Marshall Protocol?

[Tim-n-VA]

Thanks for the alternate viewpoint Richard. My experience is similar to yours. Responses in these threads aren't just for the active participants, they are as important (if not more important) for the lurkers who are stuggling to deal with these issues.

[eleep]

I do think it's important to understand some of the medical classifications -- because they're different for some of these labels we sometimes group together as related illnesses. Fibromyalgia and CFS, for instance, are both classified as syndromes -- which means they're a cluster of symptoms that are generally seen in association -- not the same thing as a disease.

Syndromes are often labeled as such when the thing that makes these symptoms occur together isn't always known -- the underlying cause -- which could be a disease -- is still up in the air according to medical researchers. However, what happens sometimes is that the underlying cause is known, but the disease is still often referred to in common usage by its syndrome -- hence we have AIDS for HIV.

Anyway -- my feeling is that this has to do with why we see so many celiacs who were formerly diagnosed with syndromes and whose symptoms clear up when they go on a gluten-free diet -- not all people with CFS are celiacs, but many of the symptoms associated with CFS could be celiac as well. Were CFS a more definitively known entity, perhaps that wouldn't happen so much.

Don't know if I'm making much sense -- I just got out of a hot bathtub and I'm drinking a glass of wine before dinner. I have my first genuine date in a really long time and I'm trying to chill out.....

eleep

[HawkFire]

I am truely astounded at the improvement in my joints. I am pain free. I don't know why this isn't a standard "cure" for arthritis. I know there is no cure ofr celiac. You only remove gluten but do not cure the condition. So, why do they not tell everone to try the minocine or doxy or zith first? It is a "cure". It is amazing. I am no longer in pain aside from the "herxing". When I take a dose, I have spot specific "flares" that are similar to tantrums a two year old would throw. Then they disappear altogether. There is a cure for arthritis. How many are suffering? Two million in the us. I am sad that I suffered for a cumulative time period of two years with aching joints. There was a cure all along. Tell your friends. It is just lkek the removal of gluten for celiac. No one knows there is a cure for their pain. Please spread the word. Antibiotic protocol works. The book is "the new arthristis breakthrough" and the site is the roadback.org. Spread the word. Save th equality of life of a loved one. I am repeating this as it is my Christmas miracle and I want to share it. I am wrapping gifts with pain free joints. My life has changed as much as when I went gluten free.

[HawkFire]

To all- I am pain free on AP. I want to tell you again that it worked. I want others to know so that this joy can be shared with all who take the time to go to roadback.org. I am very grateful to God that I found that site and want to let others know. If you have fibro, cfs or , like me, joint pain that just will not go away, you can be helped by taking the AP. My doctor did not support this, but it worked fully. I am so happy. I want to share teh good news with any who are willing to listen.

[Fiddle-Faddle]

Merry Christmas, Hawkfire! I am glad that the AP worked so well for you. I will keep it in mind if I ever develop arthritis symptoms. As for spreading the word, I'm not even gonna try--everybody I know already thinks I am crazy for being gluten-free! However, I bet there are arthritis support groups in your area, or maybe some on-line ones? And does your doctor know how much better you are feeling, or does he attribute this to the placebo effect? Either way, seems like he'd want all his patients feeling this much better, wouldn't he?

[amigo]

Thought this would be of interest:

Open Original Shared Link

Open Original Shared Link

[gfp]

Well, richard, you have the perfect doctor experience most miss out on. Your doctor must be amazing. I learned about the new enzyme pills for celiacs here at celiac.com. BTW, you don't have to try so hard to let me know I annoy you. I get it. I will assume all my posts rub you the wrong way. No need to continue to make snarky replies. As I said, I get it.

Erm, yeah I keep getting them pitched down the right hand side of my screen..?

HawkFire.... I think the problem really is that of human nature....and different ideas.

I know lots of really nice Americans but many of them disagree strongly with taxing people at all, let alone spending that money on public health (or education) because they feel perhaps that person should have had parents who had enough money to give them an education to get a job with a healthscare scheme that allows them to see the best MD's.

