MikeO

Well i have been put on XIFAXAN for suspected SIBO issues. it is a two week course of antibiotics. as i dug into the intestinal bacterial overload seems to be common with a number of folks from diabetes to ans issues like POTS and vagus nerve issues.

Hate the NIH studies that just suggest that more studies are needed. i am just happy i have a gastro gal that is working out of the box.

I hope the treatment helps.     

Well new email from STAT. My take is they are pushing for funding just can't capture the whole email thread. My Doc says does have reservations for good reasons.

I am sitting off to the side for now as nothing has been proven, cost for a wellness device is high and how does the product help me? i could see a preemptive alert that i am about to pass out but i doubt this is in the works (FDA stuff). I already know that if i drinks fluids and watch what i eat i do better. some folks are think this will show or cure there issues i am refraining from this. Just my 2 cents.

Here STAT's response to the device being available in other countries.

Update my test was concluded in two hours. normal GI emptying. so gastro is going to treat for SIBO and see what we get.

17 hours ago, albertspa said:

@MikeO

Here's an update on whether you would be able to use it outside of the US, even if you were to have it shipped through a third party. It's kind of a vague response.

The service requires a active internet connection as the app's core computing is done in the cloud so service can be a issue no matter where one lives.

I also get a feeling that one's data might be or end up being shared with other interested players. keep in mind these folks and the investors are doing this for money and not just out of the kindness of their hearts.

4 hours ago, albertspa said:

@MikeO@Sarah Tee Thanks for the answers guys! So I asked STAT Health directly via facebook and this was their response. Seems like you were right, Sarah, it appears they didn't yet get the regulatory approval to operate from outside the United States in regard to personal data collection and the like.

This somewhat implies that you may be able to use it from outside the United States, so I bet you could have a relative or friend purchase and send you one.

Wow the question was posted on the VIP STAT facebook and went unanswered. "Can you give me an idea of when this will be available in Australia? I have severe POTS it would help so much."

1 hour ago, albertspa said:

Is there a reason why this isn't available for purchase from overseas?

Yes the product has not been fully developed as of yet and the company is in a crowdfunding mode (campaign to raise money). I bowed out of the early pre-order. i do hope the product does make it to market but i am just not waiting for it to get there. Just as a side note if or when it is available it will just be a health wellness device and still i can't see paying a substantial cost for that. A DME like a CGM i could see but they are not close to that.

Well more to the story insurance did buck up and are paying for the Libre CGM sensors they are also are paying for the 4 finger sticks that are required a day for me. i would like to still have the Dexcom G7 but for now will take what i can get. 

3 hours ago, Sarah Tee said:

when/how do you see the referral letters? I am trying to work out how to intercept them in future.

I can't see the referral letters on MyChart. i could pull records but is a bit of a pain. i just ask when i go in for the referral or have to call on one that went crickets. i.e...being referred for dysautonomia to a provider that does not have a dysautonomia clinic 

Happens to me from time to time. usually it's a nurse that gets the referral information wrong or mychart has not been updated to reflect the issue i am being referred for.

I just message my GP with what is going on and hope for the best. I have more issues with referrals being sent to out of house providers.  

1 hour ago, Jyoti said:

 I keep thinking I should use mine for important doctor's appointments and the like as well.

Darn brain fog Haha. I just may give this a try. Thanks for the feedback.

1 hour ago, Jyoti said:

Me too!  I use it primarily for enhancing my sleep, but it also helps me a lot when I have done too much and my nervous system is in crisis.  The refund is full (less shipping) for 30 days, so the risk isn't too high. 

i may just look into this. sleep for me is a issue for sure.

Interesting articles. Had the preload talk with my Cardio Doc. He does get that the postural drop in blood pressure causes Shortness of breath or laboured breathing "no blood for your heart to pump due to pooling" thus affecting preload (pumping a dry heart sac). Also touched on why i don't like the tachycardia episodes that i would get while hardly moving causing me to be short of breath and lightheaded "lack of filling time for the heart"

Not sure how much my Ranolazine helps with any of this for me but it does improve diastolic function (diastolic stretch) and favors the pns function of the heart and have seen improvements.

Well i wish there were new treatments for some of this as they have not changed much over the years and seem to be blanketly indicated for a number dysautonomic issues. 

21 minutes ago, RecipeForDisaster said:

I have a nice QR code medical tag that leads to a website where I can customize the content.

This is a great idea! i need a tag but just too much to put on one. I will look into it.

A Instant Pot. Love this thing. A custom Dysautonomia printed carry case might be worth it. 

10 hours ago, RecipeForDisaster said:

My gastric motility study was upright, though. It was only a minute per scan.

so what did you do for the other 59 minutes in between scans? could you leave the lab area? 

On 10/27/2023 at 7:50 AM, Sarah Tee said:

I finally managed to get back to some exercise today. I’m afraid it felt rather joyless but I gritted my teeth and got it done.

I am relieved that after my little “adventure” the other week (adverse reaction to verapamil), my BP behaved itself during and after exercise.

Happy to hear you are making progress....keep up the good work

On 10/26/2023 at 6:44 PM, RecipeForDisaster said:

rough without coffee

Haha feel this coming on

23 hours ago, Pistol said:

Waaaaaay easier than a TTT!

Thanks! Sure i don't see anymore TTT's in my future. Three was enough.

Bit nervous as i heard it takes 4-5 hours. scheduling asked a ton of questions like if i had a pick or port, special needs and if i was a diabetic (sigh) they also said they will make me eat before the test. I just hope i do not throw up. They mentioned something like bread, egg and i forgot what else. Darn brain fog.

Just reaching out if anyone has had one seeing a lot of us have gastro issues. 

1 minute ago, Sarah Tee said:

Does it beep at you when your blood sugar is getting too high or low?

yes it will alert you. also has some custom alert one can set as well.

Love my instant Pot. Cooked all three items on the plate in the pressure cooker.

Bit more info for inquiry minds. I can see the insulin is taking the edge off my meals. will see if the endo wants to do a insulin to carb ratio change.

10 hours ago, Sarah Tee said:

I’m going to see my autonomic specialist tomorrow. I have realised that it is probably beyond him to organise for me to have a transcranial Doppler ultrasound (TCD). It is available in a hospital in the capital city near me, but no-one uses it for autonomic testing yet, and I don’t think my specialist is up to the task of getting them to do it.

So what kind of “normal” specialist would investigate cerebral blood flow?

(By the way, my blood flow seems to be reduced even when I’m lying down, judging by my symptoms. It seems to be more to do with time of day than horizontal/vertical, although I do of course feel worse if I stand in a queue or something like that. So I don’t necessarily need it measured during a TTT.)

I would think that a neurosurgeon could look at this but don't quote me. i also get a feeling one would need some sort of pre-diagnosis to be seen.

Thanks to a nurse friend of mine she gave me 3 sales samples they get from the Dexcom reps. so good for 30 days as we try to get insurance to pay for a more permanent arrangement (on insulin)

First full day of monitoring. lows on the 18th were not real but the quick drop on the 19th was and i did start sweating. i know it because i woke up and went to the bathroom.

1 hour ago, Macho319 said:

Anyhow they put me on Fludrocortisone

Had a talk with my Doc on this one. Not saying who this helps but he did say this one was reserved more for the low BP folks in their 90's in his opinion. i know it is not for me as i have had a 4 cabg bypass. the drug will raise your bp for sure that's why it works from what i read into it. seen a number of folks that have a go on the med.