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Everything posted by LarlaB

  1. For VNS, is a lightweight ear clip attached to a small TENS unit....unless you buy his clip that attaches to draws current from a cellphone. I believe full dose is 2 hours of VNS a day- can be worn will doing other things.
  2. I'm on this protocol right now for Autonomic Nervous System repair after my concussion and subsequent POTS. I strongly suggest finding the Nemechek Facebook groups.... you can read lots of stories, get input and ask questions. There is group for caregivers and also for patients- if that makes sense. They are kind of militant about how they manage the groups, but there are 10K plus members. So it all builds off of the Inulin or Rifaximin first.....then adding oil and VNS. I think some people give it a 2 week headstart- I don't remember what he recommended in the book, but it makes logical sense to me. The oils cannot do their best work if the gut is simply overrun and hugely imbalanced. That could be why you haven't seen much difference from just using fish oil. I have been taking inulin, good quality COOC olive oil, nordic fish oil. I tried the vagus nerve stimulator (VNS) but it was too much for me and provoked dizziness. I couldn't feel it becuase the settings are so low, but in 3 minutes I was full on dizzy and nauseous. That is not a normal reaction and likely due to the complex crap going on for me- including some upper cervical spine issues, essentially whiplash neck muscles and also post concussion issues. From what I've gathered, the VNS is a crucial part. I have a TENS unit and just got an ear clip piece....very low settings. I may add it back at a later time. He did just come out with his own VNS clip that attaches to your phone- for like $800 (his brother runs the manufacturing company). That really turned my stomach. He also does link to re-selling the supplements he recommends and is now working on his own olive oil. All of that together hits me the wrong way. He is definitely proprietary and trademarked to the limits. And I did get his book and was not impressed - not a lot of science or studies or data to back up his claims. But I have heard enough about SIBO from various sources to absolutely believe his premise might have merit, and that is enough for me.
  3. It’s not unfair to be upset. Everyone is entitled to opinions. Maybe if OP, who asked for input, got upset? Sure. But everyone answered knowing this is a large community and not just OP would reply. Ducking behind “But she asked and we are simply answering her question“ (innocent eyes- blink blink) doesn’t fly with me as a defense of sharing broad generalizations.
  4. Yet several people who do not have “raw emotions” have said similar things almost immediately at the start of this thread. it’s not sensitivity, thin skins or inability to consider criticism... to some of us it’s rude, hurtful and unexpected that such large generalizations are not only tolerated but encouraged. It’s not constructive and to protest “OP asked a question and we simply answered” as rationale, troubles me. The premise and tone is not constructive. I’m certain OP was on some levels sincere but it’s a poor premise that invites broad generalization and many answers did just that. At the end of the day it’s opinions and everybody has one. While that might make me come off as “a wee bit of an arrogant American” I don’t believe I am wrong in what I am observing. At core it’s shortsighted, borders on unkind and unprofitable in a community context and pains me that these even needs to be called out as such.
  5. Do the hives go away or lessen at all when she was taking antihistamines? If your DD can’t tolerate antihistamines, even a Benadryl at night will help lower the load and keep the allergy bucket from cascading. A small thing- but with histamine/allergies, it’s about realizing all the small things fees into the bigger picture. At least I’m learning that. Look into MCAS if you haven’t already- mast cell inhibitors and mediators and liberators. Pretty interesting stuff. https://mastcell360.com/debunking-mast-cell-myths/ That blog is amazing. Like a deep dive into MCAS from a slightly more wholistic approach It doesn’t all have to be OTC antihistamines...Holy Basil, Quercitin,NasalCrom, Vitamin C can work in various ways to help. I’m not sure what you’re looking for recipe wise... you seem to have a good idea of what to do or avoid. We can’t help with resistant family members LOL one small change at a time
  6. I have Celiac and recently DXd with MCAS (mast Cell activation Syndrome). MCAS requires a low histamine diet as part of treatment. It is MUCH easier to do a GF diet than low histamine. There are so many substitutions for wheat- but low histamine is very challenging. there is GF pasta, pizza, bread, desserts- so many options! Walmart has a lot of GF options. Obviously any processes food isn’t super healthy, quality wise. But it’s easier than ever to go GF! You can buy Pamela’s GF flour and make cookies, quick breads, pancakes etc. no will notice. I would personally start GF and go for a few weeks or months and then work on low histamine if you need to. Basics of LH diet: no leftovers, nothing processed, no dairy, no sugar, no dried spices, limited fruit, no beef or fish and the list goes on and on. There’s no subtle or easy way to do low histamine. It is extremely limited and should only be attempted full on if you have very strong reasons to suspect. I’d look up high histamine foods and maybe just cut back on those first (beef, tomatoes, spinach, bananas, strawberries, cheese, chocolate, yogurt and of course gluten)
  7. I am slowly trying to work towards regaining health- as a concussion, POTS and MCAS have come to me in the last 6 months. My limitations with POTS are pretty significant- all exercise needs to be recumbent because my heart rate skyrockets when simply standing I essentially need to build fitness and strength while seated and then go from there. But not too intense- my body is hyper reactive right now and I'm just coming out of a month long flare which has been h3ll. Pushing thru anything even mildly hard, is a bad bad thing and I will pay for it with cascades of random norepinephrine/adrenaline dumps for days. So- I'm looking for floor based Yoga workouts to complement my recumbent bike. Needs to be super gentle but still mildly challenging so I don't lose interest. I have a basic familiarity with Yoga (and very familiar with Pilates, but bored with it) but don't know where to even start finding something that fits. Lots of extremes in yoga- I've found intense and fast power stuff and really zen and 'just sitting here breathing'...looking for a middle ground. Suggestions? THANKS!
