firewatcher

"We had a guy a few years back who was a TCM practitioner trying to cure cancer with a mix of herbs that sent four people into the ER. LOL." And I know a very competent Cardiologist (MD) who triggered two heart attacks in a friend with inappropriate medication. THIS is why I say DON'T play with these herbs yourself, even the pros screw up! There does not seem to be the same respect for herbal drugs that there is for pharmaceuticals, but they are just as potent, and just as deadly. We have a complex condition that is very poorly understood; I don't believe there will ever be a "miracle cure" in a pill or dose of herbs.

(((((((((((((lieze)))))))))))))))))) My kids are 9 and 11 and they have no idea who I really am. My oldest was too young to remember when Mommy was fun, and my youngest never knew that at all. I've been living a life suspended for over five years. While I may not know what it is like to be normal, I remember feeling better than I did with a POTS dx. To give you hope: I have made more positive progress in the last six months than I have in several years. For the first time, in a long time, I feel GOOD! Improvement CAN happen. You COULD recover completely. Hang on, don't give up. Adding you to my prayer list....

Hot off the medical presses: Bacteria, intestinal injury and reactive oxygen species Enteric commensal bacteria potentiate epithelial restitution via reactive oxygen species-mediated inactivation of focal adhesion kinase phosphatases Phillip A. Swanson IIa,1, Amrita Kumara,1, Stanislav Samarina, Matam Vijay-Kumara, Kousik Kundub, Niren Murthyb, Jason Hansenc, Asma Nusrata, and Andrew S. Neisha,2 + Author Affiliations Departments of aPathology and cPediatrics, Emory University School of Medicine, Atlanta, GA 30322; and bDepartment of Biomedical Engineering, Georgia Institute of Technology, Atlanta, GA 30332 Edited by Ralph R. Isberg, Tufts University School of Medicine, Boston, MA, and approved April 15, 2011 (received for review July 14, 2010) Abstract The mechanisms by which enteric commensal microbiota influence maturation and repair of the epithelial barrier are relatively unknown. Epithelial restitution requires active cell migration, a process dependent on dynamic turnover of focal cell-matrix adhesions (FAs). Here, we demonstrate that natural, commensal bacteria stimulate generation of reactive oxygen species (ROS) in intestinal epithelia. Bacteria-mediated ROS generation induces oxidation of target cysteines in the redox-sensitive tyrosine phosphatases, LMW-PTP and SHP-2, which in turn results in increased phosphorylation of focal adhesion kinase (FAK), a key protein regulating the turnover of FAs. Accordingly, phosphorylation of FAK substrate proteins, focal adhesion formation, and cell migration are all significantly enhanced by bacterial contact in both in vitro and in vivo models of wound closure. These results suggest that commensal bacteria regulate cell migration via induced generation of ROS in epithelial cells.

"From my brief reading of availably TCM texts on the internet it seems that Rhodiola is commonly used in the same tonics as Rehmannia, Dang shen and withania." Exactly my point. Used with other herbs. The Chinese system uses the other herbs to direct the action or reduce the side effects. They would never use one herb singly unless they were cooking...but NOT for medicine. My fear is that people would latch onto a single, medicinal grade herb and use it like a vitamin or supplement and do harm.

"Does your chinese herbal mix contain Rhodiola? " In Chinese Rhodiola is hong jian tian. Being cold and astringent, it is not indicated for me, according to my diagnosis. Since I am cold all the time and need to retain fluids, this herb would harm my system after a possible, short boost. It has a LOT of hype surrounding it in the current health/supplement circuit.

