GypsySoulNicole

Okay Issie, I'm finally chiming in! Let me start by stating, I am by no means on the same level playing field as Rama, Issie and most of the rediculously intelligent people who post on this forum! I do feel, however that I have gained a fast forward imaginary medical degree just by googling every 4th or 5th word ya'll post! I am at a place with my dysautonomia, pots, eds, mast cell and whatever the heck else labels they have given me where I am to wiped out to debate how this disease is ripping my body apart. I don't even care anymore. I just want to get better. I am even willing to take any placebo pill, juice what have you as long as it works. I did not get to go to my Vanderbilt appointment in November after being dropped by my insurance company back in July. I was so upset, but if I wouldn't have lost insurance I would have never started exploring "alternative" ideas. With all that being said, I finally came to a place where I was ready to listen to some of the suggestions I blew off early on because I was so focused on doing what my cardiologist and neuro were willing to try from the latest research. Last week I had an appointment with an Amish doctor in a rural office here in Indiana. Our pastor had urged me to go after he had been diagnosed as terminally ill at different hospitals, he recovered in about 2 weeks after going to this Amish Doctor. (No, I don't know what they said he had what he actually had etc). I figured I have nothing to lose, so I booked an appointment. The appointment started out with a live blood analysis with darkfield microscopy. Now, I have since googled this and of course, it is controversial because it is not fda approved and most stuff online says the "dr's" doing this are selling snake oil etc. (I'll get to that part later). I remind you, I am just an average farm girl, but I don't understand why looking at live blood is not approved? My common since tells me that's crazy because when my blood is in my body it is alive, makes since to look at what it's doing in that state. Anyway, the microscope had a tv hooked up to it so we could see the blood cells and what was going on. The humble Amish man explained all the stuff on the screen (red blood cells, white blood cells, sugars, etc.). Now, this was my first look at blood under a microscope, (I try to avoid seeing blood in any state so I don't pass out) so I was a little skeptical thinking "Is this what everyone's blood looks like" until it was my husbands turn and his cells were so different, like, helathy different. With my no medical degree mind I could see clear as day my red blood cells were not round, they did not have a pretty outline and there were these stringy worm like things twirling around. My white blood cell count was almost non existent. Some of my red blood cells looked like swiss cheese. I asked what those dots or holes were and he explained that the wormy things were the spirochetes (the borrelia burgdorferi spirochete causes lymes) and that spirochetes "bored" holes through cells, connective tissue etc. I had the heeby jeebies watching these little dudes (now referred to as my "bugs") wiggle in and around that drop of blood we were viewing when I started to think of the magnitude these things could be doing everywhere I had blood! The Doc made notes while he was observing the blood and he quoted research/researchers and write stuff down for me to look into on my own. He brought up Dr. Fry and FL1953 and I about fell out of the chair. I had read Issie's first post on this topic the night before my appointment but didn't think much of it until he brought it up and the "bugs" were staring me down. He explained that just like the flu virus changes so do the spirochetes of Lymes, and co infections like babesia and that they could affect people differently. Evidentally, Dysautonomia is a symptom of late stage lyme. Again, controversial, I know. But I suppose now I am ready to hear it since I have seen the damage with my own eyes. Without knowing anything but our first and last names he pinpointed symptoms when looking at our blood. My husbands cells looked totally different than mine and somehow the Amish man knew to ask if my husband had seizures. We were shocked because my husband is healthy except for epilepsy he acquired in adulthood causing grand mal seizures. Now, for the money part. It was free. They do have a store attached to the office where they carry all sorts of natural products including, there own herbal concoctions, however, he wrote down what he recommended and told me I could research everything he gave me and I could find the products online, at a natural store or I could order from there catalog if I didn't want to drive all the way back. (They do not have a website since they are Amish.) I highly recommend watching the documentary "Under Our Skin", it is available on Netflix instant and some other outlets for free. It does a great job of explaining why there is so much controversy. It also shows pictures in between clips of the spirochetes under microscope including darkfield like I saw them. There is so much controversy on how lymes is spread, I didn't even know about. I think that if I would have just had a positive western blot test I may be more skeptical but seeing them live in front of my eyes let me know they are there and I don't care how they got there. Right now, it does not matter if it was a tick, mosquito, blood transfusion or a lyme fairy over my house. I am not concerned that I never had a Bulls eye rash. I don't know if I was more susceptible to "bugs" because I have EDS or if the "bugs" bored holes through my connective tissue and caused some sort of a DNA change. I, like issie, have had symptoms of dysautonomia since I was little but have taken a beaten in the past year or two. For the first time, I have been reading about Lymes and it's coinfections and it has connected the dots on how I am affected more on one side of my body, how one eye droops and my hand locks up and raynaud's takes over. My truth is, I'm sick, I want to get better, I am tired of waiting for the latest research on one of my symptoms that might offer a new and improved medication to mask that symptom. I want fixed. I don't want a bandaid over a splinter, I want the darn thing pulled out. I don't know when diet and natural remedies became controversial, I suppose it was around the same time in medical research that the wolf started guarding the sheep pin and big pharma started funding research. I know that Mama always said you are what you eat, though. I'm willing to give this a try, for those who want to know what was recommended, what I'm doing with it and how it all works out, pm me. Rama, Issie and all of you who post on this forum, don't stop! Your ideas, your searching, your debating is what keeps so many hopeful! I am grateful to be included in a diagnosis group with people who have so much fight in them they are constantly thinking, learning and posting. If it wasn't for you I would have stopped at the cardiologist's "You have Dysautonomia, there's not a lot we can do for you."

