some where on this forum I cant find it I spoke about "1" dr after another talking down another dr...here is an ex of that going on. not khttp://articles.mercola.com/sites/articles/archive/2009/03/14/clearing-up-confusion-on-vitamin-d--why-i-dont-recommend-the-marshall-protocol.aspxnowing "who" to believe..I just came across this...just making a statement... its soo difficult to know what to believe anymore.
Siskiya
Thanks a lot for the info - I think all of us hope and pray that the true cause of fibro can be found so we can all get some meds that can help.
Sally thanks for sharing. I am just again amazed as how similar the list of symptoms and possible causes is for all of us. Then the ignorant dr's in my country (South Africa) believe fibro is not so bad and maybe its just your imagination! I think if one of those dr's would just experience what we do for a week they would certainly start taking fibro patients seriously.
After reading your reply, I just remembered about the true story of this woman with bad fibro that came across a similar article. She researched it and came across a product called mannatech. Apparently a special type of sugar that restores cell and nerve signals. Well I spoke to her personally (some years back) and after she took this powder for several 6 months, the fibro symptoms started disappearing. She today is free of fibro for several years now. I tried it, but due to the cost and weak South African currency I had to stop.
Thanks - very interesting article. As always I can tick off almost all symptoms listed as most of us on this site can! It just cost a fortune to try and get all the meds that address some of these shortages in the body.
Rachel
I wish I could borrow some of your positiveness. When fibro hits, one usually feel depressed and wonder for how long this is still going to drag on. Just also wish that the cost of these meds helping with symptoms would be cheaper!
Lisa
I am sorry about you also experiencing nausea with fibro, but also relieved, because I also suffer from terrible nausea attacks with fibro. The nausea part seemed to be a bit rare as all the people I know with fibro do not get nausea, so I thought I had something else wrong besides fibro. The dr's here locally could not understand the connection between fibro and nausea, so many thanks for sharing this. I now do not feel alone with fibro + nausea any more. Yes I fully agree with you - the nausea attacks is also my worst symptom! On top of this I became sensitive to all nausea meds. Many people with fibro become what they call chemically sensitive. So I take ginger capsules that help a little bit, not much.
Susan
Thank you so much for sharing this. I almost considered trying the marshall protocol, but besides the cost here in South Africa, I was worried about the long term effect on your kidneys. Read some very negative reports about the antibiotics they use. Now I am not going to try it. Thanks.
Thanks Tammy - I will certainly look up phenergan here in South Africa. I am however, as a lot of fibro patients are, sensitive to a lot of traditional meds, but thanks anyhow.
Hello gigi
Do you happen to have sleep apnea? I do. The result from a sleep study that I undertook it found that I stop breathing at least 47 times in a minute and my oxygen level drops as low as 80%. These results determined that I have sleep apnea and that I needed a CPAP(sleep) machine to use every night of my life for the rest of my life.
Gentle hugs
Rachel
yes I have. I went thru 2 sleep studys an I have to wear one too. I am also in the morning having tonsils an sinus and nose fixed my tonsils also stay swelled so that should eleviate alot of this not being able to breath good an Im hopeing I wont have to use that machine . and I am working on getting this 50 pds off as well it has alot to do with everything in the middle pushing up when I lay down cutting off my air flow as well.....Hugs
I have not actually been nauseous, but I have experienced the sensation of nausea. It is common with fibro. It's called the fibro flu. It means you feel like you have the flu including the sensation of nausea, but I have never actually been nauseous. So, it is one of the symptoms of fibro.
Well LF I have other very difficult things in my life to live with so I have just decided that I am going to make the best of all of them and I am not going to let them destroy me.
To better understand my life you could go to my profile page where you will find a Blog titled My Story........so Far.
Hi gigi,
I can relate, I have secondary Sjogren's and Raynauds P, and I could have written this!
Seems the Sjogren's is something they can do little for, you just utterly 'dry up'! My test results for the SS was off the chart high, and my GP tells me to remember just because this falls into a secondary category does NOT mean that I don't have it worse than the arthritis!
Autoimmune is all through my Mother's side of the family, my grandmother suffered terribly, so with me, the genetic disposition or the 'born with it' thing was always present I can look back now and see it, but it was that last rear end car accident that I could never get over that really kicked all of this up. It was the stress of working so hard, thinking I'm better, I got over this, to only CRASH for months again, and again, and again...Once we are put in this physical and emotional state of Fibro, the last thing we should ever do is to continue to stress or push ourselves about anything!
I think of the cause of FMS is a severe stress response, caused by physical and/or emotional trauma, or the onset of disease with severe chronic pain (diagnosed or undiagnosed) where our immune system goes into such a severe fight, flight, or freeze attack mode, that it becomes unable to switch off again. The brain gets flooded with pain signals known as substance P, and we are forever changed.
Now our nurse member, Allergic, told us in the past that the gene responsible for predisposition to fibro/autoimmune/rheumatic has a switch, but no one has figured out how to turn it off.
