Just Watched Tv; A Person Has Improved Their Dysautonomia

[sue1234]

I don't know if anyone watches the VERIA channel(on Dish network), but I've been watching The Incurables on that channel for almost a year. Tonight's episode was on a young women who had dysautonomia, diagnosed by the Cleveland Clinic, and didn't really improve with her regime of meds. A few years later she had her blood analyzed for specific nutrient deficiencies(at a specialized clinic) and she started on a high-protein, low carb strict diet, and finally was able to relive her life. She had gotten to where she fainted in school all the time, so had to stay home.

Now, apparently she was NOT anemic according to all of her mainstream testing, so it can't be said that she just felt bad for being anemic. Remember, she was diagnosed with NMH at the Cleveland Clinic, with a 25-30%(?) reduced blood volume, and all the fancy testing that goes with dysautonomia. One can assume someone looked at her CBC somewhere along the way. But, the increased meat and clean diet helped her tremendously!

Makes me wonder. I always tell doctors I FEEL and ACT anemic, but all the labs say good. Is there something that mainstream testing is missing?

You can watch the 30 minute show here if you didn't catch it on VERIA. This feed comes from the website that does the specific nutrient testing. Click on the story for Lena Wolfe.

http://video.yourfuturehealth.com/

[MamaTrain]

That was very interesting Sue! It makes me feel better that the nutritionist guy I am seeing may just be on the right track with the diet & supplements. Thanks for sharing the story!

KC

[delphicdragon]

Thought this was interesting.

If you are B12 deficient, you have macrocytic anemia (Big red cells).

If you are iron deficient, you have microcytic anermia (Little red cells).

Here's the kicker...

If you have BOTH, you have a normal red blood cells!

Mainstream testing misses a LOT. I've probably been B12 deficient for about 5-7 years at this point (Maybe longer) No one tested for it until this year. When I started supplements my bruises that I've had for at least 15 years went away!! I was also profoundly Vitamin D deficient. No one tested for that either. Many things have to be off for it to show up on a CBC.

Sara

[flop]

That sounds like the diet pattern that I am supposed to be following (I'm not very disciplined when it comes to food!). I have seen a CHEK practitioner who assessed my Metabolic Type and determined that I am a protein type so should eat a high-protein, high-fat, low carb, no grains diet. I must admit when I did follow her advice I felt more alive than normal.

I think that just eating good "clean" food and avoiding processed food and chemicals can make anyone feel healthier. I know that for me aspartame (an artificial sweetner) causes major problems and makes my brain-fog much worse. I stopped drinking squash with aspartame in for 2 months then went to stay with my parents. Their tap-water tastes terrible so I was putting blackcurrant squash in it to make it palatable. Within 3 days I had really bad brain-fog that improved when I stopped drinking the blackcurrant. I now drink bottled water or fresh orange juice at my parent's house.

Flop

[futurehope]

I watched the documentary last night. Were we told WHERE or WHAT LAB tests for nutritional deficiencies?

Does anyone on here know? TIA

[sue1234]

Futurehope,

The video did list the labs name underneath the lady that talked about Lena's nutrient deficiencies. I found it and will post the link.

She stated that for some people that absorb the nutrients from their food, they can benefit just by eating a "clean" diet. It's the people that CAN'T absorb the nutrients, no matter how healthy they eat, that need to find out their deficiencies for sure and take target supplements along with diet to get their levels up to par.

I know I for one am not absorbing nutrients, as I am newly diagnosed Celiac so have some intestinal damage. I know I have been diagnosed as having osteopenia at age 45 due to not absorbing my nutrients. I am going to address my celiac and other endocrine things being looked at, and after that I believe I will have this nutrient testing done. I've paid so much money out of pocket over the years anyway, so what's a little more. I asked a doctor 20 years ago when I was having some panic episodes if we could test my vitamins and minerals, and he just blew it off, saying it was too expensive. Now I have any opportunity.

[sue1234]

Me and my brain! I forgot to add the link to the testing facility:

http://www.yourfuturehealth.com/

[extern14]

Very interesting. Thanks for posting this. I am always looking for new ways to improve. I would love to have my life back! I don't feel that I have had all the testing to see what it is I really have and then how to treat it. I will definitely look into this. Thanks!

[gomindy21]

This is encouraging! Thanks for posting this!

[futurehope]

I've emailed customer service, and left a message with the company to find out where their "collection centers" are and if they assign you a specific time to show up?

I've been extensively tested in the past by "alternative doctors" and have been assigned supplements that exacerbated my existing stomach problems. I cannot take any B vitamins unless the supplement is dessicated liver. I cannot take any minerals without my stomach/esophagus lining becoming inflammed.

