****onearth

She (Diana Driscoll) said she has spent years treating, diagnosing, and experimenting on herself. Apparently she also wrote a book and has done studies on treating POTS. So while she is an optometrist, it might not be any different than someone like myself, with no medical training, who does tremendous research and knows more than most doctors on this condition. She also (allegedly) cured herself of POTS. I'm highly skeptical, but then again I'm not getting adequate treatment elsewhere. So do I trust these world renown autonomic neurologists who offer me no help? Or do I try another route with something that supposedly cured herself? If you look her up she also gives talks, seminars, etc. so maybe it's legit? I'm also at the point where I realize I'm going to have to figure this out myself since these doctors aren't making any headway. I don't know at this point, and my brain is too fried to make adequate decisions. Maybe I'll wait a while and hopefully insurance will approve something like this.

Thanks. Everything sounded great until they mentioned the price. I too have good insurance. If it is a scam, I'm unsure how people can live with themselves and take advantage of the sick. Personally I'd be afraid of ripping someone off that is at their wits end already, if you know what I mean. I've perused her site and her videos and it seems like she knows what she's talking about, but you never know. I'm also curious as to why it's such a large amount of money. If I ever cured myself of this disaster I would think the good person in me would be helping people for zero-cost trying to help them get back on their feet, and then worry about things like payment later. This reminds me of this mold doctor I once saw, who told me to take out a loan for $15,000 so he could treat me with IV meds and supplements. Does he think I'm an idiot?

Do you mind if I get her name? I'm willing to travel if that's what it takes to find a good doctor. Most out here won't even entertain the idea of biotoxin/mold illness and trying to argue with doctors isn't possible when I'm literally stumbling into the office because I'm so sick/fatigued. I was wondering where the mycotoxins in the urine might be coming from. They are biproducts of mold, so they have to be coming from somewhere. If blood tests are negative from mold then the only other place it would be is in either tissues or digestive tract. Possibly digestive tract, which would make sense since carbs would feed the mold, produce the toxins, etc. Have you had liver panels done? I don't drink, but my liver enzymes are always slightly elevated. Wondering if this is because it has to filter out all the toxic sludge that is/might be produced by whatever is affecting my body (mold?). I also noticed that the higher carbs I eat (especially simple carbs like you've mentioned), the more dehydrated I seem to get. I can go all day without drinking water on a low carb diet, but the minute I start eating white bread, potatoes, etc. then I'm suddenly craving tremendous amounts of water. I've been tested for sugar in my urine (like a diabetic would have) but it has never been positive. I don't know what to make of this. Lastly, I've heard about zeolite too. I was thinking about trying it after a suggestion by one of my doctors, but it came in a spray form and was mixed with colloidal silver. I've read some horror stories about colloidal silver being deposited into skin tissue, permanently affecting the pigment, so I'm afraid to try anything with that in it. Some of these people are actually silver from taking silver supplements. Maybe I'm overreacting but I don't need any more problems at the moment. Glutathione, N-acetyl-cysteine, and curcumin were things that were offered to me in the past, but I'm so supplemented out I'm literally done with all of it. This and the cost has turned me off most self-testing and diagnosis. I think at this point I want a verifiable, scientific, viewpoint rather than continuous guessing-and-checking that leads me nowhere.

I haven't had a TGF beta 1 blood test; that's going to be next for me. Doctor did do basic blood work + culture and no mold showed up in my blood, but I'm wondering now what they actually tested for, how in depth it was, etc. Do you react to food? Higher carb foods make me feel poisoned. I've had stool tests that were negative for fungi I used gdx for this but I'm not sure if this company is credible or not. I've never had a problem eating in my life; always thin, fit, and able to eat whatever I wanted. Now I can't have a piece of bread without feeling like I just drank a gallon of drano. I've also found the supplement "molybdenum" seems to help symptoms. Supposed to bind to the toxins. Who do you see to test for this? A toxicologist? Or is this your POTS doctor? Sorry if you already mentioned it, my brain fog is thick right now.

Thank you!

Say what you want, but my symptoms started in May 2012, which was during the 1 month we had tremendous mold growing all over our apartment. My roommate moved the dryer and the venting hose dislodged, causing steam to go all over our apartment without anybody knowing. Mold suddenly, seemingly, sprung up overnight. I have never been the same. I was the picture of health, and now I can barely get out of bed. Whether or not mold caused this, I don't know, but the timing is pretty **** confirmative in my opinion. I've had urine testing by RealTimeLabs and tested positive for both tricothecenes and ochratoxin. There are studies out there relating chronic fatigue with mold exposure, with the control group (non-exposed) showing absolute zero levels of mycotoxins in urine and those exposed and with symptoms with positive results. I don't know if this test means anything or not, but it's more information to add to the pile.

I think They said it's $6,000 for the week to go deep into investigative mode and look for answers to the cause of my POTS. This seems almost too good to be true. Does anyone have any experience with Dr. Diane Driscoll and the POTS center in Austin, TX?

