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I've been diagnosed with POTS.....  This thread currently has 2,991 views. Print Print Thread
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JJR
Monday, December 13, 2010, 11:50pm Report to Moderator Report to Moderator

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Kyosha Nim
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At this point, moving would not be a good idea.  The sun felt good today.  My only concern is it probably doesn't help if it's through glass or not, eh?  I don't know the answer to that, but it's hard to get any when it's like a frozen tundra up here.  

You get any snow?


The poster formerly known as "ABNOWAY"

"Finally brothers, whatever is true, whatever is honorable, whatever is just, whatever is pure, whatever is lovely, whatever is commendable, if there is any excellence, if there is anything worthy of praise, think about these things." - Phillipians 4:8
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C_Sharp
Tuesday, December 14, 2010, 2:24am Report to Moderator Report to Moderator

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Sa Bon Nim
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Need UV-B to synthesize Vitamin-D. Only about 5 per cent of the UV-B goes through glass.


MIfHI                            I follow a SWAMI diet.
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JJR
Tuesday, December 14, 2010, 4:44pm Report to Moderator Report to Moderator

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Kyosha Nim
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That's what I was thinking.  Well, not so technically, but I figured it's better outside.  That's not easy.  Maybe I'll try today, it's sunny out!


The poster formerly known as "ABNOWAY"

"Finally brothers, whatever is true, whatever is honorable, whatever is just, whatever is pure, whatever is lovely, whatever is commendable, if there is any excellence, if there is anything worthy of praise, think about these things." - Phillipians 4:8
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Ribbit
Tuesday, December 14, 2010, 8:48pm Report to Moderator Report to Moderator

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Kyosha Nim
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There's a neat house down the road with some acreage for sale.  We'd love to have y'all as neighbors.  


ISTJ, BTD since 5/05.  Battling chronic Lyme disease since ~1985.

"Everything is permissible for me, but not everything is beneficial..."  I Corinthians 6:12

Family: 3 As, 1 B, 1 AB, 1 O
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JJR
Wednesday, December 15, 2010, 12:00am Report to Moderator Report to Moderator

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Kyosha Nim
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I think someday I would like to get out of these winters.  However, real hot is really no good for me too.  It totally drags me down.  And there's a reason they call it "Hotlanta".  I think further east towards the ocean in the south would be better.  Get those cool breezes from the ocean.  Or, if we ever have enough money to do this, we could be snowbirds.  I would probably love that for sure.  I love the winters down where you are.  They're perfect.  They can get a little cold, but it's super mild compared to here and not much snow.  If ever.  


The poster formerly known as "ABNOWAY"

"Finally brothers, whatever is true, whatever is honorable, whatever is just, whatever is pure, whatever is lovely, whatever is commendable, if there is any excellence, if there is anything worthy of praise, think about these things." - Phillipians 4:8
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Ribbit
Thursday, December 16, 2010, 2:41am Report to Moderator Report to Moderator

~W~A~R~R~I~O~R~ Defender, Survivor
Kyosha Nim
Posts: 8,156
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You didn't see my Facebook status.   It was 12 degrees yesterday morning.  Our creek was partly frozen, which I've never seen before.


ISTJ, BTD since 5/05.  Battling chronic Lyme disease since ~1985.

"Everything is permissible for me, but not everything is beneficial..."  I Corinthians 6:12

Family: 3 As, 1 B, 1 AB, 1 O
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Dr. D
Thursday, December 16, 2010, 11:28am Report to Moderator Report to Moderator

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A whole system is a living system is a learning system.’ -Stewart Brand
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JJR
Thursday, December 16, 2010, 6:58pm Report to Moderator Report to Moderator

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Kyosha Nim
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Thank you for your input sir.  I do appreciate it.  

I have been drinking over 2 liters of water a day for the last 2 years.  However, this last bout I changed the way I do it.  I used to fit it inbetween meals.  Now, I get up and drink a liter right after getting out of bed, and actually starting while I'm in.  Then, I make a lemon water drink with a little honey and salt and a whole lemon juiced.  I drink that throughout the day.  I think this is helping too.  Also, I've been eating smaller meals more times a day.  Which, I think goes against some of your teachings, but it seems to be helping me.  

The last time my wife went to the store I asked her to look for the traditional medicinals licorice root tea, but they were out.  I wonder if there is another way to make it?  Or, I just need to find another source.  I used to drink it a long time ago.  Maybe I just need some black licorice.  Hehehhee.  With all the junk in it too.  Yeah right.  