So, other than altering food intake, I doubt I can take any supplements.

[sue1234]

Let us know what you find out.

I know when I've ordered my own lab tests before, most of the collection centers are usually either a Labcorp or Quest.

[tiger]

Diets such as the atkins or south beach diet which are low carb are very bad for your body. Your body needs carbs, especially your brain. This is very hard on your kidneys and causes the stress hormones to be released in your body which then cause vasoconstriction. That's probably why she felt better because her body is in a state of stress and will also develop anxiety.. not good

[sue1234]

Well, I think the documentary mentioned that the specialty lab said she needed to improve her iron status, and she had too high insulin levels, thus needing to eliminate the simple carbs. You have to really watch it to understand it--what I said in the beginning of this thread is just a "synopsis" of the show. I think that's why she had to change her eating style. They did not say it was permanent. And they did mention that it was tailored for her needs. What they test and recommend seems to be tailored for what each individual is lacking or needing for their specific body.

[futurehope]

Sue1234,

I spoke to one representative who was not overly knowledgable. She mentioned a lab about 23 miles from me, not a name that I ever heard of. I can't remember it. Then she said they could(?) also draw blood at a hospital center she named about 20 miles from me. Honestly, I couldn't understand why the hospital would accommodate them? Apparently, they assign you a time to show up? You're fasting. And it's 6 -7 vials or more of blood drawn depending on the tests you picked. Yikes!

I asked for the scientific proof for the claims they make and for the values they consider "normal". This lady knew nothing.

My take on it: A nurse founded this "method" because???? I did not get to speak with her or her representative.

My opinion: If you have exhausted all possibilities for finding a medical reason for your condition, and you feel like spending the $400 for somebody to give you a report, go ahead.

Frankly, I don't trust this kind of stuff where a nurse figures out what "normal" is, gets some labs to do something and prints a report. I would have to know a lot more before I believe this stuff.

The premise of what nutrients a body needs sound plausible, but how they determine what is "normal" for you sounds a bit shady to me.

Maybe somebody on here knows more?

[sue1234]

Futurehope,

I'm not surprised that someone answering the phone didn't know any specifics of the how/why. And that an RN runs the show, supervised by a panel of doctors, doesn't bother me. Thanks for calling in to see what you could find out.

I did look through the list of what they test, however, and it seems to be the same stuff that I've been tested for already through the years. I'm sure everyone here has had these tests also. The only thing I have never had tested was the zinc and omega-3 levels. The omega-3 levels are what most interest me, and you can order that test by itself. I will start a new thread on some interesting stuff I've been reading over the last few days about a subset of the omega-3s.

I thought the story of someone improving might be useful or inspiring to many of us. I by no means "endorse" this option. I just see one person's story that went beyond what most of us have reached. We each can take it or leave it.

[bjt22]

Well, I have always been anemic. Not the root of my problems, but no doubt a part and parcel sort of thing.

I have to admit that I do better on a diet high in protein and lower in carbs. I'm borderline diabetic, and I've dealt with hypoglycemia for years, no doubt in at least part due to insulin resistance as well as autonomic dysfunction. While I wouldn't say that such a diet can cure one, it does definitely make me feel better.

[MelissaCrystal]

YES!!

This is wonderful to hear, because this is how I've put my POTS into remission! A high protein diet with basically no carbs (they make me feel horrible). I think this is a HUGE key you guys. It is for me.

I don't know what it is about meat, but honestly, it's been the only thing that has worked for me my whole entire life. Mostly chicken or turkey---that's basically all I eat, and I'm functioning like a normal person. I still get crashes, and I have symptoms that I doubt will ever go away, but I'm able to live a normal life because of my new diet. I have a job, a new boyfriend, and I'm doing everything for myself right now.

I don't know what it is about meat, but there's something in it that fixes me...that gives me enough fuel of some sort to do everything I need to do. It's not "energy" it's just a certain type of fuel that I can feel my body needs. I've been trying to research it, and all I've found that I was missing before was that meat has creatine. I'm sure there is other stuff in the meat I need that perhaps I was missing, but I've heard that a lot of people who supplement creatine feel a lot better overall and they develop more muscle.

I've always had problems developing the correct amount of muscle in certain places, and I dislocate my limbs all the time. I thought it was just because of EDS---but I'm such a borderline case because my skin isn't that bad. It's just my tendons and muscles that are bad. I'm wondering if I'm onto something here....

If you guys look more into creatine---it's a LOT like Florinef, which might be why Florinef works on a lot of us, but perhaps we're missing some creatine?

I could be totally wrong, but I just bought some creatine today and I'm going to test it out =) I'll let you know if I feel a ton better or something.