Also, I have been looking into treatment with ibogaine. It's supposed to be this psychedelic alkaloid derived from iboga root bark that helps people with mental illness, addiction, physicla trauma recover completely from their problems. People say it 'resets the brain'. I am not really afraid to do anything at this point, just wondering if this will **** me up more and make problems worse, or if something like this as a last resort could potentially cure me. Has anyone heard of iboga, or any other psychedelics helping cure problems such as ours? Would ayahuasca potentially help? These are shamanistic rituals used the world over, so regardless if it's illegal in the US I could really care less. I need answers, and I need them now.

Thanks for the replies. I'm trying to put the paperwork together now to get into Vanderbilt clinic, as well as calling their research department for in-patient testing. Maybe I can be a test candidate for the vagal nerve pacemaker. I'll do the search on the form for sex symptoms, thank you. lewis: I've had CT scans and MRIs of both my abdomen, pelvis, and head + neck. Would this show up on these scans? Everyone tells me how healthy I am, but looks can be deceiving. I looked at pictures of the celiac artery and I definitely feel symptoms in that location. I've had a hard time eating for years and none of the treatments help. I eventually get frustrated, quit, and stop following up with doctors. My mind is in the gutter. One of the things I still have not yet had addressed is this physical problem in my insides. I feel something is physically off, yet scans show no tumors or anything foreign. I feel like I have trouble breathing all the time, which doctors say can be due to the disorder, but I wonder if the autonomic test was faulty because I was having trouble breathing during the test, and during standing. I know my body, I was in the Army, I know how to exercise hard and what "being out of breath" feels like. This isn't it. This feels like something is physically pushing on my insides, and I have developed back and neck problems because of it (feels like my entire midsection equilibrium is off). Could this autonomic dysfunction be caused by physical pressure on the vagas nerve, from perhaps a muscle, ligament, broken rib, or something such as this? Can the vagus nerve be activated or inhibited by physical contact with other parts of the body? Buspar to relax my upper stomach isn't working, and I think the reason my stomach isn't contracting properly is because of this physical problem (trouble swallowing, breathing, at my solar plexus)? I've had pressure, tightness, and inability to swallow properly for years, at my solar plexus area. Doctors ignore this. I don't know what to do. I feel if I can reset my body physically I can reset my autonomic system since I can relax. I feel as if I can't calm down because I can't breathe right all the time, so perhaps I'm stuck in sympathetic overdrive much like someone who is trying to come up for air in the swimming pool after holding their breath? Would they test abnormal on an autonomic test if they took it right after coming up for air? Thanks.

I was treated at Stanford by Doctor Jaradeh. He said my vagus nerve is operating at 50%. This is causing my stomach to not relax (proximal stomach) which is causing dumping syndrome. The dumping syndrome is releasing food too fast into my duodenum, which increases GLP-1, and causes an insulin surge. This insulin surge causes reactive hypoglycemia. I am not diabetic, but my sugars have reached as low as 38. Many tests were ran, even tested for MCAS, but nothing was found. However, white cell count was low and liver enzymes were slightly elevated, which is usual on my blood tests. Also, Chromogranin A was slightly elevated, but as I understand gastritis can cause elevations of this test (and I've had ongoing gastritis for years). I am currently on 0.1mg Florinef, 15mg Buspar 3x daily (for dumping), and 25mg Acarbose every time I eat a carb for Reactive Hypoglycemia. DRUGS ARE NOT HELPING. My question is this: what can I do to make the vagus nerve operate normally again? What could potentially be causing this decline in vagal activity? He said my vagus nerve was "sluggish". My blood pressure drops 30 points on standing, but quickly corrects itself via increase in heart rate (30-40 beat increase) within minutes. Is it possible an amphetamine overdose fried my vagus nerve? Is it possible I was using amphetamines for chronic fatigue in the first place because dysautonomia was already there, and now I've just become hypersensitive to stimulants? I need a doctor to look deep into my cause but cannot find one who will really look. Dr. Jaradeh was awesome but I can only see him once or twice a year. I'm currently looking into autoimmune problems, but perhaps these tests were already done. I'm in such bad brain fog I can't think straight enough to put together a plan of attack, and my family has abandoned me. Last note: food screws with my system. If I fast, I am generally ok. I feel poisoned after eating. Is leaky gut/intestinal permeability real? Or is it another scam? I do not have food allergies. Also, I cannot have sex or masturbate. It sets off all of my symptoms. Hormones check out fine, doctors cannot figure out what to do or what causes it, and most don't take me seriously. Why would ejaculating cause all of my symptoms? Am I depleted of something? Thanks! Tyler

If I have hyperadrenergic pots and I take an Adderall (because I'm so fatigued I can barely move), I'm concerned about the increase of my blood pressure and heart rate. How long and hard can heart rate and blood pressure be elevated before death occurs? Does it take years of elevation to kill, or can I cause immediate death by a one time substantial increase? If I have any chance of actually getting appointments somewhere I have to be on some meds, but no one to manage them. Does anyone have any experience with Adderall?

