RichGotsPots

Sorry I know a bunch of us up our salt intake to very high levels and it helps but just wanted to make everyone aware of the link. Japanese people are among the healthiest in the world yet they eat a ton of salt mainly through seafood and soy sauce and stomach cancer is their only really high risk of cancer.. http://news.bbc.co.uk/2/hi/health/3370141.stm Salt raises 'stomach cancer risk' Not a good idea People who eat lots of highly salted food double their risk of stomach cancer, research suggests. Scientists from Japan's National Cancer Centre Research Institute caried out an 11-year study of 40,000 middle-aged Japanese. The risk of stomach cancer was one in 500 per year for those men with the highest salt intake - twice the rate for those who ate the least salt. The research is published in the British Journal of Cancer. For women, the risk was one in 1,300 per year for those who ate the highest amount of salt, compared to one in 2,000 for those with a relatively salt-free diet. Common cause of death The study underlines the importance of limiting salt intake in our daily diet. Dr Tim Key Gastric or stomach cancer is the second most frequent cause of cancer deaths worldwide - with an estimated 776,000 deaths in 1996. Scientists know that high salt intake can induce atrophic gastritis - a precursor to stomach cancer. Salting, pickling and smoking are traditionally popular ways of preparing food in Japan. Pickled vegetable and noodles are rich in sodium and low in vitamin C. As the Japanese diet has become increasingly westernised there has been a noticeable drop in the rates of stomach cancer but an increase in the rates of breast and bowel cancers, emphasising the role of diet in the disease. Lead researcher Dr Shoichiro Tsugane said: "Although there is a steady decline in its incidence, gastric cancer is still the most common form of cancer in Japan. "In addition to salt intake our study also shows that smoking and low consumption of fruit and vegetables increases the risk of stomach cancer particularly in men." Dr Tim Key, an epidemiologist for Cancer Research UK, said: "This study shows strong associations of stomach cancer with the intake of highly salted Japanese foods including salted fish and pickled vegetables. "What we don't know is whether it is specifically the salt in these foods that can cause cancer or a combination of salt and other chemicals. "In Britain stomach cancer rates are much lower than in Japan and these types of highly salted foods are not widely consumed. "But limiting salt intake is also important for reducing the risk for high blood pressure and cardiovascular disease. "The study underlines the importance of limiting salt intake in our daily diet not only to reduce the risk of stomach cancer but also to protect against heart disease."

Jangle I think you are looking at the 1 in 2000 odds like gaming odds or like insurance type of odd. These odds are based on past actual deaths which means almost with certainty they will happen in the future. But in gambling it's not certain at all. For example Pepsi one time had a billion dollar under the cap contest and warren buffets reinsurance company insured the contest for about 10 million because the odds were like 1 in 100 million chance someone would win. No one won, see so those are odd that no one might ever collect, in medical odds people have already died and that's not including disabled or near death... The only thing that is for sure is if you don't take them you won't be that 1 in 2000 for sure.. To put it on more way, if 1 in 2000 kids were born with a heart defect would you call that heart defect rare? In a small town with 20000 people 10 children every year would have it and after 10 years worth 100 children in the town 10 and under would have it... Lupus isn't a syndrome, there are many types of lupus and with every illness there are mild to severe spectrum even with a cold? There are many types of syndromes, aids is a type of syndrome, parkinsonian is a syndrome, Down is a syndrome... The problem with NET as a base is that the researchers looked at the NET gene that they found with the same abnormalities in the twin girls and they tested 40 other patients and didn't find the same abnormality. I'm not saying its not there, I'm just saying nothing they have shown thus far prove that NET def is a base... I've ask a lot of people and many people have not even gotten their ne levels tested at all... How do we know that NET def isn't as prevalent as MCAD, mito, etc... So maybe NET def isn't a base it just gets dysfunctional in some patients.. Since odd are important, would and you said 1 in 20 is rare then 2 in 40 who have that NET gene abnormality should also be considered a rare finding and not a base. Like you said in Lupus they all have a specific clinical finding of a common autoantibody issue.. I don't think pots research has uncovered that yet... I also believe MCAD, mito, ect are caused by pots and not separate cofactors, but that's just a gut feeling, eds I feel might contribute to causing pots just like cancer or diabetes or Parkinson's can be primary and pots secondary.. And please don't get me wrong I think it's great they are testing these twin and I hope answers come out of it. Would be great to find twins who are older and one has had pots for 10+ years and on doesn't then to map their genes and review all clinic and environmental factor ect... Rama has said he know of this type of research going on now, so I pray they discover more pieces.. It's obvious there are many ways to damage the ans system or trigger flares in dormant systems and I admire that the researchers are trying to trigger pots to see what happens. I just think they are only at the front gate and need to step inside and take a closer look because objects may appear closer than they really are ;-)

