Something You Should All Know

[Guest Hanice]

As most of you probably know.... my health has been seamingly improving over the last few weeks.

I was thinking long and hard (its really hard with the brain fog lol) and I suddenly remembered something I changed in my life that is most likely the reason I've been feeling better.

I was a strict vegan when I had my kids, I had been doing this crazy "diet" for about four years. Barely (if any) fat. No cheese, no meat of any kind. I had briefly spoken to a really nice and caring holistic dr on the phone which used to have Chrones Disease when he began his career (I read part of his book called Edibolic Stress) First he asked which were my symptoms and I went ahead and told him.... He said it sounded like I might have pots, which surprised me that he knew what it was. Then he asked me when it started, I told him it started after I gave birth to my baby. Then he asked me what my diet was like and I told him I had been a vegan for four years, he told me that that had to change, that that was probably the reason for my pots symptoms..

I had already been to a cardiologist that told me that my omegas were dangerously low.. btw

So this holistic doctor told me to try eating animal products with every meal. Including butter, cheese and meat. He told me to call him after a couple of months to let him know my progress (I thought that was so nice) and I just realised. I do eat meat but not too much, but I eat cheese and butter now. I think the doctor was probably right! He had told me that since I had two babies back to back, that they drained me from everything.

I'm not saying to go out and eat like a pig or to eat unhealthily, buy if you dont eat meat or enough fat.... then that can be either causing or making your dysautonomia/pots worst. The body NEEDS fat and cholesterol to be healthy! A balanced healthy diet needs a good amount of fat. Food for thought!

His name is Dr. Michael E Rothman and he's really nice. If you'd want more info on him you can pm me or google his name.

Edited October 13, 2013 by corina

[badhbt]

When my illness hit I was on a mission to get to 15% body fat. I was down to 19. I was on a strict diet which consisted of pretty much no to low fat. I was also exercising way too much. I truly think this was my trigger. It is the only thing I can put my finger on. Funny thing is I am eating pretty much vegetarian now. I think just because meat kind of grosses me out.

The other thing that doesn't make sense to me is that my fasting blood sugar is borderline high. I have never had a high blood sugar like this. I am sure it is all related some how.

Thank you for the info!

I just took two fish oil supplements haha

[Guest Alex]

Thanks for sharing.

One question - how did your dr determine that your omega 3 levels were low? (as a side note, I tried taking omega 3 supplements a while back, but I noticed that they make my palpitations worse for some reason)

[badhbt]

Oh great Alex, I just swallowed 2 of them...lol

[MomtoGiuliana]

My doctor at one point recommended increasing both salt AND fat intake. Of course I was pregnant at the time (and not diagnosed with POTS). I did feel better with increases in both. He said the increased fat would stabilize blood sugar (as I recall); I would have dizzy episodes if I did not eat something about every hour. I also am someone who tends to eat a low fat diet and am vegetarian, and have always been on thin side.

[Guest Alex]

Badhbt, sorry about that. Fwiw - I always get the weird, less common side effects. I'm sure you're going to be fine

[Chaos]

Since getting my MTHFR results I've been reading a ton on methylation and B vitamins and energy production. Apparently, from what I've been reading, there are some forms of B vitamins that you can really only get from animal sources unless you supplement them. These are critical to the whole energy production/metabolism process, so maybe this is part of why you feel better when you eat them?

[Guest Hanice]

Alex

It was an advanced blood test that also tested my Lpa cholesterol. I dont know its name. I also learned (from this very same test) that MY blood in particular turns fishoil into bad cholesterol and they recommended I shouldn't take it because it wouldn't be good for me. Its good for some and bad for others apparently.)

[Guest Hanice]

Chaos

Not only vitamins but also essential amino acids! And I'm sure there's other things I just dont know of.

[Guest Alex]

Thanks for the clarification. I'm guessing you had a lipoprotein panel...

Edited October 13, 2013 by Alex

[Guest Hanice]

I'm not sure Alex, but it also had the vitamin d so I'm not sure if it was many different tests or one blood panel. I will look through my papers tomorrow and let you guys know.

[sue1234]

That's interesting on the "need more good fats" issue. I suspect that I don't absorb my dietary fats due to (1) my gallbladder being removed, and (2) my stools now float.

I don't feel good at all on fish oil. I've tried it a few times prePOTS and they made me feel bad, kind of like POTSy, for a few days.

I am definitely not afraid of fats. I eat it wherever I care to without any repurcussions in labwork(so far!). Mostly plant fats, like nuts and oils. I eat meat, but not necessarily every day. I probably eat meat 5x week.

[Guest Hanice]

Badhbt and Momtogiuliana

Thats very interesting to me. Since when I gave birth I was even more meticulous about the food I ate and I suspect that could have definitely been my trigger. I dont like eating animals! I was an animal activist for almost five years. I did raw veganism for a few months aswell. I hate thinking that I'm eating animals :-( I eat a lot of ground turkey breast and butter on my popcorn is rich in omegas and cheese.

Chaos

I can't think anymore. All that methylation yadayada is being blocked out by my horrible brain fog. I was looking through my tests and that test I told you guys that said stuff about my omegas, that MTHFR is in there too but I dont understand it. It said my MTHFR was at high risk..

Sue

Thats crazy! I did hear once a long time ago, that when your poop floats its because its full of fat. I dont like fish oil because it can be good for some and bad for others. Now that I found my papers, I will take pictures of them and post them here tomorrow if you guys dont mind.

I would like to hear what more people have to say about this fat business! I'm sure there are peopke out there with reasons for pots that can't be explained by this, but what about the others that dont have explantations for pots?

