cmruls

Why did you use Rifaximin? What infection were you trying to kill? As for yeast, I take a spoon of coconut oil daily. It is very interesting this oil. Also I avoid aspartame, it will give me an instant headache.

I she looking to just have someone else run the site or is she interested in selling the site? I have lots of friends in this area/business.

How did you take it? 12.5mg every am? or thou out the day? I was weened off klonazepam but I took 10 weeks. I would go back to the prescribing doctor and talk to him about weening off if that is what you really want to do. Show him a plan to start at 10mg and decrease by 1mg each week.

There's no gluten in fruits, vegetables or meats/fish/chicken. It takes some change but is doable.

Both parents and other siblings should be checked. These were a couple articles I searched.

http://www.annals.org/content/127/8_Part_1/621.abstract

http://dataknow.korea.ac.kr/hadextract/hbrowser.php?hla_type=HLA-B&hla_allele=27&disease_treenumber=C23.550.073&geographic_location_treenumber=Z01

I have HLA-B27. I have had episodes of rapid HR and dizziness my whole life. I was told it was anxiety when I was little. At 15 I had appendicitis and it was missed until it burst and I was hospitalized. I was very sick for 2 weeks. Ever since I have been worse. I had episodes of tachycardia and treated with propranolol and later metoprolol. I have been diagnosed with dysautonomia 2 years ago but I know I had it for a long time. My treatment has helped but when I get a 'flair up' I usually get tachycardia, back pain, uveitis. The last 2 weeks I have been low tachy- 110HR and my home monitor shows what looks like a rapid junctional rhythm. With meds it will slow to the 80's and I am in a 1st degree AV block. I also seem to change my rhythm when I lay, sit, stand, yawn, deep breathing, valsalva. I have read that HLA-B27 can cause all these rhythm changes and problems.

Does anyone else have heart rhythm problems who is HLA-B27?

When ever I read a post, I am always looking things up that I don't know. I especially like the signature's that show your diagnosis and treatments. It helps me look for other ideas for me. One drug I haven't heard of is Betaxolol. So I looked it up. This is what I found:

Betaxolol is used alone or with other medications to control high blood pressure. Betaxolol is in a class of medications called beta blockers. It works by relaxing blood vessels and slowing heart rate to improve blood flow and decrease blood pressure.

So if it relaxes blood vessels, this doesn't sound like a good med for us? Has anyone had any experience with this med?

I posted this on another thread, but it seems to be more on topic here.

Interesting that:

Ensure 8oz. has 250calories, 41carbs, 18sugar, 9protein

Milk nonfat/1%/whole 8oz. has 83/102/146calories, 12-13carbs, 12-13sugar, 8protein

Gatorade 20oz. bottle has158calories, 39carbs, 32sugar, 0protein

G2 LowCal 32oz. bottle has 80calories, 20carbs, 20sugar, 0protein

Instead we use:

Almond Breeze Unsweetened 8oz. has 40calories, 2carbs(1 is fiber), 0sugar, 1protein

Coconut Milk Unsweetened 8oz. has 50calories, 1carb, 0sugar, 1protein

Hood Calorie Countdown 8oz. has 45calories, 3carbs, 3sugar, 8protein

My Favorites:

Powerade Zero 32oz. bottle has 0calories, 0carbs, 0sugar, 0protein

Atkins Vanilla Shake 11oz. has 160calories, 2carbs(1 is fiber), 1sugar, 15protein

EAS Protein Powder 1scoop has 130calories, 3carbs(1 is fiber), 1sugar, 23protein

Better to avoid all the carbs and sugar!

We mix the protein powder in the Almond, Coconut, Hood products.

Thank you everyone. The information is there if you use the above and look for it.