"I agree with Issie. Why does it matter where/what the opinion is based on?" I think that so many of us have had our sanity and symptoms questioned for so long that we absolutely have to "medical proof" to be able to say: "SEE! I told you I was SICK!" There are also a LOT of snake oil out there that can get us hurt badly. Even healthy people without POTS have ruined their health with fad health-care. "The biggest gripe I have with this forum is that most are not willing to take a leap of faith here. Everything has to be in a study, proven by some big shot researcher or acknowledged by mainstream docs for it to be an OK topic of discussion. I see the negativity against "alternative medicine" all the time on here and it ticks me off at times." I'll confess that I am particularly bad about this. I am a nerd. I read medical journal articles. I also have seen the greatest improvement in my symptoms by seeing and following the direction of an alternative practitioner. I see M.D.s once a year now and go to my Chinese Medicine practitioner for everything else. I am slowly weaning myself off of Western pharmaceuticals and moving to Chinese herbals. Is there hard "medical science" to back this up? Nope. No studies on Chinese Medicine and POTS, ever. But it makes sense to me: a holistic theory used to treat a whole body condition. I think sue1234 just wanted to target the discussion to get ideas to discuss with her docs.

Dana, Actually the research is finding the opposite: the host's immune response is DEPENDENT on it's gut bacteria! Gut Bacteria plays key role in immune response Stress wrecks intestinal bacteria and immune balance Our immune system may be weak because our gut flora is out of whack.

"Does a local health store carry this?" Issie, it (Qing Feng Teng) can be found as a whole herb that you process yourself or as concentrated extract. Again though, these studies on individual Chinese Herbs are for pharmaceutical reasons...looking to make a drug. It would NEVER be taken by itself! I get very worried when medicinal quality herbs are recommended as "supplements," it is a very quick way to end up sicker than you are and maybe dead!

And a link between connective tissue disorders and gut bacteria: [intestinal microecology in some systemic connective tissue diseases]. [Article in Russian] Zh Mikrobiol Epidemiol Immunobiol. 2007 Jul-Aug;(4):38-41. Gul'neva MIu, Romanov VA, Shilkina NP. Abstract In patients with systemic connective tissue diseases were studied. The species structure intestinal microflora was characterized by decrease of dominating status of anaerobic bacteria and increase of role of opportunistic bacteria. The number of Lactobacillus decreased significantly. Bifidobacterium and Bacteroides was also decreased in number while their detection rate did not change. Opportunistic bacteria with hemolytic activity acquired greater significance in the forming of patients' intestinal microbiocenosis. Significant increase of Staphylococcus and opportunistic Enterobacteriaceae detection rate and density of intestine colonization was detected. Colonization of the intestine by S. aureus was revealed. Comparative analysis of the qualitative and quantitative structure of the intestinal microflora in patients with systemic lupus erythematosus and systemic scleriasis revealed similar patterns. However, colonization of the gut by opportunistic intestinal bacteria, Candida and microorganisms with hemolytic activity was more frequently observed in patients with systemic scleriasis. PMID: 17886374

I think that this theory has definite merit. The gut/brain connection is just starting to be explored, but has hard science behind it. Gut types article Stress affects gut bacterial balance Gut bacteria can control organ function Cross-talk between gut bacteria and brain Sorry for so many Science Daily articles, but it was the quickest way to find shortened versions in plain english.

nowhat! "I'm experimenting and will agree it's absolutely frustrating... While I need to exercise to help my health - and feel committed to doing this ~ quite simply put --- it comes with a cost ... I'm trying to 'outsmart' my own body so the cost isn't so great... But everyday is a new experiment." I Sooooo hear you! "Trouble is it wipes me out - ridiculously ~ where I have to lay down to rest - like a kid at nap time ~ Then comes the battle with stiffness and soreness etc...(I'll blame eds for that)" Ditto, I wish I could blame EDS for that. After two years of watching my Pilates sessions, my PT has now decided that I probably have a connective tissue disorder. She says I am just too flexible for a 40 year old. "I have been this way with exercise since I was a little kid - always unable, always exhausted - only got by in college with bowling (60 avg) and volleyball (I'm tall and blocked at the net - and that was all I did).... Never a cartwheel, never a pull up or chin up or rope climbing ~ class A gym class nerd (I'll blame eds on that one too)" I HATED gym class in school, especially the running. The teachers were always so nasty, telling me to stop being lazy, to just pick up my feet... I was always the most active one of my family. I finally found Karate and weight lifting. One summer, in my twenties, I worked out with three guys...intent on losing that "out of shape" label. I did weights and the treadmill, I could never last more than three minutes on an eliptical or stairmaster. I always thought that my target HR was 220-my age and I hit it every day for 45 minutes. I thought that it would come down as I got conditioned, it never did. I looked great, but still couldn't break 4 mph on a walk. Pilates works for now, but only once a week. Sarah4, I consume around 3-4 grams a day. Much of it is in Thermotabs and sea salt. I take the salt tabs only with food to stop the nausea.