Thank you!! I will get right on that.

Sorry everyone for not posting for quite some time. I crashed hard. I'm homeless now, and it's not as bad as you'd think. The only problem is I can't cook healthy meals and I'm sure this fast food isn't going to make me any better. The fatigue and brain fog is the worst. I could live in a cardboard box so long as my health improved. Sugar destroys me as well. I don't know if it's because of the insulin response, or the stimulation sugar provides, but I can't tolerate any carbs at all anymore. I think the comment on the body trying to eliminate the sugar and lowering our already lowered blood volume is spot on. So I'm trying to figure out what to do. When I made appointments for the doctors you all have listed above, the wait times are long. I'm on cancellation lists but I need answers now. The other problem is that I routinely miss appointments when they do come up, because I'm often too tired drive, function, even call a cab, etc. What I try to do now is fast and not have anything to eat the entire day of the appointment, to make sure I have the best chance of making it. I honestly can't believe I ever believed in God. This whole "hope and pray thing" is ridiculous when you're faced with reality. I just wish other people would wake up, and maybe we'd have more doctors and families trying to help us rather than shunning us for "deserving it" even though we did nothing to deserve this. Wish you all the best of luck. If I ever pull out of this I will dedicate my life to trying to come up with a cure for dysautonomia, so the rest of you don't have to continue going through this ****. Tyler

Thank you all for your help. I will look into all of this in the next few days, brain fog is very strong right now. Last Question: Does food affect anyone? If I don't eat anything I seem to be okay, but when I eat something my symptoms spiral out of control. I can never tell what triggers it, and have had all sorts of tests for allergies and the like. I have been looking into things like 'leaky gut' and other digestive disorders that could potentially cause my dysautonomia. In fact, in the beginning I was telling my parents and doctors that I was having insane reactions to food, but it fell on deaf ears. Typical gastro workup shows nothing. I almost feel poisoned after I eat. Celiac is also negative. Could food be causing my problem or is that just a side effect of a shift in blood flow? I swear to god sugar makes me so, so sick, but the heavy things I'm supposed to avoid (meats) are the only thing I can really eat. I almost feel like none of the drugs have worked because food has been the culprit the entire time. SIBO was negative, as was all sorts of tests for pathogenic infections. Tyler

Thank you all for your kind words. By chance, do any of you know any good doctors that have helped you in Illinois? Or even the midwest? A good doctor is hard to find. I'm so worried that I might end up in jail and then not receive any treatment at all. I go into these fits of rage that are hard to control. I hate being the victim, and most doctors will not take my health (or time) seriously. I am not the kind of person that lets someone walk over me, so when a doctor tells me off I nearly lose it. This gets aggravating after having waited patiently for months for a new appointment, to only get pushed around yet again. I've gotten to the point now where I don't even try to get help anymore because I can just assume that if I make an appointment for, let's say, September (my next appointment in California) it will, yet again, be a complete waste of time. It's like I've lost all motivation, even though I want it so badly. I just don't have the energy to go forward, which beings me to my next point: I have three questions if you all could be so kind: 1. Has amphetamines/stimulants helped any of you? I was on them for a bit and they really helped me with motivation and energy, but now seem to have a paradoxical reaction to it (they don't work, sedate me, or send me into a hyperadrenergic crisis). 2. Do you know what is causing your pots and how to get tested for its cause besides the regular autonomic testing? 3. How can a doctor give me sodium for increasing blood volume if he/she doesn't know I'm hypovolemic to begin with? There's got to be a test for this. I've had periods of hypertension due to increased sodium intake, so I'm afraid to pretty much listen to anyone other than fellow patients, because doctors really have no clue. Right now I'm med free and feeling very scared, and I'm not one to be scared at all. Thanks again, Tyler

Disabled vet, spent nearly 3 years in bed. All of my family and friends abandoned me in my time of need. Money is running out and I have no help. I have been to Stanford University (where I was finally diagnosed after years of people telling me it was all in my head), Mayo Clinic, and seen nearly 50 doctors of all specialities to help treat my problems. Nothing seems to be working. My family refuses to believe there is a problem. Apparently I am not "praying" enough to make my problems go away. These are the people that gave birth to me. I feel like I have no one on my side and no one to talk to who even tries to understand. I am bed ridden most of the time. I am at wits end. Drugs seem to make me worse or have no effect at all. I do not know what is going on with my body. All I want is to be independent again and able to work, go to school, have relationships, and get on with life. What's worse is that my ex-family thinks they did everything they could, when they flat out told me if I kept being sick they were going to admit me to a psych hospital for 'depression'. Give me a break. Tyler