When I shared my POTS/Dysautonomia story I was knew to this forum and had just got my dx. I am so grateful for this forum and the amazingly smart, possibly genius people that post on here! Because of all of you, I am connecting dots that I never thought fit together. My 10 year old daughter has had health problems for quite a long time. She has had chronic GI and ear issues. She had tubes put in her ears after breaking her ear drum at the age of 2. When the tube was put in the ear continued to seep an enormous amount of fluid/debris and she had to have another surgery to remove the debris and tube. The ear never stopped seeping. We have been sent to Riley's Children's Hospital in Indianapolis only to have them confused as well. Last year, they thought they saw a cholosteatoma in her CT scans. They did another surgery and removed her ear drum only to find there was no cholosteatoma, just a lot of fluid and debris they cleaned out. She has had chronic swimmers ear infections for several years. She was not getting the ear wet, we even switched her to dry shampoo and I supervised all of her activities making sure it wasn't getting fluid in it. Still, the swimmers ear continued and then she developed open sores in her ear canal. While all of this was going on she had terrible constipation from the time she was born. They had her on miralax and questioned her diet, and what I was feeding her. Then, her dentist had to do a dental surgery to fix cavities and said they were strange, almost like they decayed from the bottom up. With all of this going on she started to gain weight and complain of joint pain. Going to the store became so hard on her she would be limping by the time we got through the parking lot to the doors. Most doctors wrote all of this off as me probably feeding her junk and a lot of it, making her inactive, overweight and constipated. We live in a rural area and grow a lot of our food. We eat pretty clean. I couldn't understand it. I kept blowing my POTS symptoms off trying to help my daughter out and last year at a loss I prayed that I could help her and start finding answers. That there had to be something big the doctors were missing. That is when I started to get really sick. My dysautonomia was progressing faster and I had to turn my attention to start fixing me. I think it was an answer to my prayers! If I hadn't started getting bad enough to seek help I would have never found Dinet. After reading your stories and looking at your dx's, by process of elimination I started narrowing it down. I believe we have EDS and mast cell issues. Last month at her ENT appt. the ENT was still baffled by her ear (which has lost 40% hearing and still has sores and fluid) and then he looked at her finger joints. Instead of being swollen at the joints like most people with arthritis symptoms her joints are sunken in. They look strange. She started popping her fingers at all the joints to show him her tricks. She has had this rash on her arms for years, doctors told me it was mosquito bites with scars or something she kept opening up. But, the rash seems worse in winter when we have no mosquitos. I discussed my issues with him and that I had a gut feeling the underlying issue was EDS and Mast cell. He didn't think it made since because we don't look like EDS people. (What the heck to EDS people look like!?!?) But, he took it as a bet and decided to refer her to a geneticist. On a whim, my PCP referred me and tomorrow, my daughter and I both have our 1st appt. I am so excited to possibly get some answers to atleast point us in the right direction and I would have never pushed so hard if I had not found this forum! Thank you SO MUCH for sharing your stories!

