u/Dexterislit

58 year old female, non-smoker (ex-smoker- quit on and off smoking for 15 years in 2008), no alcohol. Chronic illness, symptoms since January 2025 following query viral illness. Respiratory symptoms continue with SOB, wheezing, extreme fatigue, malaise, total weight loss of 44 lbs since onset of illness (current weight 106 lbs, 5’4.5”), asthma was ruled out by respirologist a couple of months ago (CT was taken June 25/26), overall malaise, weakness, unable to walk more than 10 minutes without use of walker due to chest pressure and fatigue. Was admitted to hospital in March 2026 for suspected pneumonia and treated with IV antibiotics for 3 days and discharged home. Symptoms have worsened over last 3 weeks. Comments from specialists are appreciated. CT Results below:

Clinical history: Follow-up of pulmonary nodule.
CT scans were volumetrically acquired through the chest using overlapping
3 mm collimation with low-dose technique. This is compared with a
previous CT pulmonary angiogram performed at on July 29, 2025, reported as negative for embolism.
The thyroid gland is unchanged showing a questionable nodule in the left
lobe.
The mediastinum and hilar structures are unchanged. There is no nodal
enlargement.
The pleural surfaces are unchanged, showing no effusion.
There is no coronary artery calcification. Mild aortic calcium.
Small basal nonspecific pericardial effusion unchanged.
Limited views of the upper abdomen are unremarkable.
The breasts show tiny calcifications on the right.
The central airways are clear.
Right lung shows worsening inflammatory nodularity in the upper lobeanteriorly around image 75, associated with some mucous plugging, mucous
plugging in the middle lobe image 68, 73, worsening nodularity image 73,
significantly worsening opacity in the middle lobe with micronodularity,
band atelectasis, mucous plugging, mildly smaller inflammatory nodularity
in the lower lobe around image 98, remainder not significantly different.
Left lung shows nodule apex laterally image 20 stable, calcified granuloma
anteriorly image 35 stable, new and worsening inflammatory nodularity in
the lingula, nodule anterior basal lower lobe image 96 stable, remainder
unchanged.
The thoracic skeleton shows no significant lesion. There may be small
hemangiomas in the mid thoracic spine.
Impression:
Overall there has been worsening of inflammatory opacities in both lungs
suggestive of atypical infection such as NTM.

58 year old female, non-smoker (ex-smoker- quit on and off smoking for 15 years in 2008), no alcohol. Chronic illness, symptoms since January 2025 following query viral illness. Respiratory symptoms continue with SOB, wheezing, extreme fatigue, total weight loss of 44 lbs since onset of illness (current weight 106 lbs, 5’4.5”), asthma was ruled out by respirologist a couple of months ago (CT was taken June 25/26), overall malaise, weakness, unable to walk more than 10 minutes without use of walker due to chest pressure and fatigue. Consult with Thoracic Surgeon in January recommended seeing respirologist (above). Was admitted to hospital in March 2026 for suspected pneumonia and treated with IV antibiotics for 3 days and discharged home. Symptoms have worsened over last 3 weeks. Comments from specialists are appreciated. CT Results below:

Clinical history: Follow-up of pulmonary nodule.
CT scans were volumetrically acquired through the chest using overlapping
3 mm collimation with low-dose technique. This is compared with a
previous CT pulmonary angiogram performed at on July 29, 2025, reported as negative for embolism.
The thyroid gland is unchanged showing a questionable nodule in the left
lobe.
The mediastinum and hilar structures are unchanged. There is no nodal
enlargement.
The pleural surfaces are unchanged, showing no effusion.
There is no coronary artery calcification. Mild aortic calcium.
Small basal nonspecific pericardial effusion unchanged.
Limited views of the upper abdomen are unremarkable.
The breasts show tiny calcifications on the right.
The central airways are clear.
Right lung shows worsening inflammatory nodularity in the upper lobeanteriorly around image 75, associated with some mucous plugging, mucous
plugging in the middle lobe image 68, 73, worsening nodularity image 73,
significantly worsening opacity in the middle lobe with micronodularity,
band atelectasis, mucous plugging, mildly smaller inflammatory nodularity
in the lower lobe around image 98, remainder not significantly different.
Left lung shows nodule apex laterally image 20 stable, calcified granuloma
anteriorly image 35 stable, new and worsening inflammatory nodularity in
the lingula, nodule anterior basal lower lobe image 96 stable, remainder
unchanged.
The thoracic skeleton shows no significant lesion. There may be small
hemangiomas in the mid thoracic spine.
Impression:
Overall there has been worsening of inflammatory opacities in both lungs
suggestive of atypical infection such as NTM.