I do Pilates with a partner and private instructor once a week. I also attempt to walk a mile at a moderate pace and light weights once a week if I am not too tired. Until a month or two ago, I was too sore and exhausted from my once-weekly workout to do anything else. Since doubling my sodium intake, that has greatly improved, but I use "normal" daily activities to exercise.

Noreen, I got so tired of hearing: "Well, you've got _________, but there is nothing we can do except watch it." My kidneys, my pituitary, POTS... Chinese Medicine has treated all of these for over 2000 years. Since starting the Chinese Medicines, my kidney function has improved (something I was told COULD NOT happen,) and my hormones are finally coming back on line: my estrogen and testosterone levels are almost normal and I can concentrate my urine for the first time since November of 2007. Honestly, I lucked out. This practitioner, while not an MD, is highly trained in the Herbal Medicine tradition. He told me at the beginning that it would take a long time (over a year) to see real improvement. It has been a little unpleasant; these meds taste really nasty! He has his own Herbal Pharmacy and makes all of the medicines custom tailored to the patient. We have both been surprised at how quickly I have improved, but I have radically changed my diet to follow a modified "Chinese Food Therapy" diet, eliminating foods that would harm my system (cold, sweet or raw vegetables) and eating warming, tonifying foods (long list, don't ask.) As far as exercise is concerned, he has told me numerous times NOT to do it. This is the only thing that I have not followed his recommendation on. He chastises me regularly about how it tanks my system and that anything that taxes me this greatly impairs my body's ability to regulate and heal the underlying disorder. These aren't supplements, and TCM will not ever prescribe single herbs...they don't work that way. While I have not been on Qing Feng Teng, I have been on combination formulas that include herbs very similar in action.

I have not been on this herb (Qing Feng Teng) but I have been on Chinese Herbal Medicines since September of 2010. I have cut way back on my Klonopin, dropped the dDAVP and am almost ready to drop my BB. I have made more progress with Classical Chinese Medicine in the last six months than I have in the last four years. During this time, I have exercised regularly, without improvement until I started the herbs. I am seeing a licensed TCM practitioner and cross referencing my drugs and herbs with my pharmacist.

It isn't Dr.s Levine and Stewart, but it combines both theories: Exercise protects heart via NO "The researchers found that voluntary exercise boosted levels of an enzyme that produces nitric oxide (eNOS, endothelial nitric oxide synthase). Moreover, the levels of eNOS in heart tissue, and nitrite and nitrosothiols in the blood as well as heart tissue, stayed high for a week after exercise ceased, unlike other heart enzymes stimulated by exercise. The protective effects of exercise did not extend beyond four weeks after the exercise period was over, when nitrite and nitrosothiols in the heart returned to baseline."

I think that this study as well as the article is plagued with poor word choices. "Grinch," while an attempt at quick recognition, was a very poor choice of imagery by Dr. Levine and trivializes both the condition and the suffering of the patient. "Cure" is the completely wrong word to use, treatment would be a far better choice. If any of these people stops exercise, then they WILL return to their previous state of illness. Even the most avid supporter of Dr. Levine's protocol, and author of a POTS-blog, admits to relapse after illness or cutting back on the protocol. While an effective treatment for many POTS patients, exercise is no CURE.