I thank you again for taking the time to respond to my ailments.  I'm getting better with some of the things and this thing has always gone in cycles.  I was thinking NO was part of my problem and need to order some.  But raisins are a black dot on my swami and I haven't been really eating them.  Actually, I never ate them much at all.  In fact, now that I think about it, I was eating them a little around the time I got real sick.  But that was probably a coincidence.  

Anyways, enough rambling.  


The poster formerly known as "ABNOWAY"

"Finally brothers, whatever is true, whatever is honorable, whatever is just, whatever is pure, whatever is lovely, whatever is commendable, if there is any excellence, if there is anything worthy of praise, think about these things." - Phillipians 4:8
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Dr. D
Thursday, December 16, 2010, 8:39pm Report to Moderator Report to Moderator

Peter D'Adamo
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Licorice seems almost custom made for this syndrome.


A whole system is a living system is a learning system.’ -Stewart Brand
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Lola
Thursday, December 16, 2010, 8:48pm Report to Moderator Report to Moderator

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sip right ab tea has licorice as well
and
http://www.4yourtype.com/prodinfo.asp?number=NP042


''Just follow the book, don't look for magic fixes to get you off the hook. Do the work.'' Dr.D.'98
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KimonoKat
Thursday, December 16, 2010, 9:00pm Report to Moderator Report to Moderator

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Kyosha Nim
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Sending you some ABNoWay & hope things turn around for you soon.


Knowledge is power.  SWAMI gives you the diet that will unlock the key to better health, and it's all based on your unique individuality.
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AKArtlover
Thursday, December 16, 2010, 9:16pm Report to Moderator Report to Moderator

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Kyosha Nim
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I got a UVB light from this site awhile back http://lightyears2.com/skin_light.html(don't recall the model) and am happy with it a few times a week for about 20 seconds-- equiv of about 15 minutes in the sun. Don't remember the model. Don't know much about UVC.
Still taking my script supp, but something about this even affects my mood super positively. And I'm making sure to get antioxidents in all this fruit/veg/tea/etc.
UVA is about the only thing that makes it through glass unfortunately.  

AB No Way-- Best to you. ((hugs)) on your journey. Congrats on getting some answers. I like what Lola said about prayer being a diamond. And it's one we can give you, too.


"For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well." Psalm 139:13,14
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san j
Thursday, December 16, 2010, 9:17pm Report to Moderator Report to Moderator

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Stash Tea's Licorice Spice is very tasty. I don't know your spice-profile however. But it's also WARMING, which it sounds like you could use!


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JJR
Friday, December 17, 2010, 2:04am Report to Moderator Report to Moderator

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Stash makes one?  I see that brand sometimes.  I don't do well with some of these teas that have all kinds of other stuff in them like hibiscus and rosehips seems to be two popular additions.  I never feel right after drinking those teas.

Thank you Dr.D.  I'll be looking for that.  

Lola, your link is gastro D.  I take that.  Do they make a tea?  I'll go look.

Thank you kimono kat.  I have been feeling quite a bit better.  It was just a set back and because it was I decided to go further into why.  The diagnosis does explain a lot of how I feel and it's relieving to have a "name".  But the "name" is just that.  I have to heal the whole body in order to "fix" it.  And taking a drug by a doctor isn't going to do that.  The supps I've been taking seem to be helping, as is the right foods.  After all the testing I've done I've rerun my swami and am following it now.  Hopefully that will help.  It didn't change a whole lot, but I think I have to focus on trying to eat more red meats.  Per my swami.  

AKArtlover.  That's a good idea.  My StepDad has talked about that in the past (he's an electrical engineer and has worked a lot with lighting fixtures).  But I know he doesn't have one of those.  I probably should get one.  So it seems to help you feel better?


The poster formerly known as "ABNOWAY"

"Finally brothers, whatever is true, whatever is honorable, whatever is just, whatever is pure, whatever is lovely, whatever is commendable, if there is any excellence, if there is anything worthy of praise, think about these things." - Phillipians 4:8
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san j
Friday, December 17, 2010, 2:50am Report to Moderator Report to Moderator

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Quoted from JJR
Stash makes one?  I see that brand sometimes.  I don't do well with some of these teas that have all kinds of other stuff in them like hibiscus and rosehips seems to be two popular additions.  I never feel right after drinking those teas.



Stash "Licorice Spice" tea has no hibiscus or rose hips. Just some spices. Lovely. It was the first licorice tea I ever tried, back in NY in the 1980s.



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JJR
Friday, December 17, 2010, 4:35pm Report to Moderator Report to Moderator

33% Nomad, calories calories!!!!!!
Kyosha Nim
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I'll look that one up for sure!!!