And America still has some of the best MD's in the world ... they are just based on affordability.

But its all wrapped up in so much other stuff and basically in the end what people will vote for...

This is absolutely true (forgive me for not mentioning the surgeons name but ...)

A friend of mine is a world class CV surgeon.... I mean really top class she (that already narrows it down) gets offered teaching posts at most of the worlds TOP CV units...

She accepted one in France (where I met her) but basically looked at what they were offering her and laughed... it wasn't even enough to pay for her professional insurance (literally) let alone live on.

She then found out she didn't need professional insurance... something she thought very bizarre... because the teaching hospital take out their own and cover her and in anycase its less than 1/100th of what she would be paying for the same insurance in the US... (I guess CV surgery is always dangerous)....

Anyway.. for one reason or another she accepted the position (obviously or I wouldn't have met her) and we had some interesting conversations... one thing she remarked on was the level of equipment in the US was much better/newer etc. I'll take her word on it but then she wasn't treating the same patients. The fact is that in France you can be an illegal immigrant and still get the best available medical treatment regardless at the tax payers expense. The funny thing is that although she really appreciated the universal healthcare no-expense-spared when she went back to America she still wouldn't want to pay an extra cent in tax to have the same available. Least it seems funny to me...

I doubt she ever had to put up with the US public health system ever in her life... outside of working at medschool... but she probably never experienced being told "nope you can't have that drug its too expensive..."

The wonderful thing though about being human is you can change your mind.... even though she says not I still think she did see benefits ... I myself used to have a similar attitude... unless you experience being on the receiving end it can be hard to see how someone disadvantaged can perceive things differently. Likewise if you end up with an excellent MD who can afford to not run pointless tests just to get a kickback...

When I was growing up my father was (struggling) running his own business. His costs included the UK system where an employer must pay a percentage of pay into the healthcare and retirement system.... and this he felt was crippling his profitability and ability to compete with say a similar business in the US.

If I asked why hobo's lived on the street and didn't have a house I'd be told because they didn't work hard enough at school. (etc.)

Later when I was doing charity work for a housing association I got to meet a lot of homeless people... and sure some were ju7st lazy (perhaps) others had medical issues and others just had plain bad luck....

I remember specifically one guy and I was totting up some numbers for him to apply for a grant to get into subsidised accomadation... I VERY rarely meet anyone does mental arithmetic faster than I do... and this guy did.... I adnmit I was a bit taken aback... this unshaven smelly guy USED to be head of accounting for a big company... lost his wife to cancer and went downhill with a string of bad luck...

My father however continued finding me a misguided do-gooder until he had heart problems....

By this time he had worked himself literally to deaths door.... but had made enough money to see the top consultants at Manchester which was and still is a world class cardiac unit.... on top of that he was incredibly lucky our/his GP was very interested in the then evolving field of heart surgery ....

The bottom line though as he was told by his consultant was.....

"We have already spent the budget for the specific operation you need this year... your chance of being around next year is slim to non... basically pay or die...."

The somewhat ironic part was my father did find the money, the surgeon and consultant also gracefully accepted reduced fees... but its still incredibly expensive to have a bypass and have 2x everything ... so when he came around they told him the good news...

When they actually opened him up it turned out he didn't need the type A operation afterall but a type B and that type B still had some budget allocated....

He still had a lot of stuff to do... he'd sold his house for the operation.... for one thing!

For my Dad... this was finally the point at which he changed his opinion on public healthcare.... he could have gone the other way and blamed the heart problems on the stress and extra work paying for other peoples healthcare had forced on him...

I guess what I'm trying to say is we all have out experiences in life.... and we all have "cultural" experience forced on us too...

As a young kid I accepted my fathers opinions....I also lived through the "great Americanisation" project of Thatcher in the UK and like many people at the time thought it was a great thing... hey we would all be living in houses with white picket fences like in The Wonder Years... but its only really through personal experience that we begin to change these...

The funny thing, my friend the surgeon went back to the US and invented a "product" .. She's no longer working as a surgeon personally saving lives on a daily basis... but working for a medical products company developing and selling a product.

However that product itself is saving peoples lives on a daily basis....

