Autoimmune Immunodeficiency

Both my kids are persevering with multiple serious medical problems. I’m a single mom with very limited family, friend and community support. I’ve nearly died three times this year and 1-2 times every year for the past six years. My kids are very depressed about almost losing me again. My kids both have treatment resistant depression, CPTSD, endometriosis/ademomyosis,
rheumatoid arthritis, Crohn’s, epilepsy, polymigratory arthritis, degenerative spine disease, scoliosis, reynaud’s syndrome, cardiac issues, migraines and fibromyalgia, complex regional pain syndrome. The crushing guilt of being an ineffective mother, giving birth to two children who each have 5-6 illnesses inherited from me and their father who hurt them physically and emotionally especially when I was in the hospital getting 8 reconstructive spine surgeries with hardware, screws, plates in nine years covering most of my spine. My son is autistic spectrum disorder high functioning and affectionate. I’m so lucky to be here for my kids with my kids. I understand that without emergency surgery and a fully invasive opening, I wouldn’t be here today. I’m grateful to Gd for saving me. What have I done to my kids. I wasn’t so sick when I got pregnant. I didn’t know when I got pregnant that the kids father’s side has most of the same illnesses and there are many. Now both my kids, as they mature, their health diagnoses increase to longer terrifying lists of diagnoses including many of my dozens of disorders including from Crohn’s, epilepsy, an unspecified connective tissue disorders, immune modulatory disorder, endometriosis, interstitial cystitis, seronegative rheumatoid arthritis, primary immunodeficiency disorder, MGUS/multiple myeloma (monoclonal gammopathy of unknown significance), demyelinating syndrome like MS without known disease prognosis. This year I almost died three times from necrotic aspiration pneumonia with large abscesses in my lungs. I am eligible for the reversal ileostomy surgeries (2 surgeries- the first 8-10 hours is almost as devastating as the emergency colectomy. There’s a small window (4months) when surgeons can do this. It’s my only chance to get my life back to live w/o an ostomy. It’s a long process after surgery and the stoma is repaired in a follow up surgery. I need this surgery. It’s a long long recovery and major surgery with many complications. How can I do this to my family? I worry that my son & daughter can’t handle this much disruption, stress, sadness. We have such little support and no one called my kids to check on them as the plan we created was supposed to happen in emergencies. No one called. Every one gave excuses, so disappointing. Such a problem for future surgeries. I know they should be independent by now yet given their medical status, being an independent young adult is very challenging. I’m so thankful to my daughter who has been helpful beyond any thing I could have hoped for. She’s incredibly giving and loving to me. It’s hard to be here. Not functional, not effective.

#UndifferentiatedConnectiveTissueDisease #MixedConnectiveTissueDiseaseMCTD # primaryimmunodeficiencydisorder #PrimaryImmunodeficiency #AutoimmuneImmunodeficiency #CrohnsDisease #PTSD #ComplexPosttraumaticStressDisorder #ComplexRegionalPainSyndrome #CongenitalHeartDefect #Epilepsy #RheumatoidArthritis #DegenerativeDiscDisease #Scoliosis #InterstitialCystitis #Pneumonia #AspirationPneumonia
#necroticpneumonia
#Gastroparesis #gastrointesinlbleed #RheumatoidArthritis #singleparent #SjogrensSyndrome #DiffuseIdiopathicSkeletalHyperostosis #Diabetes #ComplexPosttraumaticStressDisorder #Ileostomy #Colectomy

Hi, my name is lauraburgstaler. I want to

#MightyTogether #Anxiety #Depression #Migraine #SystemicSclerosis #Scleroderma #CRESTDisease #AutoimmuneImmunodeficiency #Undiagnosed

Stem cell therapy is completely cost prohibitive in the USA, where I've been quoted treatments cost around $5000 dollars each from two different sources. I've been told by my CFIDS specialist that the treatment should be done every 3 months.

So I have a Christian holistic doctor with an MD educational background that amazingly offered me Chinese stem cell therapy at her cost, which was quite cheap since she had it shipped over with an order combined from a total of 3 doctors. I started it just over 2 months ago. I have autoimmune thyroiditis and immune deficiency. What I can tell you is that I felt a decrease in pain in my neck, where I have the most pain, but the effect was strongest right after I got the shot in both elbows, and it doesn't completely remove the pain. I still have to do my neck exercises and stretches and get adjusted by a chiropractor every three weeks so it doesn't become too painful for me and turn into headaches. I didn't notice an effect on my energy levels, but I got COVID-19 four or five weeks after the treatment, which hasn't helped me determine the results very well.

My doctor also has access to placenta stem cell therapy, which I would have preferred, but she wanted to try Chinese stem cell therapy on me first.

Thanks to keepontruckin at phoenixrising.me for showing us even better news on the current research for improvement on stem cell therapy for autoimmune treatment at Mayo Clinic here Scientists pioneer immunotherapy technique for autoimmune diseases

Will this new modified treatment turn out to be a less expensive option?

To understand the differences between Chinese and placenta stem cell therapy, here is an article entitled Development and regulation of stem cell‐based therapies in China and another article entitled Placental-derived stem cells: Culture, differentiation and challenges

#ChronicFatigueSyndrome #MyalgicEncephalomyelitis #AutoimmuneImmunodeficiency #HashimotosThyroiditis

So I got COVID-19 for the second time just over 2 weeks ago, and am unvaccinated. I have increased fatigue from the first time I got it more than 2 years ago, which has left me unable to work, whereas previously, with lots of treatment, I decreased my fatigue enough to work part-time.

I have CFIDS with immune defiicency and autoimmune thyroiditis. So I can't take any vaccinations using an autoimmune delivery system, which leaves only Novavax.

The only reason I would be interested in taking Novavax is to prevent Long Covid to try to get working again, since I have strong lungs and don't end up in the hospital with COVID-19. I am still trying new treatments for my immune system.

So have you taken Novavax, and if so, what was your response to COVID-19 after taking it? Are you immune deficient?

Thanks so much for responding to this. If you wish to speak more privately instead of posting here, please don't hesitate to message me.

#ChronicFatigueSyndrome #MyalgicEncephalomyelitis #HashimotosThyroiditis #AutoimmuneImmunodeficiency #COVID19 #longcovid

Had my big toenails and 3rd toenail on left foot, 4th on right removed the 23rd due to chronic ingrown toenails and infection. They had been hurting more and just not healing right, having discharge that was not pretty. I had this going on for a few days, kinda ignored it in hopes wound care alone would take care of it. Well I finally broke down and went to urgent care. All 4 especially the big toes are highly infected and spreading towards the ball of my feet. After a scolding from the PA and me sweet talking him, we are going to try treating this outpatient. I really don't want to go in hospital. Well now I feel like crap physically and mentally cause I waited. I feel guilty for ignoring the signs, and just plain ol tired.

Hi, my name is MistiMiles22. I'm here because

#MightyTogether #Anxiety #Depression #BipolarDisorder #ADHD #RheumatoidArthritis #Crohn 'sDisease#Lupus #AutoimmuneImmunodeficiency

I got pneumonia.

Aside from the daily challenges, which offer surprising variety and mystery along with the pain, physical discomfort and brain fog.

I just want to scream, I'm so done rn. Or have someone else scream for me, I'm too tired and sick to do it myself.

Hard to keep my eyes open, hard to swallow, revolted from the honey candy im taking to soften my throat and swallowing... just too much at once.

And I missed halloween with my niece.

#rantover #Arthritis #Fibromyalgia #AutoimmuneImmunodeficiency