Hi I’m Caroline and in the UK. I’m not exactly new here, I’ve been hanging around for months, reading a few posts and stuff. I’m currently having an 18 month long flare up which is making it really hard to function. About 12 years ago this wouldn’t have been a major problem but these days I work full time as a teacher. I’m the only one in my family who’s been well enough to work and what with covid and stuff and we have a lot of debt so I’m struggling along trying to do my best at work, while home descends into a filthy, cluttered hole.
I’m lucky that I have friends who understand how I feel, but I’ll be honest, before this current flare it has been over 15 years since I’d had one and I can’t get used to the permanent exhaustion. It’s really getting me down 😢 #fibroflare #SpoonieProblems #Working
Hi, my name is sarbear3333. and I've been diagnosed with these and many more
#MightyTogether #ManicEpisodes #BipolarDisorder #BorderlinePersonalityDisorder #Depression #Anxiety #ADHD #IntermittentExplosiveDisorder #Addiction #PanicAttack #IronDeficiencyAnemia #congenitalheartdefect/Disease #MentalHealth #ChronicDailyHeadache #NicotineDependence #SituationalDepression #OpioidUseDisorder #obsessive-CompulsivePersonalityDisorder #SocialAnxiety #SeparationAnxietyDisorder #GeneralizedAnxietyDisorder #Arthritis #PulmonaryArterialHypertension #CervicalCancer #SleepTerrors #sleep-WakeDisorders #Bronchiectasis #Recovery #complexpost-traumaticStressDisorder #DegenerativeDiscDisease #Disability #FemaleOrgasmicDisorder #SuicidalThoughts #PanicDisorder #Arrhythmia #PTSD #Migraine #Scoliosis #Hypersomnia #PostpartumDepression #CocaineDependence #Asthma #ParanoidPersonalityDisorder #RheumatoidArthritis #AcuteStressDisorder #polycysticovarysyndrome(PCOS) #Fibromyalgia #BriefPsychoticDisorder #hair-pullingDisorder # #PelvicOrganProlapse #Relationships
Part 1 of 2 Taking my health into my own hands after receiving letter of dismissal from medical services
After receiving a letter of dismissal from medical services from the Kansas University Physician’s Network in November of 2021, I fought back by contacting every agency I could think of to advocate for me—KU Patient Relations, Humana Quality of Service Department, the Federal Comptroller’s office, and several attorneys—to no avail. This dismissal was at a critical juncture in the treatment of chronic lung conditions including: Sputum sample lab result of Fusarium, #Bronchiectasis, #Asthma, pending CT scan for #LungCancer screening, and pending sweat chloride test for possible mild or moderate #CysticFibrosis.
I am still working with a Humana Social Worker to find a new healthcare provider. However, I am one who refuses to just sit on my butt and complain. As soon as I received the letter from the third law firm declining to take my case, I got busy researching these conditions—medical journals, scientific studies on the latest treatments. From the information about medications and practices used in treating these conditions that I gathered from these sources, I then searched for comparable naturopathic and homeopathic alternatives which I could employ myself at home.
While I have no licenses or certifications to diagnose, treat, or make healthcare related recommendations to anyone, I would like to share what I’ve been doing to help myself heal.
I am currently addressing the most serious issue which is Fusarium in my lungs. In my effort to obtain treatment, I went to two other hospitals. The second one did me the service of providing me with a CT Scan. The CT scan showed a 5mm nodule in one of my lungs. My discharge instructions were to follow-up in one year.
This was upsetting to me; because, after the first sputum sample I provided showed Psuedomonas aeruginosa in my lungs, the primary care doctor I had at the time said it would be important to determine whether this was a true infection or a colonization of the Psuedomonas. This statement was confirmed to me by an email response from a microbiologist at the Centers for Disease Control answering my question about Psuedomonas.
When the second sputum sample I provided was determined by the lab to be free of the Psuedomonas after a course of Levofloxacin; but, now contained Fusarium, I did more research to try to find out what that might mean because the Pulmonologist told me, “Everyone has Fusarium in their lungs, I’m NOT treating it.”