Her theory is for the cause of POTS in those with EDS, so the theory doesn't fit everyone.

This has to be a mistake. I downloaded both driscoll theory 1 & 2 for my kindle fire for 99cents each. I found her theory interesting although I have not tried her reccomendations.

Welcome Tritessa! It is so great to know there are others out there just like us! I am newly dx with dysautonomia (although I've had symptoms for 26 years) & trying to wrap my fogged up brain around all the info! I was also dx with IC 2 years ago and even tried the rescue therapy with catheters twice a week for relief. A strange thing happened to me unexpectedly, after having I injections in my back at l3 l4 and l5 last winter the bladder pain and pressure I experienced since childhood just disappeared. Not sure if it is a good thing or bad, but I'll take the relief! I have also been having mast cell like symptoms becoming more severe with the last potsy couple of months. I hope you find guidance and community here, I know it is such a relief to log in at night, for me and see I am not alone

I take 20 Mg adderall a day. I have been on it for a few years. The original diagnosis was adhd- but now I think the adhd symptoms were pots related, like fidgeting in the office, moving feet around a sitting *** knees up etc. It helps me "get going" in the am with an energy push I need. It has also helped with low bp's and anxiety. At first I felt weird and jittery but after sticking with it a week or so that feeling went away. The extended release worked better but the reg. adderall is cheaper if you don't have good insurance.

Saw this on the news & thought I would post it. Just something to think about when we need antibiotics. http://www.nydailynews.com/life-style/health/antibiotic-linked-rare-deadly-heart-risk-exchange-zithromax-azithromycin-doctors-article-1.1080016

I recorded an SVT with my event monitor while I was relaxing and pinning up my hair. My heartrate was around 330 and it lasted about 15 minutes. The very next day while in the doctor office discussing my tachycardia I stated that I felt "weird" just suddenly felt exhausted, was staring off, not blinking and not very responsive. The nurse ran and got a monitor on me and my HR was at 30bpm. She had me lay down and we could not get it up. She noticed that it appeared I was holding my breath (must have been involuntary) and after that they gave me oxygen. The oxygen finally got my HR up to 60. I felt a little better and we continued the appt with the monitor on and out of no where my heart climbed from 60 to 100 within 30 seconds. Stayed around there the rest of the day. That is when the cardiologist said I was beyond his treatment and needed to be referred elsewhere. Because of the severe Bradys I am afraid to take the Beta blockers he suggested prescribing because of the lowering affect. I know I have read that they even out HR's but since my HR gets so low sometimes I don't want to chance it on a dr. who admits I am out of his medical league. Anyone else have experience with Beta Blockers while having low bradys?

I carried 3 daughters while living with undiagnosed POTS. With my 1st pregnancy I threw up every meal every day for 9 months. I delivered her vaginally, full term at 7lb 8oz. The next 2 pregnancies wreaked havoc on my body. The little girls are 12 months apart. The were both born premature, taken to the NICU on ventillators but were at a good weight for preemies, (5lb 11oz. each). I fainted a lot during pregnancy but everyone wrote it off to pregnancy hormones. I broke my pelvis after passing out at a checkout line at Walmart while I was 5 months along with the last daughter. She was taken early by emergency C-section after not moving for an hour during an ultra sound. Turns out she couldn't because my pelvis was broken. (This took Dr.'s 4 years after she was bron to figure out~another story!) Even though my pregnancies sound horrific, you have something that would have changed it all for me and that's a diagnosis! Find a good OBGYN, sometimes it's not the Dr. with the fancy degree but the guy or girl who has compassion and is willing to learn with you that makes all the difference. I can tell you with 100% honesty, I would do it all over again, even if I knew what was going to happen. I would gladly take gestational diabetes and vomitting for my Naomi! I would sign a waiver and accept the INSANE amount of stretch marks, exhaustian and tachy for my little Eden! And my dear little Ayda Grace, I would take a broken pelvis and some C-Diff again for her in a heart beat!!

