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90% Better!!! What Has Helped Me.

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Hello! I know I have not posted anything in a long time, and partly that is because I have been doing much better!! I would like to share with all of you what has helped me, in case it could possibly help someone else too.

I dont want to mislead any of you, because I am not "cured" of dysautonomia. My symptoms however are greatly improved, and some days I feel as if I have none at all. My heart still races when I walk up the stairs, and I suspect it always will. I am realistic in my expectations and do not expect to ever be "cured". I have Ehlers Danlos and unfortunately you cant change your genes (....or can you?).

I also realize that what works for me may not work for someone else. We are all unique and our causes may be different, therefore our treatments may also be different. I do hope that you will at least give this a fair trail because I know how much we have all already suffered. It is a sacrifice, but if it helps then it is worth it!!

What has helped me:

I'm not going to bore you with the details of how I came across what I did, or why it works. If you would like an explanation of those things you can message me. Otherwise, this will be fairly straight forward. Just the facts ma'am. :). Here we go!

* Drinking only natural spring water without the minerals removed. This means NO reverse osmosis, NO distilled water, NO steamed water-- just

natural spring water run through a filter. I have to get mine delivered to my house and it is fairly expensive...but not as expensive as doctors


* Eating 100% Paleo 100% of the time. NO cheating. Grains and sugar must be avoided like poison. I do drink a small amount of milk (see below)

and eat a small amount of cheese.

* Taking a high quality vitamin D supplement daily. If you would like the name and dosage of what I take you can message me.

* I'm not afraid of fat!!! I eat plenty of coconut oil and fats from meats such as bacon, pork, steak. Eggs are my best friend (as long as you do not have an allergy). I know I said I wasnt going to explain things, but fats are CRUCIAL for optimal neurological function (this has been proven in many scientific journals and is well accepted throughout even mainstream medicine).. Enough said.

*Taking a high quality Vitamin B 12, B1, and B complex Daily. The doses I take are significantly higher than are typically recommended.

*Taking at least 1000 mg of Vitamin C daily.

Last but probably the most important of all:

* ALL of my dairy products (milk, cheese, yogurt, etc) and my meat products MUST be hormone free. Vegetables and fruits must be organic when possible.

After implementing these dietary changes I began to feel better within a few weeks (actually felt worse for a few weeks). After several months (about 4) I realized how much my life had changed! Many of my symptoms were gone and I began to actually live my life again. I am able to exercise now, which has further helped my symptoms.

I really cannot emphasize to you enough what a dramatic change this has been for me. I really hope that this might help you in trying to get better. Is it hard to live this way? Yes.. it is. It takes planning, motivation, and a whole lot of will power. Sometimes it totally ***** (especially when all your friends are eating pizza and ice cream and you're chewing on an organic celery stick). Is it worth it though?? YES, IT DEFINITELY IS!!!

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Just wondering about the coconut oil. How much are you using? Are you using it in recipes or smoothies?

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Wonderful news. It sounds to me as if you had a component of leaky gut syndrome alongside POTS.

Many people have another major illness including fibromyalgia.

Diet and chemicals and meds are often underlooked.

We also dont realize the chain of events, sometimes gut, then immune, then allergic, then adrenal, then pots, then heart problems.

Tracking it back, not surprising some of us trace it back to gut problems and either deficiency or junk

going into your bloodstream being attacked by immune and lodging in your tissues setting up shop

and making you REALLY sick.

I think you can post your meds, i dont think that would constitute giving advice. Its just a journal of what

worked for you.

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Thank you for the info!

I am curious, do you eat out, and if so, where/what do you eat to stay on track?

I am definitely trying to make dietary changes, & looking for organic food to make at home, but we do eat out a few times a week.

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Great news Rissy - good on you for sticking to your plan. I think you have the right attitude in that it is very much a matter of managing the symptoms and getting to a point where you can be as asymptomatic as possible. I think for many of us it will mean changing our diets, doing more excercise, getting more sleep. I am not saying that these things 'cure' POTS only that they help!