Interesting that:

Ensure 8oz. has 250calories, 41carbs, 18sugar, 9protein

Milk nonfat/1%/whole 8oz. has 83/102/146calories, 12-13carbs, 12-13sugar, 8protein

Gatorade 20oz. bottle has158calories, 39carbs, 32sugar, 0protein

G2 LowCal 32oz. bottle has 80calories, 20carbs, 20sugar, 0protein

Instead we use:

Almond Breeze Unsweetened 8oz. has 40calories, 2carbs(1 is fiber), 0sugar, 1protein

Coconut Milk Unsweetened 8oz. has 50calories, 1carb, 0sugar, 1protein

Hood Calorie Countdown 8oz. has 45calories, 3carbs, 3sugar, 8protein

My Favorites:

Powerade Zero 32oz. bottle has 0calories, 0carbs, 0sugar, 0protein

Atkins Vanilla Shake 11oz. has 160calories, 2carbs(1 is fiber), 1sugar, 15protein

EAS Protein Powder 1scoop has 130calories, 3carbs(1 is fiber), 1sugar, 23protein

Better to avoid all the carbs and sugar!

We mix the protein powder in the Almond, Coconut, Hood products.

"The marked orthostatic tachycardia in these patients seemed to be a physiologic compensatory response to a smaller stroke volume that was attributable to cardiac atrophy and hypovolemia. The function of the autonomic nervous system was intact in POTS patients. These results suggest that POTS per se is indeed a consequence of deconditioning..."

This is from Dr. Levine? Not due to ANS dysfunction? So I have this because I sit around. I don't like what he is saying.

I am so sorry and sad for your son. This sounds so terrible. What milk does he drink? whole, 2%, 1% or fat free? Now that you have a dx. hopefully your doctor can work out a treatment plan.

I have been searching and I can't find the exercise protocol. What is it? Please post some information. The most I can find is that it is leg strengthening exercises. Stationary bicycle, recumbent Exercycle, rowing machine, stair master type, Is this correct? What else is involved? Please help.

What antibiotic was he on for this last year?

Use a Netti pot.

I guess that if you subscribe to the theory that dysautonomia is commonly (but not always) due the post-viral or bacterial infection, post-stressful event, long term post exposure to chemicals and foods like sugar, wheat/gluten, corn/HFCS, milk and aspartame, then one can see that these events are on the rise and how dysautonomia is on the rise.

It is like it is retraining the 'loose' venous blood vessels to be more compliant and contract. Kinda retraining them to contract when standing.

So things that will help curb inflammation could possibly help us. Things like turmeric, Nopal cactus/prickley pear cactus, goji berry and cinnamon? And avoiding things that cause inflammation like sugar, gluten, milk, corn, infections and viruses in general. Just thinking.

I agree with

"I can't tolerate any of the ensure-type drinks because they all have high fructose corn syrup. And corn is one of my worst allergens. Any chance it could be something like that?"

What is the sugar g. content of the ensure? How much protein in g.?

Sugar, corn/HFCS, wheat, milk/diary, and aspartame all make me feel ill.

I don't understand the giving of NTG at 8 minutes to speed up the test. He saves 12 minutes? That is soo artificial to give ntg. I would think that a non-pots given ntg sl would drop their pressure and pass out. Ntg does not create a natural physiologic state. Your symptoms and history all sound dysautonomic. I don't know, ntg doesn't make sense to me.

I read somewhere that it takes 7 half-lifes of a drug to get to stable levels and also 7 half-lifes for it to be completely out of your system.

I want off this drug also. I found a pharmacy that will compound it into liquid. They made 0.5 mg in 1 ml. The plan is to decrease the dose by 0.1 ml each week. So it will take about 2 months to taper down and ween off. The problem is that the tablets do not split well and the dosing is very hard to decrease this way.

I'm asking if anyone out there has any experience in exercising in the pool? Even if it is just walking,gently the length of a pool. If you're upright, my thought is the water will provide gentle compression of the lower extremities and help with the pooling of blood in the legs. It will also allow my body to be a little buoyant and 'float'. It should be less stress on my joints and body. But I don't want to pass out in the water.

I don't have celiac but I am gluten intorerent. There is no test for that except a gluten free trial. I feel better off gluten and if I do have a piece of bread my body really tells me.

I really believe that wheat/gluten, corn/corn syrup, sugar, milk and aspertame are all bad. There is plenty of literature to support this. I feel so much better when I don't eat these things.

Thats great.

I use powdered tumeric from the korean store 1 lb for $5. Every day I use 1/2 teaspoon in coffee with 2 splenda packs and 1/2 carton of atkins choc. shake. That cup is not too bad, I then follow it with a cup of coffee with splenda and the other 1/2 of atkins shake.