for the link and information you posted, I will check out the link.

Hi Firestormm, I've gotten alot of help already in answering your question. I think though that MS and CFS have the same symptoms because the biological findings are the same.

Here are some of their shared biological findings.

Both have dysregulated tumor necrosis factor- I posted information and studies to confirm this.

Both have vitamin B12 deficiency-In fact, the study entitled: "Plasma Vitamin B12 Status and Cerebral White-matter Lesions" concludes, "These results indicate that vitamin B12 status in the NORMAL range is associated with severity of white-matter lesions, especially periventricular lesions...It is hypothesised that this association is explained by effects on MYELIN integrity in the brain...

Both have dysregulated homocysteine.

Both have dysautonomia as a main feature of the disease. I posted a study above to show that 90% of MS patients have dysautonomia. Also one to show dysautonomia is a prominent feature of CFS. The study entitled, "Autonomic Dysfunction in Multiple Sclerosis: Cervical Spinal Cord Atrophy Correlates," states, "AD (autonomic dysfunction) appears to be more closely related to axonal loss, as demonstrated by spinal cord atrophy, than to demyelinating lesions."

Spinal cord degeneration would also explain many of the symptoms of MS. The NIH states that "Subacute combined degeneration of the spinal cord is CAUSED by a B12 deficiency.

If they share identical biological findings and most if not all of the same symptoms, what are we left with?

 

[Annesse]

Here is another nail in the coffin. Amyloids. Amyloids were a key finding in the spinal tap studies done on CFS. Here is a study that shows they are present in MS also.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2760720/

 

[Annesse]

Hi Enid,

I believe that all of these diseases share a common source. That is why the symptoms and biological findings are the same. For instance, lack of dopamine is found in Parkinson's, MS and CFS and Fibro. Lack of dopamine is one of Dr. Wood's findings in fibro as I posted above. Here is some more info on lack of dopamine in CFS and Fibro. http://chronicfatigue.about.com/od/treatingfmscfs/a/dopamine.htm

Here is a quote from a recent study published online in Brain and reported on in US News & World Report. (University of Illinois at Chicago, 2011).
"Multiple sclerosis is associated with reduced levels of an important neurotransmitter, noradrenaline. There is a lot of evidence of damage to the Locus Coeruleus (LC) in Alzheimer's and Parkinson's disease, but this is the first time it has been demonstrated that there is stress to involved to the neurons of the LC of MS patients, and that there is a reduction in brain noradrenaline levels,' said the study's first author, Paul Polak, a research specialist at the University of Illinois at Chicago."

Here is the connection. Noradrenaline is derived from dopamine.

 

[Enid]

Very interesting - thanks Annesse - looking like we have to be the sleuths too. (well you and all scientists here - interesting to follow through). I can't recall Parkinson or MS suffers met going through the cognitive (as opposed to motor) impairment in ME. and it's severity. It sounds like a specific part of the brain is affected more in ME. (like the brain stem - loss of homeostasis etc). ? Similarities are being found but isn't there a study showing protein markers specific to ME in the spinal fluid. ?