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love coconut oil put it in a smoothie cook with it :)

heres my update and im on her same lines..... but just started ....so im still SICK SICK SICK


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Sorry for the delay in posting! I'd like to answer some of your questions-- hopefully I get them all! If I miss some, just ask again lol :).

Coconut oil- YES!! I use lots of coconut oil, and olive oil. Those are really the only two oils I use. I stay away from all the rest!!! (including if it is just an ingredient IN something).

Medications - I am not on any meds at all, just vitamins (some of which are higher than normal doses) and the minerals found in my water.

Diet- as far as the Paleo goes, I should say what I follow could be considered a modification because I do still consume milk and dairy. I was tested a while back for a casein intolerance and was found not to have one. Because of this, I see no reason to remove it from my diet. Your body may be different though and you may be better without dairy. If your not sure, you could always just try it and see how you react. I'd give it at least a month. The biggest thing is really the grains and the sugar. I also avoid corn (which is really a grain), rice, and potato, legumes and peanuts (which are legumes). I do have sweet potatoes sometimes :).

Heres a sample day (every day is different, but you get the idea):

Breakfast: 3 hormone free eggs cooked in coconut oil, 4 slices of hormone free, nitrate free bacon, and 1/2 an avocado

Snack: some nuts and seeds with a piece of fruit

Lunch: Wild caught Salmon salad (I make my own mayo) over a bed of romaine and kale lettuce. Olive oil and lemon, or vinegar dressing. Throw in some tomatoes, raisins, walnuts, and the other 1/2 of avocado, and yuum!

Snack: a piece of fruit with almond butter, and roasted vegetables in olive oil sprinkled with full fat, hormone free cheese.

Dinner: Vegetable stir fry in coconut oil with grass fed, hormone free ground beef. Sometimes I use a curry sauce which is delicious!

Dessert: A small glass of whole milk (hormone free), and 88% dark chocolate.

I really cant emphasize enough the liberal use of fats and the avoidance of hormones in your food (this goes for meat and dairy). I was worried I would gain weight at first, but I have actually lost 30 lbs by eating this way-- even with all the fats!! I dont buy anything low fat or fat free. Basically how it's found in nature is how I try to eat it :).

Hope I answered all of your questions!

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Thanks Rissy. I have found the coconut research center online. The studies are very exciting to read. I am experimenting with the coconut oil and the milk. My son really likes the milk. This oil has so many heath benefits. Thanks for sharing.

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just started using coconut oil too :-) I drink almond milk but may do both almond milk and coconut milk , why not :)

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Hi Rissy, thank you so much for sharing your story. I have been reading up on the diet since your post and am trying to start next wk. My husband is basicly on board, but still a little doubtful. Could you share this part of your experience? Did family support you?

Wishing you the very best.

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The diet is basically what the human body (Homo sapiens sapiens) had about 40,000 years of experience eating. Cereals and lactose were introduced far later. So it makes some sense that it would at least lessen the inflammatory load on the body and perhaps help autoimmune disorders (assuming POTS is autoimmune which is itself an assumption) and inflammation.

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A random question - what do you mean by 90% better?

You can do 90% of the things a normal person can do?

Or you feel 90% better every day?

Or your bad days are 10% of your life?

How functional are you? Do you work, do you go out with friends, do you travel? Are you non-symptomatic 90% of that time?

Thanks! And keep up the good work!!

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Thanks for your post and help! I particularly am helped by your sample diet. When you say larger doses of the B vitamins, what range do you take? Did you learn this from a nutritionist, others or trial and error?

Again, so good to hear you are doing so well!

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  • 7 months later...

Bump this post up for Hanice.


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Thank you Rachel! I'M Sure this post is going to help a lot of people. I'm actually inspired to try eating eggs. Fat has definitely helped me aswell. I'm going to definitely use the coconut oil I just bought last night in EVERYTHING! lol Even on my skin.

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