  8. I have Celiac so I get super excited when I see prepackaged items labeled so I know its safe. I know that sounds nutters, but when in groups, safe food is a big deal for me. This year I've just been diagnosed with MCAS and eating a bland, low histamine diet. So I will now just spew all of my favorites appetizers on you since I cannot eat anything other than organic plain chicken and veggies. Our family LOVES appetizer dinners- its our go to for most special occasions that don't require a BIG meal. I have several favorites from before being DXd with Celiac. Fig crostini with crumbled goat cheese, homemade 7 layer dip, fresh black bean, corn & cilantro salsa, room temperature cheese platter, jalapeno spinach dip, real bruschetta, spicy/sweet meatballs, stuffed jalapeno wrapped with bacon, hummus and veggies, warm brie with pears and apples, curried cauliflower bites. My kids love ChickFilA nuggets platter, crabcakes, summer sausage, cheese and crackers, shrimp cocktail, spring rolls, crab rangoon, veggies & dip, cucumber greek salad in small bowl (basically anything in a small bowl), caprese kabobs, olives & pickles ENJOY!
  9. I would preemptively take additional antihistamines the day before to see if that helps.... natural or OTC or both.
  10. This is me. I’ve been on 5 cruises and probably won’t go again anytime soon (due to health issues) but also because I’m even more uncomfortable with crowds noise and flashy things 24/7 for a vacation. But we also went on low cost, older boats that didn’t have all the frantic bells and whistles. The promenade deck on older boats was where we spent a lot of time on sea days...reading, DD was drawing, listening to audiobook, and DS kept going to get ham and cheese sandwiches. The library with games was great. Simple having coffee and listening to jazz was lovely. We saw movies on deck at night which was so neat. I mean there is soooo much to do on a ship I think it’s more of a physiological issues to say you’re bored. I personally am thrilled with quiet and down time when traveling to new destinations- it helps me balance things oit. I can’t just do NEW FUN AMAXING things for a week straight. I went with my sister on a cruise and on the one sea day, she needed spa treatments, wine tastings, and a very.eventful.day that went into comedy shows, late dinner and such at night. It was fun but not my speed. maybe that helps?
  11. I’m a strong HSP who is no longer homeschooling...but when I was HS it was crucial to have daily quiet time and for me to have time alone in the weekend. I was able to keep in balance that way- also running/exercise. I believe some HSP aspects overlap significantly with dynamics found in introversion, migraines, anxiety and chronic stress. I recently sustained a concussion and subsequently developed severe POTS/Dysautonomia (dysregulated autonomic nervous system) which has served to make me even MORE sensitive and intolerant of external stimulation as well as almost completely intolerant of stress not to mention. Now, the phone ringing will send a wave of adrenaline thru my body. Literally. Like HSP on steroids. Without delving into all the symptoms, suffice to say my nervous system command center no longer functions properly and disrupts all body systems. There is no one cause but a large number of women with POTS are the go getters. Not necessarily empathetic though. My point is the nervous system is a mysterious thing- dimensional, adaptive and highly complex. I asked my Dysautonomia Dr about the “why” of POTS and as a researcher she has no answer but as a clinician she has a theory that patients she sees have nervous systems that are more highly toned (like Vagus nerve)- and that those of us with POTS tend to be the movers and shakers and go getters. I asked her is she had heard of HSP designation- she had not. I see many similarities. Interesting stuff.
  12. may I ask what is a serious flare for you? How long did it take you to discover your triggers?
  13. Dysautonomia is the umbrella term that describes dysfunction of the nervous system- POTS is one of several conditions under that umbrella. I think I may have set a record for fast diagnosis to seeing a specialist to seeing a super specialist. It usually takes years. My situation is unfortunately severe and distinct which actually works to my diagnostic advantage. I’m a researcher and problem solver so I take credit for advocating this far. Dr is an internist (complex multi system disease) who deals with the disease cluster normally found within Dysautonomia/POTs world. She is one the handful in the US and happens to be 45 minutes from my house. I’m very fortunate.
