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No Doctor can figure out what is wrong with me
I had a one time 1020 mg Iron Infusion after being diagnosed with anemia after 3 years of severe periods.I had a reaction days later and have never been the same.The day I had the reaction it was hot and I had been exercising on the bike trail in the heat the day before.I was also at the Beach a week prior to my reaction.I had the Pfizer vaccines,but it was the first time I let my guard down around people by not wearing a mask. Months after the reaction I ended up losing strength/sensation in the trunk of my body and can barely walk now.At the beginning of my illness I could hardly swallow and had to live off of ensure for months,trouble concentrating where I would have to walk away, dizzy after eating and my breathing was not natural where I feel like it would pause at times.Hair on my head was coming out too.My hair basically ended up fusing together where I had to cut it short.I had long straight hair and it changed into a frizzy texture.Someone that I know that had cancer compared my hair to their hair after they had chemo.It has barely grown since cutting it last year and it does not grow down,but outward.Some of my other symptoms are trouble swallowing,difficulty getting up from a seated position,extreme constipation,not feeling food going down in my belly or signals that I am full,head feels like a bobble head because of loss of strength,severely dry eyes that feel like they are being pushed out of my head and extremely sensitive to sunlight.My smiling,laughing,chewing and swallowing feel like they are in slow motion from lack of strength in my facial muscles.Originally I could not cough,sneeze or yawn.These sensations are slowly coming back,but they are not as productive because of the lack of strength in the trunk of my body.From the research I have done it seems like the vagus nerve controls many of these functions.We have alot of Family members on both sides of the Family with Lupus.I have had several positive ANA's with 1.80 speckled titer,but the rheumatologists tell me it is not Lupus.I have met with Neurologists,Rhuematologists,Endricinologists,GI Doctors,etc.These specialists can not find much of anything.High Epstein barr titters,little things with my spine and neck and a few vitamins on the low side and extreme constipation.I have had an emg,muscle biopsy,Brain mri,neck and spine mri and nothing.I also had a long covid and Lymes test and thise came back negative as well.The only medicine I take is synthroid for thyroid diseases I have had since my 20's.Does anyone have any ideas what this could possibly be?
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Do your own research on Mast Cell Activation syndrome…..it’s VERY real. You have a LOT of flags for it…..I have it. I lived like you for 7 months…it’s as horrible. It was right after having the booster shot for Maderma. I also already had Ehlers Danlos and now they know I should never have had the booster. Anyway the protons on line for MCAS are generally vegetarian but that made me sicker. I decided that with O+ blood I’d go to the Eat Right 4 Your Type book and eat meat. I got the format for this from Dr Shawn Baker and his book….The Carnivore Diet. Also his YouTube stuff….but it made perfect sense to me. So you might want to try it. I went from 7 months in bed to walking around in 12 hours to today being pretty normal. I do not get off the protocol. If I do i get very tired and sleep a lot and have brain fog and breakout lesions on my face. Not worth it to me. Try it for a few days…..what have you got to lose?…..apparently I was horribly low on proteins you only get from meat. His core program is BBBE. Bacon, beef butter Eggs…..I stayed on that core program for 2 months…..I still eat closely to it every day adding a few things….and lots of chicken and other meats. …….check it out….I know you feel horrible…..been there!! God Bless
Thankyou so much for responding!Someone else had mentioned MCAS too.It is definitely possible that it is involved in what is going on with me.I would not be surprised if the Pfizer Vaccine set this off too.I did not have a booster,but I had the Pfizer vaccine a year before this came on,but it is possible maybe the iron infusion/covid and the vaccine made my body go haywire.I already have Hashimito's and my immune system is not the Best so it would not take much.The lack of strength in my diaphram/sternum where it is supposed be pushing your belly down is just not there anymore.My belly has absolutely no strength either.I guess the signals are not working properly.It is so bizarre and I feel like the vaccine or covid are the only thing that could bring something that weird on.No Doctor I have seen understands what it is because they have not seen anything like it.It is something with the muscles and nerves throughout my body,but it also feels like I am being poisoned everyday.I don't know if the feeling of being poisoned could be the MCAS.I had tests run through an infectious diseases doctor.He was testing me for èverything including Myasthenia Gravis.An antibody for that specific test came back borderline,but labcorp did further testing and they said it was negative.He told me that he would have to diagnose me with CFS even though all of my symptoms don't match up.I think CFS is a real disease,but that is definitely not what I have.I am definitely going get Dr. Baker's Book and try the diet.I am desperate right now.It is so scary when you are sick for years and they can't find much of anything.Even if this is a really weird autoimmune disease I know diet will play a huge part.Thankyou so much for all of your helpful information!I am glad that you are doing better!
You are very brave and never doubt it! It is so lonely and isolating to know something is wrong and have no answer! I just shared the same w a very sick woman whose glucose are frightening and after tons of tests no answers. She eats a lot of carbs and little protein and not much beef at all. She’s going to flip to beef and no carbs and see how she fares w the glucose. ‘We are what we eat’ is very true and beefing up our lives may save them! I just ate a lovely bowl of hamburger 93% fat free and I use Hughes original BBQ sauce which is gluten free and sugar free and tastes like ketchup! I try to make digestion as easy for my body as possible! I take excellent supplements from Dr Becky Campbells web site called Optimal Reset which I think stabilized my Mast Cell histamine imbalance and continue to. I am very grateful to her for creating this for herself. Her vegetarian type program of eating doesn’t agree w me at all! We with Mast Cell are all different so doctors have no handbook for any of us and we have to reach our answers individually. I can’t tolerate one thing with any kind of acid at all! Including Hyaluronic cream! And I absolutely could prior to the shots. It may be that your muscles are atrophied due to your immense fatigue and if you correct one possibly w beef you may have the energy again ! When I started caring about my disorganized closets or the mess in the garage, I was so grateful! That horrid depressing draining lethargy steals your will and is overwhelmed by brain fog! I will hope and pray you find relief! Don’t forget how brave you are! I know it and others do too! Happy Valentines!!! Terri
Thankyou so much for all of the great Information!I am going to look into all of this.It is so hard when you know something is wrong and the Doctors can't figure it out.You feel stuck.I am just praying that things will get better soon.I did drink a ton of caffeine for years especially when covid was really bad.I worked in Healthcare and I felt like it helped with energy,but I know it is so bad.I have always had a horrible digestive system especially already having thyroid disease.I know years ago before I was diagnosed with Hashimitos I had leakygut.Once I was able to heal that I felt alot better.I think I was actually alot more sick before all of this came on and did not realize it.I think like everyone I was stressed during covid and did not realize how much.Thankyou again for your help!I am glad you are doing better!Happy Valentine's Day!