Is one right and the other wrong ... I don't know .....

but the same thing can be said about the drug companies and FDA and govt bodies

Why prevent a 25c course of antibiotics curing ulcers? Well I gues sthe drug companies have to make money and some people will die and others live miserable lives because for the drug companies there is more profit in a drug like ranitidine than tetracycline. At the same time there is more money in making any drug people take daily and never cures them....but the same drug companies do make products that do save lives... they just prefer to only make ones which make more money.

The more money they make the more tax they pay and the more can be spent on public health.... well theoretically!

Personally I doubt it ever works out that way.... but some people probably see it that way and I doubt anything you or I say will change their minds....

[Nancym]

With Ankylosing Spondylitis (another autoimmune arthritis) there has been some research escapees from the gut, like Klebsiella P., cause an autoimmune reaction elsewhere, which leads to the arthritis mess. Here's a paper about that: Open Original Shared Link

Many of the AS sufferers have been using a starch free diet to starve the Kleb. P. and it seems to work for some of them!

I know that since I've eliminated pretty much all grains and my gut is working better, my AS symtpoms are vastly better.

[JennyC]

Autoimmune diseases are real. They are not bacterial/viral infections. Some may be triggered by such. I don't know the specifics of all autoimmune diseases. They all involve the body attacking "self" antigens. For example, RA occurs when the body attacks synovial membranes in the body and starts to degrade them. MS occurs when the immune system attacks mylen of the peripheral neurons. They are different diseases, yet related because they are all brought on by the immune system's failure to recognize "self" antigens.

As for drug companies. Yes some drugs are bad. Tums for example gives your acid-secreting cells in your stomach exactly what they need to continue secreting acid--calcium! But many others are good. Scientists do try to cure disease. Some are very hard to cure, and there are different guidlines in different parts of the world. I have dedicated my life to science to try to cure disease. You just need to use cation and do your own medical research when making health care decisions.

[amigo]

The perception of autoimmune disease as the body attacking itself is old news - Marshall (and others) has discovered otherwise:

Open Original Shared Link

Most, if not all, these "autoimmune" diseases/syndromes have the same root cause - they present themselves differently (symptoms, damage) and thus we have different labels. People with various of these so-called autoimmune/rheumatic/arthritic diseases are recovering from the same treatment. Getting your D-metabolites tested is the best test you can have as this hormone is often dysregulated in these diseases.

[JennyC]

The perception of autoimmune disease as the body attacking itself is old news - Marshall (and others) has discovered otherwise:

Open Original Shared Link

Most, if not all, these "autoimmune" diseases/syndromes have the same root cause - they present themselves differently (symptoms, damage) and thus we have different labels. People with various of these so-called autoimmune/rheumatic/arthritic diseases are recovering from the same treatment. Getting your D-metabolites tested is the best test you can have as this hormone is often dysregulated in these diseases.

One should be cautious before jumping fully on board and committing one's beliefs to small amounts of controversial research. Autoimmune diseases are largely dependant upon T-cells. It is T-cells that must recognize "self" verses "non-self." They may go on to activate B-cells that can secrete antibodies. The idea that all autoimmune disorders are caused by pathogens living within macrophages and other innate immune response cells is a little out there. I won't say that it could not happen, but it is unlikely to be the cause of the majority of cases. To determine this, one would nearly need to make a slide of the infected area and look at the immune cells. Secondly, macrophages are well equipped to handle infection. Their job is to engulf bacteria, digest them, and then present them to B-cells.

Autoimmune disorders do have the same basic groupings of causes. This does not mean they are the same disease. Some diseases may be caused by cell surface marker mutations. Others may be caused by poor negative selection of T-cells, ect.

Just give the research time to be peer reviewed (again and again...), as this is the way science works.

[ravenwoodglass]

The perception of autoimmune disease as the body attacking itself is old news - Marshall (and others) has discovered otherwise:

Open Original Shared Link

Most, if not all, these "autoimmune" diseases/syndromes have the same root cause - they present themselves differently (symptoms, damage) and thus we have different labels. People with various of these so-called autoimmune/rheumatic/arthritic diseases are recovering from the same treatment. Getting your D-metabolites tested is the best test you can have as this hormone is often dysregulated in these diseases.

