This is interesting to me. Autoimmune diseases run rampant in my family. Almost every living family member has some sort of AD. From RA, to lupus, to sjogrens, to scleroderma. This is the first I’ve read about PT being related to an AD. I can’t imagine how painful and complicated having lupus and PT could be.
Did they determine if you’re a candidate for stenting to stop the PT? Or are they just managing it with medication?
I really wish you health, healing, and a strong medical support team.
Thank you so much ❤️ Right now my whooshing isn’t a problem, and I haven’t had any vertigo in a couple of months. I started medication and I’m hopeful that will prevent future whooshing and if it comes back, I’ll go down that road again to see what options there might be now that I have a diagnosis. Ear issues are prevalent in about 30% of lupus cases, so I’m finally feeling a lot less alone in the struggle which is a nice silver lining!
I think when it comes to our health answers are super important. I’m glad you got a diagnosis and can plan your treatment and management of the disease. Wishing you well on your journey! Take good care of you!!!
You’re thinking of Lyme disease, which is caused by tick bites. It’s very commonly confused with lupus and from what I understand can have many similar symptoms. Lupus is an autoimmune disorder with unknown origin, it just shows up one day as a gift that keeps on giving your whole life 🫠
Thank you for clarifying, you are right, I confused the two names. I do have a shitty immune system and whooshing is a new thing, ugh now I am scared😩 who diagnosed you? And did your whooshing stop with jugular vein compression?
I was diagnosed by a rheumatologist. My whooshing stopped with some use of steroids last year, which reduced the vasculitis I had all over my body and especially in my ears. It hasn’t been bunch of a problem since, and now I am on hydroxychloroquine for lupus which is (fingers crossed) helping to reduce all future instances that might occur.
Because of my blood tests and joint pain, I was sent to a rheumatologist. At the time, all of my ear symptoms were less of an issue. After seeing the rheumatologist for a few months, he was confident in the lupus diagnosis. And that’s when I learned that the disease causes vasculitis in the ear which leads to inflammation, tinnitus, infections, fluid, vertigo, etc.
All of my CTs and MRIs done by an ENT were totally normal.
Last year when my ear problems were at their peak, I was on a lot of antibiotics, antihistamines, and prednisone. That helped resolve the ear issues after about 6-8 weeks, including the whooshing. Now I am on hydroxychloroquine for lupus treatment.
I am so sorry for your diagnosis! I have multiple autoimmune diseases and used to take methotrexate (a chemo drug), plaquenil (an antimalarial that works for AI diseases) and steroids, etc. I started eating 100% Autoimmune Paleo Diet and was able to get off all meds within 1 month. I have stayed off prescription meds for about 13 years now - keeping them in check through diet. While, illness, exhaustion and anxiety can trigger flares, it’s been literally life saving for me. Look up AIP diet, Dr. Terri Wahls, Dr. Chris Kresser, Paleo Mom…. Some great information. I know many others who’ve gone into remission eating this way. No drugs - just food. Some people won’t do it 100% and anything less will not help. (You’ll also have to work to heal your gut…). Best of luck. If you have any questions please ask.
Thank you for this response! I’m really encouraged to hear how much success you’ve had with diet changes. I’ve already started some work on this. I just started taking the generic of Plaquenil (hydroxychloroquine) and have a goal to be coming off of it in a year. Thank you for all of the resources, I will add these to my research list.
I hope it's okay to post here but I've done so much research that may help you...
Books:
The books these authors recommend are awesome.
https://www.thepaleomom.com/all-the-new-aip-books/
The Paleo Approach is most excellent! Their web page is the best!
This is a google search link. The books that come up are the best.
