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JaneEyre9

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  1. I believe you can ask your doctor for a tdap titer to check your current immunity level. If you are still immune, you can put off getting a booster. Vaccinations are designed to stimulate the immune system. This is fine in most people, but we all have different genetic predispositions. Dr. Grubb has done research indicating POTS may be autoimmune in nature. It sounds like it's wise to be cautious in your case.
  2. My reaction depends on what I'm taking. It could be anaphylaxis from contrast dye or loose stools and cramping from a supplement or hives from an antibiotic. I have had many, many reactions over the years. I have to take a few supplements regularly, and I just had to do trial and error until I found more natural ones I could tolerate. There are some natural ways to help your thyroid. You may want to look into "The Root Cause." What did your doctor suggest to heal your gut? I had to make some major dietary changes and work on healing my gut lining. My signature has some of the things I tried. It was not an easy road, but it gave me some major improvements. Don't give up! You may also want to inquire about mast cell activation. I have not been treated for it, but I know some people here on DINET have had this issue.
  3. You may want to look into leaky gut syndrome. I have POTS and multiple chemical sensitivity due to mold exposure. What helped me was healing my gut. I saw an MD through integrative medicine at the Cleveland clinic. My heart goes out to you because it's very difficult to find medications, vitamins, and supplements that agree with me.
  4. Simple Kneads makes a gluten-free and organic sourdough bread that I find easy to digest. I discovered it when a friend from DINET recommended it to me.
  5. I took melatonin once, and that was it for me! I ended up in the ER. Afterward, I remember reading it can lower BP, so that is likely part of why I couldn't tolerate it. Sleep problems are so difficult! I had some luck with wearing blue-light blocking glasses before bed. They are pretty cheap on Amazon. Some of the other things that helped me heal in general are in my signature below.
  6. I had presyncope when my eyes were dilated many years ago. I was very sick then. It probably affects each individual differently.
  7. @RobinB I was just like you, reaching for convenient snacks and easy-to-prepare comfort foods. It is so hard to cook anything when you feel that bad. The turning point for me was when I had to cut out processed foods, grains, dairy, and sugar - basically everything I liked to eat! I ate very simply at first - lean protein like turkey or fish or chicken with cooked vegetables. I still limit high sugar fruits and stick to green apples, pears, and berries. I noticed improvement in my dizziness within the first couple weeks. I was also low in vitamin D and needed to supplement that. Some other supplements I found helpful are listed in my signature. L-glutamine, collagen, and the probiotic "paracasei" are all known to help heal the gut lining. Enzymes also help with digestion. If you can make some homemade soup (good source of collagen) on a day you feel decent, or if you can get someone to help you, the soup can be frozen in individual containers to heat and eat when you feel unable to cook. It takes some creativity and determination, but healing can happen. After many years stuck in bed at home, I was gradually able to regain function in many areas of life - activities like travel, hiking, cooking, and shopping, etc. There are many factors a doctor would need to consider to help you find the right diet and supplements for your personal needs, but it is well worth the effort to heal the gut. If your gut is permeable like mine was, foreign proteins and particles can enter your bloodstream and keep your immune system on high alert. By healing the gut, it creates a barrier so your immune system isn't always reacting to these invaders.
  8. Just want to offer some support and encouragement. Like you, I was very active and then POTS hit me like a train. I was completely incapacitated and stuck in bed at home. This is not due to laziness. It is (from my understanding of current research) an autoimmune disorder that affects circulation as well as other systems of the body. Childbirth is a common trigger for POTS symptoms. What helped me to recover my health back was to drastically change my diet to be anti-inflammatory and to take vitamins and supplements to heal from intestinal permeability (aka leaky gut syndrome). Your diarrhea and frequent urination are very familiar to me. I'd encourage you to see if you can talk with the functional medicine specialist and see if they could recommend some first steps to you without doing such extensive testing. My medical history was enough for me to be diagnosed when I saw Integrative Medicine at the Cleveland Clinic, and her recommendations started me down the right path. For exercise, the recumbent bike is great for POTS. Other ideas that help the nervous system are gentle yoga and tai chi. Wishing you the best - I empathize with how discouraged you must feel!
  9. I forgot to add that I also gargled daily with Periobrite mouthwash to help my throat. It felt like that helped quite a bit too.
  10. Hi Scout - I had symptoms back in March but was not able to get tested. I took vitamin C, wobenzym, and vitamin D. I also put a couple drops of (Garden of Life) oregano oil in hot steaming water and breathed it in deeply with a towel over my head and the bowl. I did that once a day while I felt sick, and it really helped my chest tightness and shortness of breath improve. I hope you don't have the virus and that you feel better soon!!
  11. It sounds like you've had a number of symptoms for a long time. It's always a good idea to get any mold checked out as that can make your underlying symptoms worse. It depends on where you live, but the Cleveland Clinic has both integrative and functional medicine departments, for example. Seeing a dysautonomia specialist may also give you some peace of mind. I agree with yogini that most people do improve with the right treatment, and I hope you can get some answers from a good doctor in your area!
  12. Hi Sam10, My initial thoughts when reading this were like what Pistol said - perhaps you picked up a parasite or something unusual in Fiji. If you have access to an integrative medicine or functional medicine doctor, they should able to look at the whole picture and all of your symptoms together. If not, perhaps your doctor could order a stool culture to check for anything you might have picked up while traveling. This sounds awful, and I hope you find some answers!!
  13. Hi Hopeful83 - Your symptoms sounds so frustrating. Not having the right medical help has to feel lonely and scary. When reading your symptoms, a few things came to mind. 1) Do you live or spend time in any place with mold or musty odors? Brain fog and balance issues, along with the taste of blood (metallic taste?) can often go along with mold exposure. (Potentially pesticide exposure as well.) 2) The specialists you're seeing don't seem to be able to connect the dots with all of your symptoms. Do you have access to an integrative or functional medicine doctor who could evaluate your case with your whole body in mind? 3) Have you heard of or looked into intestinal permeability or "leaky gut" ? 4) Did any event or trauma precipitate these symptoms? You have my compassion and my sympathy for what you are going through. It is a rough journey to find answers, but it sounds like you are thinking through the symptoms and pursuing ways to get treatment!
  14. I don't believe licorice root is fast acting. However, keeping low BP up continuously is helpful to try to avoid those crises. If memory serves, our past DINET president Michelle used licorice root to get back to functioning. For a sharp BP drop, position change and IV fluids could help, and of course a vasoconstrictor like midodrine.
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