A Potent Ne Transporter Enhancer

[ramakentesh]

http://www.ncbi.nlm.nih.gov/pubmed/19491370

[firewatcher]

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.

[Noreen]

Jennifer-

I am so glad that you have been having success with the traditional chinese medicine route. I know you exhausted all avenues within the American medical model and it had to have been beyond frustrating that none could give you significant help.

noreen

[firewatcher]

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.

[issie]

Does a local health store carry this?

[firewatcher]

"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!

[ramakentesh]

Does your chinese herbal mix contain Rhodiola?

[firewatcher]

"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.

[ramakentesh]

I started TCM way back in August 2009. I had some pretty drastic improvements. In hindsight Id probably put most of these down to a possible SSRI effect. I know people who have been on these and described a pretty similar effect. i certainly credit these with getting me out of the POTS slump this time or at least making me feel better about being in it My mix was designed to tonify the blood if I remember correctly ( to be honest I wasnt really listening at this part) and most of the ingredients in my mix have been credited as having a variety of effects on dizziness and vascular insufficiency.

Licorice ive used for many years in the past but alone and prescribed by a doctor. it stopped working for some reason after maybe 5 years or so.

Its interesting that a lot of chinese herbs are now being investigated and found to have a variety of actions.

Dang shen is an interesting example. Its often been used in tonic formulas and soup mixes used to 'tonify the kidneys' among other things but it has been found to have a myriad of cardiovascular effects; involving nitric oxide pathways and increasing blood cell counts amount others.

While I am interested in the TCM view or reasoning behind the effects of these herbs you may find that if a particular set of herbs often had a profound effect on POTS patients then there would be active constituents therein that would explain this.

Malaria is a fine example. TCM practitioners routinely prescribed a herbal mix including a herb called qing hao (a type of artemesia somewhat similar to wormwood) with impressive results. However, western medicine refused to even trial the plant for many years, scratching their heads wondering why their current treatments were all meeting with resistance from the bug. Then one of them swallowed their pride or ignorance (the assumption that if its chinese it must be dodgy) and went and tested a qing hao mix. They soon realised and recently demonstrated that active ingredients in the herb qing hao herb are far better at fighting malarial disease than any other known substance on earth!

Im sure they will now grind the herb up, process it into a pill and claim the patent on it for $$$

Therefore when i look on this forum and on the various CFS forums im always puzzled by how little people have put their trust in TCM or even tried it in many cases. One patient said to me that he doesnt think acupuncture will work (obviously assuming that was all that TCM was made up of). As firewatcher says it has a massive history and many of these herbs contain impressive substances that are slowly being investigated.

The TCM guy I visit - who barely speaks english - told me that most of the Rhodiola that comes through chinese medicine circles is in fact inferior to products from swedan and norway. Ofcourse if we ignored the TCM angle in relation to Rhodiola it has obvious benefits: Its a mild acetylcholine esterase inhibator, serotonin reuptake etc. And for what ever reason my TCM guy added it to my mix recently and took out a few other herbs.

Previously it has been recommended to me at least 20 times and I know two CFS patients from my home town (one who has POTS) who swear by Rhodiola rosea.

You make a good point about mixtures; goji berries in my herbal mix were there for a variety of reasons that I didnt really understand. A chinese friend gave me some in a soup by themselves and they were super hypotensive. I didnt get this effect in the herbal mix but I did in the soup alone.

[ramakentesh]

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.

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. Ashwaghanda might not help POTS but its a pretty tidy antiinflammatory from what ive read.

These herbs as well as blood and kidney tonifying herbal mixes seem the predominant ones suggsted for CFS related disorders and blood insufficiency.

[firewatcher]

"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.

[ramakentesh]

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.

[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.

[Guest tearose]

After a week of adding tumeric as a supplement I had developed headaches!

As soon as I removed the tumeric I was fine again.

[ramakentesh]

"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.

I dont agree. Its not necessarily complex - its just poorly understood. its complex if you get your body tested constantly in every way and then when you inevitably find fairly small irregularities you make the assumption that they are in some way connected. But its just a circulatory disorder. It COULD be complex. But there is no definitive science that demonstrate this to be the case. And so far the contentions for pathophysiology have revolved around the myriad of consequences of one specific abnormality.

I never advocated self-experimentation with herbal supplements. Infact Im concerned when people take some speculative post on these forums as fact and then go and self-prescribe. A friend of mine is a medical researcher and is constantly pushing me to try a variety of supplements but being one of a the few lucky patients who can prettymuch put their POTS in remission I just go with the flow.

Some herbs like valarian and motherwort I have very little problem with. Most doctors would OK this because they arent really very sympathetic to the concept of sensitivities exhibited in POTS. These herbs are barely bioactive. For me id certainly rather take valarian (which has no history as a herb of dependency) than a prescribed gaba activating medication that has the obvious risk of eventual dependency.