  14. My concussion saga continues. It triggered POTS Postural Orthostatic Tachycardia Syndrome (the hyperadrenergic subtype), a moderate-severe case. It’s changed my life as if the concussion wasn’t enough. I met with a Dysautonomia specialist and she suspects I have several other autoimmune conditions in play as well as Small Fiber Neuropathy in my feet, Raynauds, Inappropriate Sinus Tachycardia, APS (clotting disorder) and MCAS which is Mast Cell Activation Syndrome. Some of these have likely been lifelong. Some were triggered in severity by concussion and POTS. It’s overwhelming. I’m headed in for 63 blood and urine tests (including stuff so rare it’s only run by Mayo), a brain MRI and more cardio workups this week. MCAS is a beast. Anyone have experience?
  15. I hated Instapot. It took sooooo long to get up to and down from pressure. It worked but was hardly instant (like cauliflower and spaghetti squash). I prefer a slow cooker and low and slow. i love my air fryer. We have 2 of them- 6qt from Costco but only one is on the counter I use it for salmon, frozen fish, roasted veggies, fries, bacon, cooking chicken from frozen, breaded chicken, reheating leftovers, hot dogs, pizza... the chicken wings are not breaded and cooked from frozen. So yummy! It’s my favorite way of cooking chicken tenderloins - i cook from frozen and they are perfect every time. It’s quicker and easier than a whole oven and my DH likes it for reheating things with a timer- not mushy like the microwave but crispy. I like that it cooks by a timer feature so it’s precise. I LOVE Quick roasted frozen veggies - they get a little bit of browned bits and so easy with a little pile and salt and pepper. I wash ours in the dishwasher .
  16. We use MediShare with an $8000 total family deductible (family of 4)- paying $365 a month. It’s Christian based and we've been very impressed. We’ve had 2 ER visits, emergency CT scan for me, emergency ultrasound for DS by urologist, several specialist visits and multiple Dr visits and we still haven’t hit deductible. Everything is Re rated/discounted for cash pay. Had I known it would be this extensive of medical needs, I would have paid full price and hit the deductible and gotten all the help I needed sooner. This is the biggest medical year we’ve ever had- we are fortunate. Prior to this year, we are very low use. On marketplace it is $985 per month for our family of 4 and an $9000/$16000 deductible. That is worthless. MediShare works for us and I’m so grateful. I miss having regular health insurance but since our health system is a mess this may be the best anyway- I can choose the Drs I want.
  17. GF meatballs, GF cream of mushroom soup (if you use canned soup for base) it GF flour for white sauce and GF noodles. Im actually making it this week 🙂 I don’t use cream soups, so I make a white sauce with beef broth, add Worcestershire sauce, a little red wine sometimes and Dijon mustard.. Minced garlic and onion and then add cream cheese and sour cream at the end.
  18. I don’t make many normal casseroles - It’s more main dish that I add salad or sides too. I’m GF so assume substitutes. Beef and Broccoli (Slow cooker) with Rice Mockafoni and Cheese with Ham Enchiladas (green and red) Carnitas Tacos- pork butt cooks all day in slow cooker Greek pot roast (roast, lots of garlic, oregano and Diced tomatoes in slow cooker all day) served with rice - tomatoes cook down to a nice sauce I always trends towards a variety of soups for large crowds during cool months. Add bread and salad (our favorite soups: Zuppa Toscana, White Bean chicken chili, Beef veggie, chicken corn soup (A PA Dutch variety), broccoli cheddar, French onion, Enchilada soup)
  19. I’m a massage therapist and used warm basalt and ceramic stones- I used a xl heating pad (fold in half and put stones in the middle) for a consistent and adjustable heat.
  20. I feel your pain. Its a head scratcher how some people like to arbitrarily decide what is best for others. That's a lot of odd choices, timing wise- considering your vocation and time of year, and especially since you are the only ones with younger kids who would need a lot of logistic juggling to even consider.. People just don't think of others, much of the time. My Inlaws (parents and siblings) have a nasty habit of planning entire get togethers 'for the whole family' without actually speaking to the whole family to see if it might even work. They decided to have Christmas here in my state because it would be FUN! and GREAT! and CONVENIENT! for a few of them. Too bad they made the plans first and asked second.....we already bought tickets in July and won't be here and no, won't change our flights. Sigh. Last year my sister in law mentioned she was coming here over certain dates- we said great. Then without talking to us she booked the flight for 2 weeks laters and we already had plans to be out of town. She was furious and it turned into a huge deal because she was 'caught' be a self absorbed person.