I have low iGg subclass 2 which means I'm prone to infections especially of the lungs. Im not sure if I had this def before pots but I never got pnemonia until I had pots, so I suspect they are related. So far I have some supplements like baby doses of zinc throughout the date and if I feel sick some olive leaf, oregeno, garlic and spirilina....

Rama good points mate. And don't worry we are talking about the something... . Jangles- pots has so many symptoms that's why it's a syndrome so what ever study says they can induce pots symptom, I don't believe it. What exactly are the symptoms? We all have a mix of tons of symptoms. It's not the same as saying they can induce a heart attack which has very little clinically observed symptoms. I think you are giving that study to much weight. I do however think they probably induced a had full of the same symptoms, but again pheo probably has the same symptoms they induced bet blocking NET. So I think all they proved was NE plays a role, which I think most pots hyper research already alludes to. Maybe this study does go a little further. I just don't think it's a simple matter of the levels we have. It could be a new found sensitivity. I wish there was a way to test to a synaptic chain reaction to neurotransmitters or something like that. For example NE is synthesized by Dopamine yet dopamine levels aren't at higher abnormal level, so that probably means the dysfuction isn't at that stage, but what about the stage after NE is transmitted? NE is most potent acting on a1 receptors? A1 receptors are types of g-protein receptors and Dyfuction of these g-protein receptors have been linked to diabetes, allergies, cardiovascular defects, depression and certain forms of cancer... One of the best A1 meds I found is Prozosin http://en.wikipedia.org/wiki/Prazosin they use it to treat high BP, anxiety, PTSD, and panic disorder. But here is the problem with a straight of NET/NE issues, NE straight up increase BP by vasoconstriction, some of us have dysfuctioning BP, sometimes it's high sometimes it's low and sometimes it's normal. By decreasing NE by using an antagonist med this causes a lowering a BP, but what happens when my BP is already lowered when I walk. If NE is higher when I stand and walk then my BP should be higher when I do both as well, why does my BP drop when I walk or stand for more than 10 minutes, it can't only be do to NE is my point. We would have a better answer if they did test NE levels at least 6x or so in a tilt and during exercise. The they could say, ahah I can clearly see how everyone's levels are dysfuctioning by going up then dropping and then they can connect the dots.. If infect everyone has different degrees of NET issues or the NET issues are happening in different areas of the body at different levels then wouldn't we need targeted treatments to those areas? More research is needed before I think the docs can target everyone across the spectrum.... That's why I caution you. 1 in 20 btw is not rare, 1 in 100,000 is rare. Would you take Tylenol is 1 in 20 people died form 1 treatment of it? We would have a lot of dead people in just one day... 1 in 2000 is still risky to me, it means if 2 million people took it 100 would die from it.... Maybe some chemo meds have that same risk but what people on chemo are facing is nearly certain death if they don't try it where as I don't think we are in the same boat... I'd have to be 100% sure this was going to cure my pots for life... Then maybe I'd give it shot...

Well, I saw mystery diagnosis show about this girl who needed to eat in the middle of the night to. Her parents would have to give her certain types of food that would last longer in her system. I wish I remembered what it was called. You don't sound like you have it to her degree, just mildly... If she didn't eat it was dangerous... I wish I remembered at it was called :-(

Dana, cool research about NET and the heart. And I hope there isnt any mutation at all lol

Rama- You're right about there not being any link yet. I'm not always pointing to studies because I'm "thinking outside of the box" sometimes... Many people I've spoken to feel there is a link but cant put a finger on it, that doesnt mean there isn't on, it could be a deeper micro issue that doctors don't know about yet. Take Micro circulation issues, doctor dont know much about that either.. I'm not pointing to any hormonal treatment at all. I think its some kind of sensitivity rather a level the docs can test for. One time when I got allergy testing my doc mentioned that I'm allergic to myself, which he said was rare. What if its some kind allergy like thing. Many people point to mast cell issues, which are basically unusual allergies. Histamine releases can trigger many things. What if its an all out wacky allergy. Almost like autoimmune but different, instead of our immune system attacking us it's just setting of weird reactions...I know it sounds a little far fetched, but I'm fetching so i hope you take it for just ideas and not facts or anything. Just food for thought..