I take chinese herbal medicine to be a fairly small step from self-experimentation. These herbs work because they are biologically active. Our understanding of their bioactivity is fairly poor scientifically. There are two commonly prescribed chinese medicinal herbs used in a number of herbal mixtures that have recently been banned in Australia because they have potent carcinogenic properties.

I am quite familiar with the basis for why various chinese medicinal herbal mixes are used having lived in Taiwan and China in the past. To be honest its interesting but has to be taken with a pinch of salt. In some cases it isnt too far a step from Voodoo reasoning for datura activity (containing dark spirits - when infact it contains neurotoxins). I will reiterate that their are biological reasons for their activity that can be accessed with modern scientific investigation.

You are certainly gambling when taking chinese herbal mixtures. Some contain fairly or seemingly benign contents that have fairly extensively been studied - such as panax ginseng, dang shen, licorice, etc., but when you go the speculative edges and accept herbal mixtures that contain questionable or potentially dangerous content then you have to realise that your taking a risk. A risk that I dont see as that far removed from the risk of informed self-experimentation.

Chinese medical practitioners arent really qualified in a western sense.

[firewatcher]

"I dont agree. Its not necessarily complex - its just poorly understood."

I think that it is complex. There are several underlying causes for POTS and understanding of those are frequently poorly understood.

"You are certainly gambling when taking chinese herbal mixtures. Some contain fairly or seemingly benign contents that have fairly extensively been studied - such as panax ginseng, dang shen, licorice, etc., but when you go the speculative edges and accept herbal mixtures that contain questionable or potentially dangerous content then you have to realise that your taking a risk. A risk that I dont see as that far removed from the risk of informed self-experimentation."

Yes, I am gambling. I saw my practitioner for several months before I took any of the herbal medicines, and then I had my pharmacist research each herb for interactions and overdose symptoms. I started slowly, but had good results that were backed up by tests from my regular doctors. Honestly, with POTS any pharmaceutical intervention is really informed self-medication; what works for one will tank another.

"Chinese medical practitioners arent really qualified in a western sense."

Perhaps I have become cynical, but this makes little difference to me. I know some incredibly smart non-doctors and some really stupid doctors. I am also aware that I have found one of the perhaps few, incredibly smart, well trained practitioners. Chinese medicine has a far longer track record than Western medicine and so far, nothing I've been given has had negative consequences like the Western drugs I've been given. I also am fully aware that some of the ingredients in my herbal formulas can be deadly if taken incorrectly or prepared poorly. All that being said, I've seen too many scientific research articles at this point that are backing up the traditional Chinese medicine theories.

[juliegee]

Jennifer-

From what I've seen, you've been both incredibly cautious and intelligent about your use of Chinese herbs. Your improvement has been remarkable. Additionally, you have been so careful NOT to post specifics in order to protect others on the forum, who might not be as cautious.

I think the best practitioners are open to all forms of medicine- Eastern, Western, traditional, and alternative. Sometimes it's the careful combining that can best lead to improvement. Mack's doc at Hopkins is very open to alternative therapies- he actually insists upon some, like integrative manual therapy.

I applaud your openess & am thrilled that it's lead to such improvement!!!

Julie

[yogini]

Another issue with herbal medicines is that they aren't regulated, so the manfacturer's info often isn't verified. So something could be called "gineseng" but not have as much ginseng as you think it does, contain fillers and other chemicals, etc. Personallyl I get confused between the different qualities, doseages, etc. I personallly think of supplements as the same thing as medicine - substances with potentially dangerous/lethal side effects if used in the wrong way. It would be great to get them standardized/moderated and also covered by insurance!

[issie]

Yogini,

I disagree with your feelings of regulating supplements. If you are going to put that power into the hands of doctors, who already don't have time to look into nutritional things - be it foods or supplements - I think, there would be allot more sick people in the world. For those of us who are educated in supplements and herbs - it would be taking away our freedom to have what we have discovered is beneficial to us. It can be used as a medical alternative and should be used only if you look at the sum total of a person and their health - not just go and ask for something; for example, joint pain - and be given cat's claw which could increase the immune system and be detrimental to those who have autoimmune disorders - or echinacea the same consequence for preventing illness - but could increase the immune system. You have to know what you're doing when it comes to herbs and supplements. But.....that being said - there is plenty of information out there that a person can be self taught to learn these things. It is less likely that a deadly reaction will occur with supplements - but very likely that a deadly reaction will occur with prescription medicines that haven't been adequately reported and that doctors take the word of the manufacture in prescribing these things - to later learn that it causes irreparable damage - like fen phen, or vioiox, or so many more that have lawsuits against them. The doctors would not have the time to look into all the supplements that are available and be able to prescribe them to those that need them. There would have to be doctors that would be their forte, there are doctors like them now called functional medicine doctors. They are hard to find and expensive - insurance will not usually pay for their services.