This was quoted from the link you gave above:

"Antibodies are not the cause of the disease state, they are a by-product of the key inflammatory process. "

And in people with gluten intolerance the cause of this inflammatory response is..........gluten. Remove the gluten and the antibody response will be removed also.

[marciab]

This article discusses the group of studies by researchers below and explains how autoimmune antibodies are eliminated just by eliminating gluten.

Open Original Shared Link

[1]

[ravenwoodglass]

This article discusses the group of studies by researchers below and explains how autoimmune antibodies are eliminated just by eliminating gluten.

Open Original Shared Link

[1]

[marciab]

Raven,

I wanted to take the time to congratulate you on your success with this diet. We both have come a long way since eliminating gluten.

Marcia

[ravenwoodglass]

Raven,

I wanted to take the time to congratulate you on your success with this diet. We both have come a long way since eliminating gluten.

Marcia

Marcia,

No congratulations needed, after all my body did the all the healing work after I stopped poisoning it. I just couldn't stop it from doing so.

I am still amazed almost every day. I discovered last week that I can read and remember what I read again. I stopped reading novels a while before I was diagnosed cause I couldn't keep anything straight.

It was hard at first because I had not found this site and knew nothing of CC or non-food issues. I never would have healed as much as I have if it wasn't for the support and knowledge that others bring to this site. I was so happy to find this place 6 months into the diet.

My Mom used to say that nothing worthwhile is ever easy, but if we work at it and have faith in ourselves eventually the patience and hard work will pay off. I have found this to be so true when it comes to celiac.

I hope we both continue to improve, I already feel like I have been given a second chance at life. It is sometimes hard to believe that I feel younger at 50 than I did at 25.

Best Wishes

Krista

Marcia, I just read your signature, we do have very similar historys don't we. Are you still remodeling? If so please be sure to wear a respirator and gloves if you are doing any drywall work or wall papering. Drywall work got me really bad a couple of years ago before I realized it was loaded with gluten. I have done remodeling and home improvement all my life but I now leave the drywall hanging, plastering and wall paper hanging to others.

[marciab]

Krista,

I am still amazed almost every day. I discovered last week that I can read and remember what I read again. I stopped reading novels a while before I was diagnosed cause I couldn't keep anything straight.

Wow .. you can read ... That's great ... I'm still struggling, but I am comprehending things much better. I just have to read everything several times.

I'm amazed at all of this still too. And not quite sure what to do with my new self. My daughter went off to college this year and for the first time in 17 years I am actually well enough to feel lonely. Before I was just waiting for everyone to leave so I could stop pretending like I understood what they were saying and go to sleep.

I'm working on a re-entry plan though ... I am taking a class tomorrow at the library on computers. My first class, so we'll see if I can concentrate that long..

It was hard at first because I had not found this site and knew nothing of CC or non-food issues. I never would have healed as much as I have if it wasn't for the support and knowledge that others bring to this site. I was so happy to find this place 6 months into the diet.

This site saved me too. I found the word "gluten" while googling wheat free bread recipes. And that lead me to this site. The CC issues didn't sink in until it happened to me. I'm so grateful to have others experiences to read. For some reason, this sinks in easier.

Are you still remodeling?

The project is mostly complete. We tore out 2 bathrooms and between the mold, plywood chemicals, drywall, etc. I was exhausted all the time. I'll be cleaning up grout dust forever.

I see you have been gluten free since 2002, how long did it take for you to get your energy back ?

My energy is better, but it feels like my blood sugar is dropping everytime I exert myself. I tried playing tennis 2 weeks ago and for the first 20 minutes if I drank OJ every 5 minutes, I was ok. After 20 minutes though, my body started shaking and I had to quit.

I know - Too much too fast ... it was fun though ...

I've backed off and am trying to strengthen my muscles with excercise to see if that helps. So far, I've gone 1 month without having a relapse... before 3 days worth of any excercise would have nailed me.