Go to Mayo, Vanderbilt or Birmingham's Mitral Valve Prolapse Center at UAB. There is NO ONE in the Atlanta area or even the state of Georgia. Trust me, I've looked. I drive an hour to see a cardiologist who "has heard of" POTS and another hour in the opposite direction to see an endocrinologist who thinks he knows about autonomic dysfunction. Fortunately, my GP is former Mayo and is willing to play ring-leader to my three ring circus of healthcare. He lets me do my own research and try treatment options with specialist (the other two, slightly informed physicians) supervision. The major, award-winning cardiology group for Atlanta (starts with a P) has no cardiologist (of a group of 84) that was willing to take me on. PM me and I can get more specific.

Hmmm, I was told at a young age to never tan, or even attempt to. The dermatologist told me that I just did not have enough melanin in my skin. I always burned, peeled and white as a sheet. I had my first skin cancer removed at 13 after never having serious sun exposure. I have LOTS of moles and pale brown blotches, but no overt loss of pigmentation. If I didn't have such a red face, I'd look like a spotted ghost! Maybe I should pursue this too.

I don't know, but I am pretty sure that the HR is individualized according to the results of your HR during the 10 minute stand test. I am curious if once conditioned, are ALL the symptoms gone, or just the HR response to standing. What about brainfog, headaches/coathanger pain and general stamina?

More gut/brain info and speculation: Gut bacteria can affect onset of MS Gut bacteria Coopt our Immune system

What's your gut type? The above article might play into the gluten/caffeine sensitivity issue as well. Obviously we are all different and what works for one will not work for another. Your gut type probably effects a whole host of reactions that have not been previously investigated, from immunity to brain levels of serotonin and dopamine, and how well we metabolize or absorb drugs and foods.

I think that BP is easiest to understand using garden hose analogies. When your BP is higher, either there is more water/blood going through your hose/arteries (blood volume expansion) or the diameter of the hose is narrowed (constricted blood vessels.) When your BP is lower, there is less water/blood (hypovolemia) going through the hose, or the diameter is larger (vasodilation.) If your HR is normal, but your BP is elevated, I'm guessing that you are constricting due to all those chemicals we have swamping our system, like epinephrine and norepinephrine. Those same chemicals can cause shaking/tremors, dilated pupils, anxiety, and bunches of other not-so-fun responses. For whatever reason, you probably have enough blood moving through, so your HR is normal, but the POTS is causing a catecholamine discharge. Low blood sugar, cold, exercise, excitement, etc. can cause all these through similar systems. I have a nasty tremor without my beta blocker. My BP is usually 100/70 but it has gotten very high both with tachy and brady. I don't know if I helped, but I certainly understand.

"Since then I have been very careful with my diet, drinking a nice cup of morning prune juice and things are better, still move slow better at least are moving! " I have found that warm prune juice is much nicer tasting and moves things along better. Plus it is more like coffee that way. A slug of black cherry juice in it helps with flavor too.

I am assuming that you've had your thyroid checked? I was hypothyroid after my second child, but it resolved and my TSH and T4 are normal now, but I have a "globally enlarged, firm, rubbery thyroid." I can feel it, I can see it and so can all my docs. I get the same tight feeling and absolutely cannot wear collared shirts or turtlenecks. I wouldn't be surprised if it is found that we all have some kind of mast cell reaction though. I just read that you also have GERD, do you also have a "slow swallow?" My Dad had severe GERD and he would get a tight throat feeling as well.

I think the emphasis on "core strengthening" comes from the need for postural stability, not blood flow. That being said, core muscles are all along the pelvic floor, spine and abdomen, so toned core muscles work more efficiently to squeeze the blood back into the tissues and bloodstream. Since most of us have orthostatic/postural issues, I'm guessing that stronger cores would allow us to be less accident prone and less prone to injury if we faint or grey-out. I could not find any particular emphasis on core training and POTS, but definitely did for athletes and manual labor and injuries.