Seems to be divided, I know where they got better and can tolerate their pots, I know some that had horrible experiences and now wont try anything and lastly I know some that have been trying for over 10 years and still havent found much to help yet after 10 years they just got better on their own... Oh one last group got better from a med or meds and after 2-3 years wasnt helping at all...

The symptoms of pheo are very similar to pots so of course whose to say they didnt cause pheo and not pots? Only thing that is sealed is the pots has something to do with NE issues. But really how do they know its not a sensitivity issue? Many people develop these odd sensativities to light, noise, heat, food, and many more things, so maybe at certain time people get this odd sensitivity to NE because of "____" (something mysterious...)

Hey sorry for all the technical terms. Catecholamine (Epinephrine (adrenaline), Dopamine and Norepinephrine (Noradrenaline)= the messengers in the body that act on behalf of the Automonic nervous system (ANS). If a big scary bear was 10 feet in front of you, your ANS would take over command and send these messengers out to different parts of your body to help you cope or run and escape the bear. It heightens all your senses (dopamine) and can send your body into hyperdrive (your heart rate would go up for example, mostly because of adrenaline and noradrenaline). So what the docs are trying to see is why some of us have high norepinephrine levels when we are upright, because that is not normal if there is no stress or attack.. Norepinephrine Transporter= is the system the ANS uses to keep our norepinephrine levels normal when we arent attacked. So by having high upright levels the 1st suspect is the regulating device in our bodies (NET). There could be many other suspects besides that. For example a computer might malfunction because of a software error or the hardware is getting old or it may be attacked by a virus or maybe the hardware is malfunctioning because a virus attacked it... So even if we find NET issues, what caused it?

Dana I thought you were staying offline for awhile lol it's so addictive I know.. Anks for the article though! I really think the treatments are not attacking the root causes. Take a car for example, imagine it can't pass inspection because it's co2 emissions are too high. It would be hard to bring it to standard by using better quality gas, usually you have to fix the exhaust. The problem in our case is how do you fix the organ causing the dysfuction? I don't think supplements are the key. We either need a medicine that will repair the organ to previous normally functioning state or to get a regulating device, similiar to a pacemaker for the heart.. Another way to describe it is, with my own blood pressure issues. I have high BP when upright, normal when laying and when walking or standing for 5 minutes I have low BP. So how can any doctor ever give me a med to lower my BP? When I walk it will be too low. If I get a BP med to raise it, when I stand it will be too high. All the meds we need are to stabilize these dysfunctions, and if we are lucky repair the damaged cell or organ causing them.. This is where I don't believe we are close yet or even closing in... Sometimes we see some benefit by using low doses, but nothing is repairing or stabilizing. They may seem to be stabilizing because we all fall on different levels. So someone may have mostly low BP, so using a BP raising med for the most part helps. But then you take that med in combo with a bb to lower the hr and boom it's too low. In theory on of the balancing acts that I most admire but seem to work seldom it with a bb and midodrine at the same time, one lowers BP one raise and it's a balancing act and doing two good things at once. Bb lows hr and midodrine raises BP and prevents pooling... Too bad they both come with major side effects and are seldom tolerated for a long time. But again nothing is getting repaired and only a few things are getting stabilized.... This approach needs to go further in my opinion because it has potential....

The locus coeruleus is activated by stress, and will respond by increasing norepinephrine secretion, which in turn will alter cognitive function (through the prefrontal cortex), increase motivation (through nucleus accumbens), activate the hypothalamic-pituitary-adrenal axis, and increase the sympathetic discharge/inhibit parasympathetic tone (through the brainstem). Specific to the activation of the hypothalamo-pituitary adrenal axis, norepinephrine will stimulate the secretion of corticotropin-releasing factor from the hypothalamus, which inducesadrenocorticotropic hormone release from the anterior pituitary and subsequent cortisol synthesis in the adrenal glands. Norepinephrine released from locus coeruleus will feedback to inhibit its production, and corticotropin-releasing hormone will feedback to inhibit its production, while positively feeding to the locus coeruleus to increase norepinephrine production.[5] Notice how HPA plays a role!