Wow...only 4 I didn't have. I had my MRI with and without contrast today, as ordered from the opthamologist. I hope they can find something out!

sarahm. I am just west of Ft. Wayne. Where did you grow up?

Thank you for the kind welcome jpjd & Issie! @ Monstrosity I'm not sure what doctor I'll be seeing yet. I should hear something later this week. Today I had an opthamologist appointment to address temporarilylosing vision in my right eye off and on the past couple weeks. I have a mri with and without contrast scheduled for Monday.

I have this as well! I went to the eye dr. last year and while she was going through the frames asking which was better, I was making sounds like "whoa" and "ahhh". I explained to her that slide 1 was not as fuzzy as 2 but they are both so 3-d I could throw up! She said she'd never had someone say that. When my symptoms are worse I drive more cautiously. I seem to think that objects like stop signs are way closer than they are. I freak everyone out gasping at objects that seem 3d and like they're coming right at me. We live in a rural area and a deer running through the headlights will mess me up for days! I cannot stand to ride with other people because I feel like I have no control over the objects coming at me! Sunglasses make it worse, but I have found a specific style that is okay for me. Ones with a flat front. Any curved sunglasses that "wrap" like oakleys are not even an option. It seems like it is worse in certain vehicles (maybe the windshield curve) and at night.

Hello All! I've been "living on" this forum every night for the past few months and thought I would finally chime in and introduce myself. I am a 32 year old mother of 3 from Indiana. I believe I have had POTS and other weird stuff since I was young. At the age of 6 I was struck by 2 cars and suffered traumatic injuries. I remember POTS like symptoms appearing soon after I was out of the body cast and wheel chair and able to walk again. I had an echocardiagram at around age 8 after complaining of a strange feeling near my heart. Nothing was seen and so the issue was dropped. I started passing out not to much longer after that. We all just assumed I was weak, hadn't ate enough, etc. I wore a heart monitor for a week while I was in highschool after passing out and having the sensation of everything turning black and palpitations. yet again, nothing was found and I was reassured that I was experiencing sugar lows because I probably hadn't ate enough. From then on, I associated palpitations and POTS symptoms with sugar lows. Syncope has just been a part of my life. I have always been treated for the results of the syncope and no one ever questioned why the heck I was passing out. I have broken my jaw, busted my face and needed stitches, hit my head numerous times and even broke my pelvis in 2 spots from passing out in the checkout line at Walmart while I was pregnant with our 3rd daughter! I would instruct people to get me a candy bar cause I was having a sugar low! LOL! About a year and a half ago I had to switch PCP's do to an insurance change. I was nervous to meet my new dr. but something miraculous happend to me that day. I met with the Nurse pract. first and as she took my vitals and noticed my purple feet she decided she would get the doctor and have her meet me. She walked in the room, shook my hand, looked at my feet and started giggling. She said, You have dysautonomia. She had just watched the episode on Medical Mysteries and found it fascinating and researched it. She directed me to Dinet.org but also said there was not a treatment for me so I had to live with it. I was just excited to find out there were other people like me out there! Something changed a few months ago though. I developed a bunch of new symptoms including Raynauds, breathlessness, severe brain fog etc. So, I was ordered a lupus panel & a trip to the cardiologist. The Cardi. gave me the event monitor and scheduled the TTT. I had a positive TTT after passing out at 2 minutes upright. My HR was stuck at 30 for about 15 minutes after they reclined me back down and finally came back up after some oxygen. My event monitor recorded several severe SVT's and Brady's. My neuro stuff was not good either. I seem to be having the opposite of the "norm" for doctors and POTS. My doctors, although they don't seem to know much about Pots/dysautonomia, seem very concerned that things have been going down hill so fast. They referred me to Vanderbilt and after receiving the paperwork last week and an appt. set for November the Neuro called me back and said that it wasn't acceptable and he didn't think I could wait that long. They have started the referral process to Cleveland Clinic today. I am so grateful for this forum and all the info it provides, but most importantly the feeling of connection. That I am not alone, there are others out there just like me! Thank you so much for all of you sharing your stories for others!