This is just some research I did on the internet. Is it true? Who knows. It started with the hand study that came out in June. But I dismissed that research. Then in Oct I read this. http://communities.washingtontimes.com/neighborhood/steps-authentic-happiness-positive-psychology/2013/oct/17/fibromyalgia-solved-pathology-not-mind/
After that one, I went back to the hand study and really read it.
http://www.intidyn.com/Newsroom/Fibromyalgia%20Pathology%20for%20lay%20people%202013-06-24.pdf
It's really hard to read. But it says there is an enormous increase in sensory nerve fibers at specific sites within the blood vessels of the skin in the palms of the hands of people with fibro. These critical sites are tiny muscular valves, called arteriole-venule (AV) shunts, which form a direct connection between arterioles and venules.
OK so there are more AV shunts. Then they explain it like a car. Sometimes you have to warm it up, and sometimes it overheat. The car needs a new thermostat. The thermostat is a valve that regulates the flow of coolant between the engine and the radiator so everything functions properly. The circulatory system of our body works much the same way to regulate our body temperature. For us, it is extremely important to maintain a constant internal (core) body temperature (98.6o) for our most delicate organs to work properly. A sustained decrease (hypothermia) or increase (hyperthermia and fevers) of just a few degrees can permanently damage the brain, kidneys and liver. Maintaining a constant core body temperature mostly involves balancing the blood flow between our muscles and skin.
"We have accounted for the coolant (blood), the pump (heart), the engine (muscles), and the radiator (lungs and skin, especially that of the hands and feet). So what and where are the THERMOSTATS? Several lines of evidence indicates that the thermostats are the AV shunts which are particularly numerous in the palms of the hands and soles of the feet. These are precisely the structures where the AMC and Intidyn scientists discovered the pathologies in fibromyalgia patients."
So the nerve supply to the shunts control whether the shunts are open or closed. So we have too many of the ones that open the shunts and not enough that close the shunts. The open shunts send pains messages to the brain and our bodies don't close them. The excess of the open fibers interferes with blood flow. "This interference could result in a lack of proper nutrition to the muscles during exercise leading to a build up of lactic acid that could contribute to wide spread aching and fatigue."
So then I thought what is lactic acid build up? I read about that and thought that explains the knots in my muscles that will not go away. Lactic acid is the burn you feel when you exercise, but your body gets rid of it quickly and the burn goes away. "When a person's exercise intensity crosses the lactate threshold, the activity rapidly becomes much more difficult and unpleasant. Muscles ache and burn, the heart pounds, and a person feels starved for air. The muscles performing the exercise become extremely fatigued. These symptoms increase if a person continues to exercise above the lactate threshold. In a brief time, the person is physically unable to exercise any longer at that intensity."
This was interesting to me. http://www.healthcentral.com/chronic-pain/h/fibromyalgia-and-lactic-acid-build-up.html
Then I read this. http://www.wellnessresources.com/health_topics/detoxification/lactic_acid.php This line in this article really hit me. "Someone with fibromyalgia already has such a high baseline of excess lactic acid around muscle cells that walking across the room can be the same as a 400 yard dash for someone else." Now I didn't go with what they recommend you take here. I kept going, but this might help some.
Somehow I got to this. http://www.prohealth.com/library/showarticle.cfm?libid=16720
Then I searched how to get oxygen into the cell. I read this one first. http://www.naturalnews.com/032096_oxygenation_body.html
FINALLY I found this. http://www.gethealthyagain.com/oxygenation.html As you will read, OXY E is not listed as the best way on this page, but with so much crap on the internet, I went this route as it was listed as pretty good and it was cheaper to try. Sorry this was so long. Hope it helps someone.
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This was another link I read and learned a lot. http://www.jerryokungu.org/dev/wp/2013/04/29/
http://www.healthproductscenter.com/Cellular-Oxygenation.html
KJ, it's interesting reading, but is probably somebody thinking out loud and wondering. There are theories about fibro, but none of them proved to be correct. When you are reading watch for studies done, not just one study but several and they must be of a significant number of candidates and another group who do not have fibro to make you really think it means something significant.
this explains the basics ...you might just want to go to actual site, read his information about Vit D and decide for yourself.
http://rationalwiki.org/wiki/Marshall_Protocol
here is actual link ..http://www.marshallprotocol.com/
also note there are sites on first search page that state to stay away from it..
I understand research. I went to college for it. And yes, the above is me thinking out loud. lol. That is why my post started out with me saying I have no clue if this is true or not. All of these links are not about fibro. Some are about the how the body works. And some I read, I didn't even post. This is just how I got to the fact that I wanted to try OXY E. I'm not saying this is true or the way for everyone to go. This is just what I am trying right now.
Thats funny, these experts lol I have psoriatic arthritis as well as RA, both diseases. THE BODY ATTACKS ITSELF. good cells attacking good cells (thinking they are bad cells) and hence all the problems.