  21. That's so impressive and I'm so happy for him- what a feeling!!! I hope it is the start of a new way of living for him- and that he is learning a lot along the way. For many of us, weight control is a lifelong enterprise. 🙂 And after allllllllllllllllll of the crap you've taken here on this board in voicing your concern and wanting to help or assist him, I appreciate that you came to share his success!
  22. Do you know what comes with the RV in the kitchen? We rent out 2 campers/travel trailers and include a coffee maker, pots and pans, dishes and utensils and so on. Not having those things will make a difference. I’d figure that out. Will you have electric hookups every night? I’d make sure. 😜 If so, crockpot meals could work really well if you have ur RV parked and hooked up during the day. Buuuut, if you are changing spots every night (and I would advise against that if you have any choice because it burns up so much time with set up and tear down - but that’s just me) that won’t work. Assuming it has a freezer, I often cook ahead of a trip. So much simpler. Chili, soup, sloppy joes etc anything helps. I would suggest disposable plates etc. Many people in a small space is fun but will create a lot of dishes and believe me (I’ve cooked Tday meal 2x in my camper) those dishes add up and are a pain to do in a small space. Chances are the table won’t seat you all and some will have to eat outside or elsewhere inside if weather is bad. Number 1 tip? Don’t over pack. 1 bathroom for 9 people? Take 1 tube of toothpaste. That kind of thing. there is always storage but you will be shocked at how quickly it fills up. Think all of you in a hotel room with a kitchen and plan accordingly. Have fun!!!!
  23. No the free Apple Watch and health apps do a lot!!! But honestly the watch is $400-$500 so a $3 app is nothing 😜 There is a $2.99 Cardiogram app that is pretty helpful for me- but not necessary.
  24. DH got me an Apple Watch for the ECG feature and heat rate monitor....it’s super simple, the built in Apple Watch APP on my phone, saves all ECGs automatically and categorizes them (inconclusive, AFib, low/high rates) and my cardiologist actually looked at my inconclusive ones. Literally took my phone and scrolled thru them. So cool! I don’t have an AFib issue- my prob is tachycardia due to POTS and the Apple Watch is support helpful for tracking my heart rate even though I’m pretty accurate at guessing bases on how I feel LOL
  25. Updated 9/24: Its definitively POTS. I went to a electrophysiologist (specialized cardiologist) today and he did a lay/sit/stand test in office, looked at my Apple watch data, some home videos where I documented HR going from 80-130 from sit to stand) and other random tests I've done (BP is jumping too) and declared its POTS. OK, he didn't say the words- DH & I were laughing at that later., but that's what the chart says. I think he was annoyed that I was so prepared, informed and actually right with my self "dangerous internet" diagnosis. He talked to me about dysautonomia, lifestyle changes and offered drugs- which I am declining for now. I go back in 4 weeks to see if changes help stabilize me (electrolytes, compression, salt and exercise). He also "explained" that its common in high strung people, said some blatantly wrong things, and argued with me over details (instead of 90 oz of electrolytes, I should be drinking 80-85 oz a day). Sigh. He said don't go on the internet because people are crazy. I didn't point out that the crazy internet is exactly what helped educate and prepare me and saved me YEARS of suffering. I was prepared for all of his nonesense because of the POTS groups that have the horror stories of terrible drs who are dismissive and awful and the tactics they employ to cover up their lack of knowledge. When I asked about hyperadrenergic POTS today (which is the subtype I may have, given the rising BP upon standing), his face went white and blank. I knew I had reached the limits of his knowledge and that's ok. I didn't expect him to know. I had 5 studies printed and ready to hand him (from Mayo, Cleveland clinic etc) about POTS (treatment, diagnosis, comorbities etc) but decided to keep them to myself. He's not a specialist in POTS and frankly, i knew more than he did, but i knew he knew enough about POTS criteria, to diagnose. And that's what I needed today. On the plus side: He looked at my ECG data from my Apple watch, which was shocking and awesome- I've had several inconclusive results. Apparently that's a thing in cardiac world- they actually look at Applewatch data and consider it valid enough to review. Who knew?!?!?! He looked at them and said I was still in sinus rhythm and had no reason for concern. HUGE relief. Gave me instructions for future sustained tachycardic episodes and cleared me for exercise. Didn't order the battery of tests I was prepared for- SUCH a relief. I didn't think there was any reason to do the tests, all of my issues are normal in POTS, but assumed I might because, well, Drs. I'm scheduled to see the dysautonomic specialist at the end of November (her schedule filled up rapidly in the last 2 weeks) who will be the one to help manage and tweak and research. As of today, i am going to keep that appointment. In the big pictured I'd rather know as much as I can even though I can't handle the information today. I just wanted to say YES you can read stuff on "the crazy internet" as he said today, and still accurately assess, understand and tentatively diagnose yourself for POTS.
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