"The locus coeruleus (also spelled locus caeruleus or locus ceruleus) is a nucleus in the pons (part of the brainstem) involved withphysiological responses to stress and panic." "The locus coeruleus is the principal site for brain synthesis of norepinephrine (noradrenaline). The locus coeruleus and the areas of the body affected by the norepinephrine it produces are described collectively as the locus coeruleus-noradrenergic system orLC-NA system.[3] Norepinephrine may also be released directly into the blood from the adrenal medulla." Part of figure the pathway is to figure out where all the dysfuctional instructions are coming from, is it the Locus Coeruleus?

If my theory is correct, the issue won't be fixed by simply taking a cortisol replacement like a steroid. See it's all about digging deeper and deeper on the pathways to the process of what's causing the dysfunction. It's just about putting the pieces together on why our bodies fight or flight protection is on the fritz. Cortisol I believe plays a role but just like catecholamines are not steadily out of sorts same goes for Cortisol. It's just a disabling dance between all of these chemical reactions in our body. Why I implicate HPA is because it's dysfunction could explain why many of us that weak immune systems among other issues.. If we do find a cure for this, its going to have to be a multi-level attack of like 5 treatments. But my hope is that for the future when people can catch it early we can figure out how they can stop it before it progresses too.. Does every chemical and every action in the body come from the brain or do they have their own intuition, so to speak from DNA instructions.. "The ANS is controlled by brain areas such as the anterior cingulate cortex, the insula, the amygdala, and the hippocampus (Critchley et al., 2002, 2003; Matthews et al., 2004)."

Issie- Exactly. What we have is NET dysfunction or postural deficiency but term doesnt exist in the medical books yet..

Rama, i think its just the language barrier mate. I'm not saying they dont know what they are doing or aren't brilliant in fact. I'm saying they need to do a lot more studying before it can be considered conclusive. When I look back at a lot of POTS research or articles brought up on the forum over 5 plus years ago, it hasnt lead to much yet in terms of treatment. You of all people should know this because you have posted on all of your supplement or herbal experiments on here. If there was some treatment looming around the corner where 50% of us could all have benefits from then I would understand. But If you look at the study carefully they say they tested these twins, detected the mutation, but then when they tested other pots patients later on it wasnt conclusive. So it would be great if they were on to something all I'm saying by "far off" is a lot more testing needs to be done first.. And I think in just about every POTS article I've read at the conclusion of the article it always says but more studies need to be done... In the nine or so years you have known that you had pots how may discovers turned out to be nothing... On Dinet.org's list of POTS causes there are some 26 possible causes listed, this one not included.. So I'm just not excited about it they, we'll see..

http://www.alexanderinjury.com/blog/rituxan-causes-deadly-brain-infections/ "DrugLib.com compiles statistics and information on the benefits and dangers of prescription medications attributed 113 wrongful deaths to Rituxan during the calendar year 2007. PML was just one of the causes of death associated with Rituxan, as well as personal injuries: blindness, lung disease, and gastrointestinal ulcers" "In May 2009, a study from the Feinberg School of Medicine at Northwestern University linked Rituxan to PML. The study identified 57 cases of PML, and 51 of those patients died." Jangle- Where did you get your statistics from? btwn even a Vaccine is considered a Biologic..

Rama, the thing is NET deficiency = higher than normal NE levels almost like Pheochromocytoma. The difference is the researchers that link NET def to hyper pots mean that this NET deficiency only occurs while standing. Read this and you can see the connection http://www.ncbi.nlm.nih.gov/pubmed/17102094

Rama, yes I meant NE, my doc refers to it as adrenaline but its really called noradrenaline... if postural hypotension isnt the M.O. for Hyper patients what is it the M.O. for? Firewatcher- pheo NE levels are high supine and standing, but in hyper they are supposed to be high just upright. If you read Dr. Grubbs article on hyper pots he lists the criteria. If you have an article from Vandy on hyperadrenic pots that states their criteria, can you post a link, it would be interesting what they use to decide...