The poster formerly known as "ABNOWAY"

"Finally brothers, whatever is true, whatever is honorable, whatever is just, whatever is pure, whatever is lovely, whatever is commendable, if there is any excellence, if there is anything worthy of praise, think about these things." - Phillipians 4:8
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Symbi
Wednesday, May 25, 2011, 6:37am Report to Moderator Report to Moderator

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Hi ABNoWay - hope you read this.

I've self diagnosed myself with POTS now.   Dr not helping! My Blood pressure goes down about 20 when I stand up and heart rate goes up about 15.  Sometimes I crave salt and get dizzy and breathe funny like I'm acidic.  Frequent urination and heat intolerance, then salt craving etc.

Having lots of salt helps and licorice root tea.  After the tea I feel like my legs are compressing the veins more when I stand up.  Reckon it's also to do with a lack of aldosterone - my pupils dilate easily when light is shone on them which is a sign.  Get sensitive to light.

Worse time of day is when I cook and wash up standing for many hours I get swollen ankles and dizzy.  Sea salt in water does help though and on meals.  And snacking small meals through the day especially before cooking time.

On the BTD I really took what Dr D said about having breaks to heart for As.  It's helped alot, get up do something physical then back to brain work, or I get more dizzy the longer I sit down before getting up again.

Also suffer IBS, and get heart palpitations (tachycardia) after laying down sometimes.  Cold hands.  Average blood pressure around 100/70.  Memory loss, can't find right word, amnesia     Reactive hypoglycemia, numbness, need I go on but I fit every criteria!

Have been taking supplements for adrenal fatigue and trying not to stress them too much for over a year now and have found it's helped.  According to the ranges on wikipedia I qualified for Addison's disease last year, but my recent test I passed with flying colours and had near the top for initial cortisol reading. Thinking the GTD and supplements (vit c, e, b5, b6, b) have helped!.  They checked aldosterone and though I fasted for salt, it was still in the bottom third of the range.  My GP doesn't know that I should have been in the top of range.  Oh well, don't need artificial steroids (florinef would help) licorice root tea and sea salt and does it naturally.

Also upped the magnesium lately and it's helping me; less headaches.

Anyway enough about me, hope you are going well.  I found this really good link I wanted to share with you.  Found most interesting it doesn't recommend ginsengs for POTS sufferers as it increases mostly already high norephinedrine.  I've been taking siberian ginseng and found it's given me energy and focus, but am only just noticing (I went off it for the ACTH test and was better) it increases salt wasting.  Just thought this could all help you.
Quoted Text

Patients with POTS and/or neurally mediated hypotension should avoid garlic and nitrates in food, which lower blood pressure.  Most patients also need to give up alcohol, coffee, tea, and adrenaline stimulating herbs like ginseng.  Try to avoid eating heavy meals as overloading the stomach decreases orthostatic tolerance by drawing blood to the digestive tract and away from main arteries which feed the brain.

http://potsweb.50webs.com/


INFJ ex-Ghee Whiz, GTD Explorer Sept_09 - SWAMI Mar_10

Family - O+ DH and DD (both hunter-ish)
IBS, Fibro, Hashimotos, Adenomyosis, Oral Lichen Planus, Breast Cancer, Terminal case of Optimism

Revision History (1 edits)
Symbi  -  Wednesday, May 25, 2011, 7:02am
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PCUK-Positive
Wednesday, May 25, 2011, 11:52am Report to Moderator Report to Moderator

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Kyosha Nim
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Regarding Vitamin D, do you get out in the sun much, do you wear sunscreen, moisturisers etc. I don't know my vit D levels but i feel much better outside in the sun. I stopped wearing any sunscreen and now use a hat after a while. and i don't use any cosmetics stuff like moisturiser any more.

Whenever a doctor say to me, which they do often "we don't know what to do but take this drug" I have a rule - I don't take it. I find out what the drug is supposed to do, in detail and find an food alternative whether it is eating less of something or eating more or something.

although to be honest we don't really ned to bother with doctors any more. touch wood!


Kind Regards PC. FIfHI Swami III Pro

Partner (F) is O+(Non) MN. Duffy Fy(a+b+),  Lewis (a+ b-) Fructose Malabsorber. Explorer.
DD (7) is O+(Non) Lewis (a+b-) (Fructose Malabsorption)54% Gatherer ?

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PCUK-Positive
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Gatherer Rh+, NN, (lewis a+ b-) [Duffy Fy(a+b+) ]
Kyosha Nim
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I had a look at those links to Louise hay and the cortice technique.