BTW-- I'm not going to be taking the full dose, I don't need to bulk up, I'm looking into what our body naturally produces and I'm just going to supplement half that amount to see if it makes any difference. I've already done extensive research on creatine because my last boyfriend wanted to use it, and I asked my doctor and everything and small doses are very harmless.

[ramakentesh]

Two years after I first got POTS i was running marathons - and I was as fit as I had ever been. Still got dizzy if I sat for too long and all the fitness and diets in the world didnt stop me from relapsing.

I did and always have since I got POTS felt much better on a high protein diet. I have no idea why but meat and eggs and those kinds of things make me feel better. But I dont credit them as the reason I got out of a relapse. I put that down to licorice, time and graded exercise. Wish it would work this time though LOL.

For me after 7 years with POTS it fluctuates.

[MomtoGiuliana]

My endo had recommended increasing protein and fats (along with salt) in my diet to even out blood sugar. For some reason POTS patients seem to be sensitive to even minor blood sugar variations over time. It did help me with adrenaline surges, but I do not eat a high protein (and more particularly fat) diet these days. Increased salt and fluids has been the diet change with the biggest impact--for me.

[green]

I am skeptical of this television show "the incurables" the episode I watched was melodramatic as if targeted to an audience of people who have serious health problems. The way they played sad music when the girl and her family discussed her symptoms, and then switched over to triumphant music when talking about YHF was corny. And the way they hyped up how traditional medicine failed to help by emphasizing the doctor's warning that missing a dose of florinef could kill the patient seemed designed to play into the frustrations of sick people.

I am inclined to suspect that YHF had three episodes made about their lab, for reasons other than merit. blood-test based nutritional recommendations have been around for decades, and there are plenty of companies that market them. Why does YHF stand out from other companies?

More importantly, what evidence does the show provide us that the girl recovered because of YHF and not for some other reason? The show can't provide us any evidence to the contrary because it just gives us success stories - we would have to know the failure rate to decide whether YHF really helps anyone. It isn't the fault of YHF that this show doesn't validate their methods, and their methods might be sound. but, I need more evidence before I place any hope in YHF or nutrient therapy.

[Darlene]

Funny you mention that Sue. When I eat high protein and less carbs I feel so much better. I am not saying I don't eat carbs at all. Just don't eat potatoes, pasta, dohnuts, or drink pop. I drink lots of vitamin water, eat protein bars if I am not hungry, put lots of salt on whatever I eat, and try to exercise a little with my recumbent bike. This all helps. And don't smoke. I use to smoke, and quit. Tried smoking the other day and I had major POTS symptoms. I also take a centrum vitamin everyday and calcium.

[Nikki]

This is very encouraging. Thanks for sharing!

[juliegee]

Thank you, Sue, for bringing this to our attention. My son has NMH/VVS and sleeps most of the time. I wish I could "cure"him with diet and supplements I have a few questions and would LOVE anyone's comments. If you are late with florinef, can that REALLY cause a heart attack? WOW- that seemed a bit sensational. My son also takes lexapro. I have read that if that is late (or stopped cold turkey) seizures can result. Regardless, his doctor has told me I MUST wake him up by noon to at least take his meds. Sleeping is NO excuse to throw off the med regimen.

My other question, has anyone ever heard of vasotec, mentioned in this piece. I have found an ACE inhibitor called vasotech given for hypertesion, NOT hypotension. When I googled vasotec/Chinese herb (no matter HOW I spelled it) I found nothing. If it's the ACE inhibitor the piece is referring to, maybe it works like clonodine, the BB. It's also meant for hypertension, but given to NMH folks. It didn't help Mack.

I also feel much better with high protein. I feel awful with simple carbohydrates and good with complex. I think this piece is onto something.

Thanks-

Julie

[Dizzysillyak]

Hi All,

I've been working on healing myself for 4 years now and REALLY wish I'd seen this info on how a high protein, low carb diet can help with CFS with dysautonomia (POTS) sooner. That would have saved me 2 years at least.

Meat and eggs helps because our bodies absorb the protein from meats better than any other source. Regardless of what those vegetarians tell us ... I'd feel horrible if I was a vegetarian ...

Proteins are broken down into aminos which is what our bodies use to produce other aminos, peptides and enzymes. These are the building blocks for our mitochondria, etc. You can look at my essential aminos thread for info on these ..

If you're interested here's my story ... I'm still a work in progress but "progress" is the key ...

http://www.glutenfreeandbeyond.org/forum/viewtopic.php?t=220

I really have to get busy ... hth ... Marcia

[yogini]

I really liked the video up until the point that they got to the florinef. I agree the risk of eart attack from missing a dose of florinef seems exaggerated.