Does POTS qualify as a "heart condition" hmmmm I tell people I have a heart condition because its easier to explain that way, but honestly some of us must have amazingly strong hearts to have our heart pump at running speed half the day...

Here is something that look interesting it shows the link between cortisol and catecholamine problems. "An abnormally flattened circadian cortisol cycle has been linked with chronic fatigue syndrome,[2] insomnia[3] andburnout.[4]" MAYBE THEY SHOULD ADD DYSAUTONOMIA :-) http://en.wikipedia.org/wiki/Hypothalamic%E2%80%93pituitary%E2%80%93adrenal_axis "At the hypothalamus, fear-signaling impulses activate both the sympathetic nervous system and the modulating systems of the HPA axis." "Increased production of cortisol mediates alarm reactions to stress, facilitating an adaptive phase of a general adaptation syndrome in which alarm reactions including the immune response are suppressed, allowing the body to attempt countermeasures." This would explain why some of use have lowered immune systems. "Glucocorticoids have many important functions, including modulation of stress reactions, but in excess they can be damaging. Atrophy of the hippocampus in humans and animals exposed to severe stress is believed to be caused by prolonged exposure to high concentrations of glucocorticoids. Deficiencies of the hippocampus may reduce the memory resources available to help a body formulate appropriate reactions to stress." Florinef is partially a Glucocorticoid... " Stress and disease The HPA axis is involved in the neurobiology of mood disorders and functional illnesses, including anxiety disorder, bipolar disorder, insomnia, post-traumatic stress disorder,borderline personality disorder, ADHD, major depressive disorder, burnout, chronic fatigue syndrome, fibromyalgia, irritable bowel syndrome, and alcoholism.[5] Antidepressants, which are routinely prescribed for many of these illnesses, serve to regulate HPA axis function.[6] Experimental studies have investigated many different types of stress, and their effects on the HPA axis in many different circumstances.[7] Stressors can be of many different types—in experimental studies in rats, a distinction is often made between "social stress" and "physical stress", but both types activate the HPA axis, though via different pathways.[8] Several monoamine neurotransmitters are important in regulating the HPA axis, especially dopamine, serotonin and norepinephrine (noradrenaline). There is evidence that an increase in oxytocin, resulting for instance from positive social interactions, acts to suppress the HPA axis and thereby counteracts stress, promoting positive health effects such as wound healing.[9]"

Here's another video about Brit and Dysautonomia

The most interesting chapter for me was Page 111 chapter 5: http://books.google.com/books?id=Xm82f5q89kYC&pg=PA97&lpg=PA97&dq=%22NET+immunoreactivity%22&source=bl&ots=TldGhD8jkT&sig=OyzZ-Lo8SlfPrjwOSfykwNj1bPA&hl=en&sa=X&ei=kQX9T67XK8Tl0QHq9-WMBw&ved=0CEIQ6AEwAg#v=onepage&q=%22NET%20immunoreactivity%22&f=false

The science seems far off to me. This is based on one pair of twins really? Yes something is obviously going on with our NE transportation system. But that's no surprise right? NE is a major sympathetic neuro transmitter, we have dys function of our sympathetic system right? The key is looking closer not at genes but at function paths and interaction with synapse.. I agree finding out that some gene is altered, in anyway, will help us have more proof we have dysfunction, but gene testing is not cheap and often not covered by insurance. I know I have pots already from my titl test, I know my ne is somewhat high from testing. Now what? Is the it the high part of is it the my sensitivity to it. Am I allergic to my own NE at a certain level, or at a certain level does it trigger some other wackiness? Come on there has to be more here!

Biologics can be lifesavers but at the same time they can be risky. The ones that affect the immune system are especially helpful and especially risky. Rituxan has caused a few deaths, check out their list of side effects. Then again does everyone who has dysautonomia have autoimmune issues? I dont know but the jury is still out.. There are so many levels to target on the NET gene where do you begin. I dont think you can just stab in the dark at gene therapy. It would be great to find the lorenzo's oil of dysautonomia but even that did cure ALD. Sorry I cant get excited about this :-/