The doctors don't need this added to their list for things to have to learn, nor do we need to have to go to the doctor to just be able to purchase some vitamin C because we have a cold. How much would that cost us - in the long run? I for one, am not a doctor chaser - and rely on myself and listening to my body and what it needs - more than going and trying to explain it to a doctor and them make the decision that I need a vitamin C. One hundered dollars later - I get a script for vitamin C that now cost me another $20 bucks because its a prescription and regulated and my insurance doesn't cover it - because I don't have any because I can't afford it . . . .get the picture. Wouldn't be a good thing at all.

Rethink this please - we need the freedom of will and to use our minds to decide what is best for us. All the power doesn't need to go to the doctors.

Issie

[yogini]

I somehow missed some of the posts in this thread on my first go round. Firewatcher, if you are on a regimen that's working for you, then more power to you! It's very easy for someone to say "x" treatment is gambling and dangerous, but if you've researched it and it's working then that speaks for itself.

Issie, I firmly stand by my post. Having supplements studied does not necessarily put power into the hands of doctors. Things like CoQ10 and probiotics have been studied and are available over the counter. More importantly, I'm reluctant to put things in my body when I'm unsure about their purity and side effects. This doesn't mean I won't do it, but it makes me a lot more reluctant. Millions of people have this concern and therefore don't use supplements. Frankly a lot more people might use them and be benefitted from them if they were better studied/standardized. I'm sure others forum that have more info tham me on them and/or are under the care of a knowledgeable professional and I wouldn't discourage you if this is the case. The beauty of it is that we are all entitled to our opinions and to do what works for us.

[issie]

I'm reluctant to put things in my body when I'm unsure about their purity and side effects. This doesn't mean I won't do it, but it makes me a lot more reluctant. Frankly a lot more people might use them and be benefitted from them if they were better studied/standardized.

Yes, that's why I'm encouraging you to take the care of your body into your own hands. You need to educate yourself not only on supplements - but the prescription meds that may be prescribed to you. Either one can have good or bad consequences. The herbs are usually standardized and guaranteed to be of a certain potency - and there are studies dating back centeries. Usually, fear comes from not knowing - that fear can go away with knowledge. It takes allot of time, reading, education and trial and error. Even if you were to put that power into a doctors hands, and you blindly went to him and he said take this or that - your results could/would be the same as if you had decided a trial yourself. No one knows how YOUR body will react - that's why doctoring is called a 'PRACTICE'. Nothings a sure thing. It's all an experiment.

[yogini]

If you knew me, telling me to educate myself is laughable. I'm stable, able to work and exercise, so not too concerned with fear or revamping my current treatment.

We started off talking about regulation of supplements and the discussion has veered off on a tangent where you are telling me to educate myself and that medicine is "all an experiment". I can see why we disagree on things. While I repsect your right to have your opinion, this not a productive discussion that I care to engage in any further.

[issie]

Not meaning to have offended you. But, in my life experience with people who want the government or doctors to regulate natural supplements - the case is usually that they either don't know about them and therefore don't have the knowledge needed to make choices in their regard or they just rather not have to be responsible for their own healthcare and choose to allow the doctors to tell them what they should or shouldn't do/take. Either way, it's a choice that you make in regard to your own body and what you do with your body is your choice. That's why the choice shouldn't be taken away from us that are choosing to make our own decisions about healthcare - either with taking natural supplements or using prescribed medicines. I choose what I put into my body and will not leave it in the hands of doctors to decide what is best for me. There have been far too many mistakes made with people blindly following the advice given to them - be it either with natural supplements or doctor recommended prescriptions. I choose to make a fully informed decision about either.

We won't agree on this, it appears, thank goodness for freedom of speech and hopefully we will keep our freedom of choice and healthcare - despite people feeling like everything has to be regulated and controlled by someone else.

On to the next conversation........

[ramakentesh]

I think most people on this site and with POTS in general seem pretty intelligent. I am yet to meet a cowboy POTS patients who goes out and experiements at a whim, infact Id wager that the majority of POTS patients are pretty cautious either - as one doctor put it to me because we all have control-freak personalities - or because sometimes pretty minor things can seemingly set off a cascade of symptoms.

If you want to see self experimentation you can easily see it on many CFS websites where people down all manner of supplements and even one site where a guy tries and advocates illegal drugs (ketamine, cocaine) for CFS with OI.

The point of this thread was merely to demonstrate that research is finding plants and so forth that have the ability to increase the activity of the norepinephrine transporter - a problem that may account for POTS in some patients.

[issie]

One thing I'm finding is helping to calm down my system is Olive Leaf. It is supposed to help regulate the NET system and is also a natural antibiotic - for those that feel some hidden virus or bacteria is lurking within. I seem to be doing better with it on a daily basis.

Thanks Rama, for trying to get the thread back on track.