[Guest Hanice]

When my illness hit I was on a mission to get to 15% body fat. I was down to 19. I was on a strict diet which consisted of pretty much no to low fat. I was also exercising way too much. I truly think this was my trigger. It is the only thing I can put my finger on. Funny thing is I am eating pretty much vegetarian now. I think just because meat kind of grosses me out.

The other thing that doesn't make sense to me is that my fasting blood sugar is borderline high. I have never had a high blood sugar like this. I am sure it is all related some how.

Thank you for the info!

I just took two fish oil supplements haha

Badhbt

I stopped eating white flour, white sugar, white rice ect ect. My dad's side is diabetes prone and I made myself hate white processed food. No fried food, no crustations. Hopefully that will help. I guess the only thing we can do is eat more vegetables and less processed food.

[Chaos]

Did it give you a result for your MTHFR gene test? There are usually 2 that they test in a doctor's office. The C677T and the A1298. Depending if you are heterozygous or homozygous and on which one, there are different implications from the tests. Not sure what they mean by "high risk". The C677T result, if you are homozygous, is apparently linked with increased homocysteine levels in the body which has been linked in the past with increased risk of heart disease, etc. Recently I think some research articles have come out refuting that however.

[looneymom]

Hi Hanice,

I found that post and bumped it up for you. The post is called 90% Better What has helped me. Amino acids could also be a key to help someone with POTS symptoms. I will explain this later in another post.

Rachel

[bebe127]

Hanice,

I'm interested in this dr. Could you pm me please? I know that we live around the same area, but all I can find on this dr. is that he is in NJ? Sounds quite intriguing.

Thanks,

Bebe

[bebe127]

Hanice,

Thank you so much!! Glad to hear you are doing so much better As you know, I'm on a hiatus from my illness, ha, ha!! In the words of Dr. Phil..."How's that workin' for ya'?" Well, it's working some days and not so much others LOL!!

Interesting about the fats. A few years ago, in the spring of 2009 (I began to feel odd shortly after) I was on the "Six Week Body Make-Over Plan". I cut out sugar, salt, and went low fat and basically ate fairly healthy and exercised, riding my bike 9 miles a day. I wanted to lose a few pounds and just be "in-shape", I wasn't overweight or anything, just wanted to become "healthier". Then, in the fall of 2009, I was dx. with POTS. Before all this, I would skip breakfast, have a late lunch and eat dinner. I figured that this "diet" would be a good way to boost my metabolism and "get healthy". Now, after reading your post, and others' I'm starting to wonder, although my blood work has usually come back fine. Just makes me think... Oh, and I also had a friend that wanted to try the plan and didn't last one day. She had to call her husband to pick her up from where ever she was because she was feeling all weird. Looking back on it now, she was feeling really rather "postsy". She almost kicked me when she saw me next as she related her horrid experience. Hmmmm.....

Now, I feel so ill all the time that I usually have a nutribullet shake (that I will now be adding coconut oil to) each morning, usually skip lunch, just cuz I'm feeling ill and not hungry and have a decent meal for dinner, thanks to my Big Handsome that cooks I don't even exercise anymore because it leaves me so sore.

Anyhoo, I will seriously consider calling the dr. after talking it over with the hubs.

Thanks again,

Bebe

[Chaos]

Hanice- Interesting that you have the CC mutation on 1298. (That's the same one I have.) That apparently decreases your ability to produce B4 by 70%. B4 is a critical ingredient in the Krebs cycle which is used to produce energy in the mitochondria of your cells in order for you to function. This is a gross simplification based on what I've been reading over the last several weeks so you should probably look into it on your own and don't take my word for it. My understanding is that it's best, if you choose to supplement, to use methyl folate and methyl B12 as those of us with this mutation can't utilize the more standard form of B12 or folic acid. It would appear however that you have a doctor who has ordered a big group of tests so I am assuming he/she would be advising you how best to proceed with the information they've gained from the testing.

[AshleyPooh]

You know what's interesting about this. Reading up on Adrenal dysfunction , especially insufficiency, they pretty much say the same thing: you have to eat certain types of fat, b/c it keeps your cortisol reserves up. If you eat too low fat of a diet, it depletes your stress hormones, causing symptoms of insufficiency ( which are also very similar to dysautonomia).

[Guest Hanice]

Ashley

I'm telling you.. There is something to this fat eating stuff!

[badhbt]

Chaos- which supplements do you use and have you noticed a difference?

[Guest Hanice]

For people who want to know about the MTHFR genotypes, this explains it pretty simply. http://www.stopthethyroidmadness.com/mthfr/

[Chaos]

badhbt- In early Sept. my doc told me to take 15mg of l-methylfolate which he's having me order on line. I did notice some improvement very quickly but I'm my own worst enemy because every day I felt better I overdid things and ended up back in bed. In mid Sept. he had started me on another med which was really a bad idea and wiped me out for a couple weeks. Now that is out of my system and I'm heading back upward again.

I'm also just starting to play around with this protocol http://forums.phoenixrising.me/index.php?threads/b-12-the-hidden-story.142/%C2'>

I have avoided reading all this methylation stuff because it was too overwhelming and I was too brain foggy, but now that I know I actually have the gene mutation, the more I read about it,the more it makes sense and the more it seems like it may provide some relief of symptoms at least. I'll let you know. (Having taken the antivirals and having that help clear a lot of the brain fog helped too so I can finally understand a little bit more of what I'm reading. It's still overwhelming though! )

[Chaos]

I'll try again as the system dropped my links I had put in.

This is the link to the protocol I'm using http://forums.phoenixrising.me/index.php?threads/b-12-the-hidden-story.142/

This is the link to the modifications to the protocol that have made since it was first published in 2009 http://howirecovered.com/active-b12-therapy-faq/#changed

Hopefully they come thru this time.