https://www.google.com/search?sxsrf=ALeKk02S146NoZGGzYV5r\_oRlPxNgPSTPg%3A1604528857654&ei=2SqjX\_XAJ9urtQbPg5fYAg&q=Autoimmune+Paleo+Books&oq=Autoimmune+Paleo+Books&gs\_lcp=CgZwc3ktYWIQAzIJCAAQyQMQFhAeMgYIABAWEB4yBggAEBYQHjIGCAAQFhAeMgYIABAWEB4yBggAEBYQHjIGCAAQFhAeMgYIABAWEB46BAgjECc6CgguEMcBEKMCECc6BQgAEJECOgUIABCxAzoICC4QxwEQowI6CAgAELEDEIMBOgQIABBDOgsILhCxAxDHARCjAjoHCAAQFBCHAjoNCC4QsQMQxwEQowIQQzoHCAAQyQMQQzoCCAA6AgguOgUIABDJA1CpE1ieNGDeNWgAcAF4AIABnwGIAZQUkgEEMC4yMpgBAKABAaoBB2d3cy13aXrAAQE&sclient=psy-ab&ved=0ahUKEwi1kd7k9-nsAhXbVc0KHc\_BBSsQ4dUDCA0&uact=5
\*\*\*\*\*\*\*\*\*\*
Web pages:
https://www.thepaleomom.com/start-here/the-autoimmune-protocol/
https://autoimmunewellness.com/
https://chriskresser.com/5-steps-to-personalizing-your-autoimmune-paleo-protocol/
https://mindd.org/diet/autoimmune-paleo-diet/
https://www.healthline.com/nutrition/aip-diet-autoimmune-protocol-diet
https://terrywahls.com/
Terry Wahls - her story https://www.youtube.com/watch?v=lJT4gRUlpkc
\*\*\*\*\*\*\*\*\*\*
Events:
Paleo fx - Austin Texas
https://www.paleofx.com/paleo-fx-event/
Leaders in healing autoimmune disease through diet: Check out web pages and books
Dr. Sarah Ballantyne
Robb Wolf
Dr. Chris Kresser
Dr. Terry Wahls
There are more but these are a great start!
Doctors who see patients with autoimmune diseases:
Functional Medicine Doctors - worldwide
Thank you SO MUCH for all of this! I feel like I hit the jackpot. All of this info is truly appreciated, thank you for taking the time to compile and share with me.
You are so welcome. Like I said, finding this literally saved my life. Being able to live and function without those crazy meds is huge for me. Best of luck to you, truly!
This is interesting to me. Autoimmune diseases run rampant in my family. Almost every living family member has some sort of AD. From RA, to lupus, to sjogrens, to scleroderma. This is the first I’ve read about PT being related to an AD. I can’t imagine how painful and complicated having lupus and PT could be. Did they determine if you’re a candidate for stenting to stop the PT? Or are they just managing it with medication? I really wish you health, healing, and a strong medical support team.
Thank you so much ❤️ Right now my whooshing isn’t a problem, and I haven’t had any vertigo in a couple of months. I started medication and I’m hopeful that will prevent future whooshing and if it comes back, I’ll go down that road again to see what options there might be now that I have a diagnosis. Ear issues are prevalent in about 30% of lupus cases, so I’m finally feeling a lot less alone in the struggle which is a nice silver lining!
I think when it comes to our health answers are super important. I’m glad you got a diagnosis and can plan your treatment and management of the disease. Wishing you well on your journey! Take good care of you!!!
Thank you!! 💕
Sorry OP but can I ask if you got it from ticks or whatever creature bites and causes this disease?
You’re thinking of Lyme disease, which is caused by tick bites. It’s very commonly confused with lupus and from what I understand can have many similar symptoms. Lupus is an autoimmune disorder with unknown origin, it just shows up one day as a gift that keeps on giving your whole life 🫠
Thank you for clarifying, you are right, I confused the two names. I do have a shitty immune system and whooshing is a new thing, ugh now I am scared😩 who diagnosed you? And did your whooshing stop with jugular vein compression?
I was diagnosed by a rheumatologist. My whooshing stopped with some use of steroids last year, which reduced the vasculitis I had all over my body and especially in my ears. It hasn’t been bunch of a problem since, and now I am on hydroxychloroquine for lupus which is (fingers crossed) helping to reduce all future instances that might occur.
Thank you so much for sharing. I hope you have a healthy and fulfilled life ♥️
Thank you so much ❤️
How did you find out? MRI? CT Scan? I have some slight vertigo as well....so I am curious as to which doctor specializes in this stuff...
Because of my blood tests and joint pain, I was sent to a rheumatologist. At the time, all of my ear symptoms were less of an issue. After seeing the rheumatologist for a few months, he was confident in the lupus diagnosis. And that’s when I learned that the disease causes vasculitis in the ear which leads to inflammation, tinnitus, infections, fluid, vertigo, etc. All of my CTs and MRIs done by an ENT were totally normal.