It turns out that Fusarium is just as treatment resistant as Psuedomonas. The doctor was correct, in a manner of speaking; because, everyone is exposed to Psuedomonas and Fusarium in just day-to-day living. The two micro-organisms are present in the soil and water. We come across them everyday. Our immune systems address these pathogens as a matter of course and we are usually unaware we have even been exposed…unless, a person has pre-existing conditions which are exacerbated by the presence of these microbes or if a person is immunocompromised, then it can be life-threatening.
Take someone like me with #Bronchiectasis, #Asthma, and possible #CysticFibrosis. The first two make it difficult to clear the airways of pathogens—the #Asthma because it creates a thick, sticky mucus making an ideal environment for pathogens to take up residence; the #Bronchiectasis because the airways are enlarged, scarred, and have less functionality in expelling mucus build up. #CysticFibrosis patients have similar issues. They quite often suffer with colonizations of Psuedomonas, Fusarium, or Aspergillus. Aspergillus and Fusarium are frequently mistaken one for the other because their structure is very similar. These colonizations have life cycles which can include true infections.
The most common way, aside from noting symptoms of fever, to determine whether there is a true infection or a colonization is through a CT scan. Detection of a nodule in the lung is the evidence that there is likely an infection. The treatments for infection vs. a colonization are a bit different. Either way, treatment is necessary.
Taking all of this into consideration and the fact that I have been denied treatment, this is what I’ve been doing for myself and why:
Hi guys I‘ve set up a new group for people with selective antibody deficiency( also called impaired polysaccharide responsiveness or specific antibody deficiency). I‘d love to see some of you over there that either have this primary immunodeficiency themselves /know someone with it or just want to chat about related topics. The name of the group is „selective antibody deficiency“.
I will use this opportunity to talk about this disease and spread awareness. Selective antibody deficiency (SAD/SADNI) is a primary immunodeficiency. In SAD-patients the immunesystem fails to produce IgG antibodies towards polysaccharide encapsuled bacteria. The consequences are many recurrent infections of the upper respiratorytract, sinuses, ears and much more that are hard to clear. This can lead to end organ damage (e.g. bronchiectasis) In about 80% of SAD cases the Patients suffer allergies, asthma and/or other atopic manifestations. This doesn’t mean that you should worry you have SAD just because you have asthma or allergies. SAD is (like all other primary immunodeficiencies) a rare disease and it is much more likely that you just have asthma / allergies.
Only so it is clear: I‘m not a doctor what so ever, this is only to spread awareness.
I’m (slowly) trying to organize my life so the everyday tasks don’t take so many spoons and to ease my OCD anxiety, but I’m struggling to figure out good systems for my medical supplies (not many home improvement blogs cover that lol). Anyone have a system they like and what do you like about it? What do you keep in arms reach vs the closet or bathroom? Right now I have an IV pole and port supplies, nebulizer machine(s) and supplies, the vest, oxygen concentrator and tanks, at least 4 sharps containers, plus the usual mountain of medications, including a bunch in the fridge. Medications I can kind of think of in terms of daily, weekly, etc, but some of these things just take up too much space!
#ChronicObstructivePulmonaryDisease #Bronchiectasis #Fibromyalgia #ObsessiveCompulsiveDisorder #Asthma
Is it true if you have bronchiectasis, you can't have kids?
Hi! I’m new here but excited to meet people who actually understand. I’ve had bronchiectasis for probably 5-6 years but was only diagnosed 2 years ago. It used to be what I would call cycles of pneumonia where I would start to or get sick, go on antibiotics, recover and feel better until the next round hit. Last February, though, I got what had to be COVID and haven’t recovered since, just alternated between 2 nasty types of pneumonia. In the past six months I’ve had at least 5 midlines for various IV antibiotics, though neither those nor my pain medications seem to be working anymore. Given how long treatment is taking and the damage antibiotics can’t fix, the doctor wants to try a port instead and get me evaluated by a transplant center. I guess my question is has anyone experienced anything like this? Does it get any better? I’ve had chronic pain and asthma most of my life, but in the past few years I went from thriving independently at grad school to living in my childhood bedroom and rarely leaving the bed. I don’t know how much longer I can keep fighting when I can’t envision recovery anymore and the treatments keep getting more invasive.
Thanks for listening ♥️