How was this for you ?

Marcia

[ravenwoodglass]

Krista,

Wow .. you can read ... That's great ... I'm still struggling, but I am comprehending things much better. I just have to read everything several times.

I'm amazed at all of this still too. And not quite sure what to do with my new self. My daughter went off to college this year and for the first time in 17 years I am actually well enough to feel lonely. Before I was just waiting for everyone to leave so I could stop pretending like I understood what they were saying and go to sleep.

I'm working on a re-entry plan though ... I am taking a class tomorrow at the library on computers. My first class, so we'll see if I can concentrate that long..

This site saved me too. I found the word "gluten" while googling wheat free bread recipes. And that lead me to this site. The CC issues didn't sink in until it happened to me. I'm so grateful to have others experiences to read. For some reason, this sinks in easier.

The project is mostly complete. We tore out 2 bathrooms and between the mold, plywood chemicals, drywall, etc. I was exhausted all the time. I'll be cleaning up grout dust forever.

I see you have been gluten free since 2002, how long did it take for you to get your energy back ?

My energy is better, but it feels like my blood sugar is dropping everytime I exert myself. I tried playing tennis 2 weeks ago and for the first 20 minutes if I drank OJ every 5 minutes, I was ok. After 20 minutes though, my body started shaking and I had to quit.

I know - Too much too fast ... it was fun though ...

I've backed off and am trying to strengthen my muscles with excercise to see if that helps. So far, I've gone 1 month without having a relapse... before 3 days worth of any excercise would have nailed me.

How was this for you ?

Marcia

Empty nesting, yea me too, mine are grown and either in college or out and working. Sometimes I feel like I live to hear the phone ring.

I hope the computer class goes well. I went back to college after more than 20 years out of school and almost quit the computer class when I burst into tears one day. The instructer was very kind though and said I wasn't the only one and I continued. I wasn't diagnosed yet then and had to give up a full scholarship because I was too sick to continue with my classes. If computer phobic me can pass that class I am sure you will do fine. Just be patient with yourself, hard I know.

It took me about a year to get my energy back. The first half unknowingly gluten light rather than gluten free so I guess you could say about 6 months. One thing that helped me a great deal was the sublingual B12. My energy levels have stayed good unless I get glutened and then it takes me about 2 weeks to recover. I even have the energy most days to make dinner, do dishes and then mow my lawn. It used to take me two days just to mow what I now mow in an hour.

When you do physically demanding stuff before you begin make sure you get a good serving of protein. When you take a break have some water, a protein snack like a couple nuts and a bit of fresh fruit instead of the OJ. The high sugar levels in the OJ will spike your sugar levels up but won't sustain them and you'll crash and need another sugar fix.

Building up your strength and stamina is a good idea. I used a glider to build up my strength, I just stuck the thing in front of the TV. In the summer it's just something to hang stuff on though, I would rather garden.

Hopefully you will soon have more energy than you ever remember having in your life.

Krista

[marciab]

Krista,

Thanks for the B12 reminder. I give myself shots, but I keep forgetting them. I really need to track of it this time and see how these affect me.

Marcia

[VioletBlue]

FYI. Dr Trevor Marshall has no medical degree. As near as anyone can tell his PhD is in electrical engineering. He has no background in medicine or medical research and can point to no medical trials providing any of his claims.

Open Original Shared Link

The perception of autoimmune disease as the body attacking itself is old news - Marshall (and others) has discovered otherwise:

Open Original Shared Link

Most, if not all, these "autoimmune" diseases/syndromes have the same root cause - they present themselves differently (symptoms, damage) and thus we have different labels. People with various of these so-called autoimmune/rheumatic/arthritic diseases are recovering from the same treatment. Getting your D-metabolites tested is the best test you can have as this hormone is often dysregulated in these diseases.

[JennyC]

Not even to mention that taking low doses of antibiotics is just begging for the bacteria to evolve antibiotic resistance to the antibiotic administered. Recently there has been a shift away from frequent antibiotic use--and for good reason. Bacteria are very effective when it comes to antibiotic resistance. Apparently he has not studied biology either.