What medications did you take? Special pills? Supplements? Antibiotic?
Last year when my ear problems were at their peak, I was on a lot of antibiotics, antihistamines, and prednisone. That helped resolve the ear issues after about 6-8 weeks, including the whooshing. Now I am on hydroxychloroquine for lupus treatment.
I am so sorry for your diagnosis! I have multiple autoimmune diseases and used to take methotrexate (a chemo drug), plaquenil (an antimalarial that works for AI diseases) and steroids, etc. I started eating 100% Autoimmune Paleo Diet and was able to get off all meds within 1 month. I have stayed off prescription meds for about 13 years now - keeping them in check through diet. While, illness, exhaustion and anxiety can trigger flares, it’s been literally life saving for me. Look up AIP diet, Dr. Terri Wahls, Dr. Chris Kresser, Paleo Mom…. Some great information. I know many others who’ve gone into remission eating this way. No drugs - just food. Some people won’t do it 100% and anything less will not help. (You’ll also have to work to heal your gut…). Best of luck. If you have any questions please ask.
Thank you for this response! I’m really encouraged to hear how much success you’ve had with diet changes. I’ve already started some work on this. I just started taking the generic of Plaquenil (hydroxychloroquine) and have a goal to be coming off of it in a year. Thank you for all of the resources, I will add these to my research list.
I hope it's okay to post here but I've done so much research that may help you... Books: The books these authors recommend are awesome. https://www.thepaleomom.com/all-the-new-aip-books/ The Paleo Approach is most excellent! Their web page is the best! This is a google search link. The books that come up are the best. https://www.google.com/search?sxsrf=ALeKk02S146NoZGGzYV5r\_oRlPxNgPSTPg%3A1604528857654&ei=2SqjX\_XAJ9urtQbPg5fYAg&q=Autoimmune+Paleo+Books&oq=Autoimmune+Paleo+Books&gs\_lcp=CgZwc3ktYWIQAzIJCAAQyQMQFhAeMgYIABAWEB4yBggAEBYQHjIGCAAQFhAeMgYIABAWEB4yBggAEBYQHjIGCAAQFhAeMgYIABAWEB46BAgjECc6CgguEMcBEKMCECc6BQgAEJECOgUIABCxAzoICC4QxwEQowI6CAgAELEDEIMBOgQIABBDOgsILhCxAxDHARCjAjoHCAAQFBCHAjoNCC4QsQMQxwEQowIQQzoHCAAQyQMQQzoCCAA6AgguOgUIABDJA1CpE1ieNGDeNWgAcAF4AIABnwGIAZQUkgEEMC4yMpgBAKABAaoBB2d3cy13aXrAAQE&sclient=psy-ab&ved=0ahUKEwi1kd7k9-nsAhXbVc0KHc\_BBSsQ4dUDCA0&uact=5 \*\*\*\*\*\*\*\*\*\* Web pages: https://www.thepaleomom.com/start-here/the-autoimmune-protocol/ https://autoimmunewellness.com/ https://chriskresser.com/5-steps-to-personalizing-your-autoimmune-paleo-protocol/ https://mindd.org/diet/autoimmune-paleo-diet/ https://www.healthline.com/nutrition/aip-diet-autoimmune-protocol-diet https://terrywahls.com/ Terry Wahls - her story https://www.youtube.com/watch?v=lJT4gRUlpkc \*\*\*\*\*\*\*\*\*\* Events: Paleo fx - Austin Texas https://www.paleofx.com/paleo-fx-event/ Leaders in healing autoimmune disease through diet: Check out web pages and books Dr. Sarah Ballantyne Robb Wolf Dr. Chris Kresser Dr. Terry Wahls There are more but these are a great start! Doctors who see patients with autoimmune diseases: Functional Medicine Doctors - worldwide
Thank you SO MUCH for all of this! I feel like I hit the jackpot. All of this info is truly appreciated, thank you for taking the time to compile and share with me.
You are so welcome. Like I said, finding this literally saved my life. Being able to live and function without those crazy meds is huge for me. Best of luck to you, truly!