The chap in the cortice techniques talks about the brain being upset and stressed and later in life this comes out as IBS, strokes etc.

Having changed to the BTD i don't expect to have ibs and the like later in life. so I'm not sure if this now makes so much sense.

I don't mean to put a dampener on it it is just my tiny initial observation. perhaps it helps relax you which isn't a bad idea anyway.

if your diet can change all of this stuff, and i know it can, including behaviour and focus. perhaps they are claiming too much.

I shall continue listening, i just wanted to mention this before i forgot about it.


Kind Regards PC. FIfHI Swami III Pro

Partner (F) is O+(Non) MN. Duffy Fy(a+b+),  Lewis (a+ b-) Fructose Malabsorber. Explorer.
DD (7) is O+(Non) Lewis (a+b-) (Fructose Malabsorption)54% Gatherer ?

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PCUK-Positive
Wednesday, May 25, 2011, 1:41pm Report to Moderator Report to Moderator

Gatherer Rh+, NN, (lewis a+ b-) [Duffy Fy(a+b+) ]
Kyosha Nim
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Symbi, get yourself a dish-washing machine darling oxo


Kind Regards PC. FIfHI Swami III Pro

Partner (F) is O+(Non) MN. Duffy Fy(a+b+),  Lewis (a+ b-) Fructose Malabsorber. Explorer.
DD (7) is O+(Non) Lewis (a+b-) (Fructose Malabsorption)54% Gatherer ?

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Amazone I.
Wednesday, May 25, 2011, 1:48pm Report to Moderator Report to Moderator

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Kyosha Nim
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go for some *Effortil* drops....


MIfHI K-174
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Symbi
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lol PC!  Great idea, just what I need.  Imagine the even more cooking I'd do if I had one!  Side dishes everything.  Carrots juliene with honey mon cheri!
So right about doctors, if we can tune into our bodies we always know more.  And there is so much information in books and on the internet.  Though of course, they may have good instincts and more general knowledge.  Pull pushing is all I get and they tell you not to look on the internet but you need to to find any general advice.  

Amazone   - thanks for the tip, couldn't find much info.  It may be only available in Sweden and Germany.   http://www.drugs.com/international/effortil-plus.html



INFJ ex-Ghee Whiz, GTD Explorer Sept_09 - SWAMI Mar_10

Family - O+ DH and DD (both hunter-ish)
IBS, Fibro, Hashimotos, Adenomyosis, Oral Lichen Planus, Breast Cancer, Terminal case of Optimism
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Amazone I.
Thursday, May 26, 2011, 12:37pm Report to Moderator Report to Moderator

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Kyosha Nim
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and Switzerland Symbi I'm going for more infos and sending it you you


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Symbi
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Thanks for the info Isa!    Got it translated by google to English (wish I knew more languages like you! - guess I'm more the mathematic type  ).  
It looks promising except it has sulphites.  That's not good, they don't agree with me exacerbating asthma.  At least found out my favourite molasses isn't sulphured yesterday (increased my iron levels nicely).  But like chicken man, it's everywhere!  it's everywhere!

Really, if I eat enough salt (and keep high potassium foods at a minimum especially in am) then it doesn't happen.  I wonder if POTS overlaps with adrenal fatigue?

Just started taking Ginkgo Biloba again like I do during winter to help the raynauds syndrome (hands and feet turn frozen and white).  One day in and I already feel the brain working better!  Just read that one of it's mechanisms of effect on cognitive functions explained by modulating cholinergic function, antioxidant action and blood thinning.  http://www.ncbi.nlm.nih.gov/pubmed/11090296.
The cholinergic effects might interest you ABNoWay.  I also suspect cholinergic problems especially with dry mouth and muscle fatigue.

I have to watch that it doesn't thin my blood too much, cos it might increase the low blood pressure.  Plenty of salt and licorice root tea should counteract that.  Still have some garlic too.


INFJ ex-Ghee Whiz, GTD Explorer Sept_09 - SWAMI Mar_10

Family - O+ DH and DD (both hunter-ish)
IBS, Fibro, Hashimotos, Adenomyosis, Oral Lichen Planus, Breast Cancer, Terminal case of Optimism
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Amazone I.
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Kyosha Nim
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Symbi dearle sorry for the sulphites...didn't knew it but what's about thinking over such a thema ....Louise Hay writes: Not enough of love while being a child;  thoughts going into this direction: hey what's da matter... it won't work anyway... ... new pattern...agreement;) : I'm able and willing to live in the now, my life consist in joy!!!

ahem yup to whom it may concern   


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