58 year old female, non-smoker (ex-smoker- quit on and off smoking for 15 years in 2008), no alcohol. Chronic illness, symptoms since January 2025 following query viral illness. Respiratory symptoms continue with SOB, wheezing, extreme fatigue, total weight loss of 44 lbs since onset of illness (current weight 106 lbs, 5’4.5”), asthma was ruled out by respirologist a couple of months ago (CT was taken June 25/26), overall malaise, weakness, unable to walk more than 10 minutes without use of walker due to chest pressure and fatigue. Consult with Thoracic Surgeon in January recommended seeing respirologist (above). Was admitted to hospital in March 2026 for suspected pneumonia and treated with IV antibiotics for 3 days and discharged home. Symptoms have worsened over last 3 weeks. Comments from specialists are appreciated. CT Results below:

Clinical history: Follow-up of pulmonary nodule.
CT scans were volumetrically acquired through the chest using overlapping
3 mm collimation with low-dose technique. This is compared with a
previous CT pulmonary angiogram performed at on July 29, 2025, reported as negative for embolism.
The thyroid gland is unchanged showing a questionable nodule in the left
lobe.
The mediastinum and hilar structures are unchanged. There is no nodal
enlargement.
The pleural surfaces are unchanged, showing no effusion.
There is no coronary artery calcification. Mild aortic calcium.
Small basal nonspecific pericardial effusion unchanged.
Limited views of the upper abdomen are unremarkable.
The breasts show tiny calcifications on the right.
The central airways are clear.
Right lung shows worsening inflammatory nodularity in the upper lobeanteriorly around image 75, associated with some mucous plugging, mucous
plugging in the middle lobe image 68, 73, worsening nodularity image 73,
significantly worsening opacity in the middle lobe with micronodularity,
band atelectasis, mucous plugging, mildly smaller inflammatory nodularity
in the lower lobe around image 98, remainder not significantly different.
Left lung shows nodule apex laterally image 20 stable, calcified granuloma
anteriorly image 35 stable, new and worsening inflammatory nodularity in
the lingula, nodule anterior basal lower lobe image 96 stable, remainder
unchanged.
The thoracic skeleton shows no significant lesion. There may be small
hemangiomas in the mid thoracic spine.
Impression:
Overall there has been worsening of inflammatory opacities in both lungs
suggestive of atypical infection such as NTM.

Anyone had any improvement in symptoms (not a cure) for Lyme, bartonella? I’m starting at the bottom again (micro dose to start) with this and adding on probiotics soon after. Not even close to restarting treatment again as too sensitive. What if anything, did you notice an improvement in?

Need to vent a little. Not quite sure how to accept and come to terms with not having a mother in my life anymore. I’m almost 60 and this was not my choice. I am an only child and have been shut out by my mother since November 2025. I have been chronically ill for almost 18 months and she said she is unable to be there for me emotionally or physically. She lives 5 minutes away and is married to my stepfather. This isn’t one of those situations where as a mother she can’t bear to see her daughter ill and suffer. She was never nurturing but she was always there and we were very close. We spoke almost daily. I lost my dad suddenly in 2018 and am still grieving that loss. I’m having such a hard time knowing she is very much alive and only a few minutes away and made a conscious decision to not contact me. I feel like I’m grieving the loss of both parents. As an only child I have always been extremely independent and used to doing things on my own but not having any biological siblings to process this with is so very painful. I am on my own with two grown children that have been there for me throughout my illness. As a mother, I cannot fathom ever turning my back on my children if they were struggling. I do not know for certain that my illness (complex multiple issues) will ever get better. These feelings are unprecedented and I find myself going from radical acceptance of the situation to bursting into tears several times a day wishing for something and someone that I already know will never change or even try. My heart is broken and I never imagined this would be my reality at this stage of life. I know there are other things to be grateful for, but this is so isolating on so many levels. Thank you for reading this far.

Is using one to two teaspoons of slippery elm organic powder considered generally safe for MCAS? I have severe epigastric pain, including a hiatal hernia and respiratory issues. I’m hoping for some pain relief but don’t want to cause a flare. Does anyone use this in teas or mixed with plain water and find it beneficial?

Just wondering if anyone has found specific multivitamins or what vitamins have made a difference in overall energy, brain fog, tinnitus and has made a noticeable difference in some symptom relief (I know, not a treatment). I’ve read posts about some B complex vitamins. I also have MCAS so anything super pure and organic and vegan with no filler is best. I’d appreciate any recommendations. I take organic Acerola powder daily for vitamin C and a Vitamin D spray.

Has anyone found relief from acupuncture for Lyme, Bartonella (also have suspected MCAS, dysautonomia), anxiety, vagus nerve regulation, tinnitus?

I’ve read countless posts by people in the same boat. This debilitating disease and the suffering it causes that ultimately leads to suffering in silence when you’re literally fighting for your life. The family that turns a blind eye, the friends lost, the infamous sentence ‘I’m so sorry for what you’re going through, my heart goes out to you’ and then they too walk away. I realize not everyone knows how to relate or deal with sickness, but the loneliness and isolation that we face can sometimes be as cruel as the illness itself. I’ve learned how to entertain myself when I’m not bedridden, but staying at home for yet another Saturday evening alone because I’m too ill to venture out and do anything ‘normal’ is not in the cards and hasn’t been for over 18 months. I’m no closer to getting better, even partially at the moment despite trying. What do my fellow Lyme sufferers do night after night whom live alone? There’s only so much TV I can watch, listen to music, meditation. Due to neurological symptoms I can no longer enjoy reading anything for pleasure anymore. I know there are hundreds of thousands of people out there going through the same thing. Please say hi, I’m close to giving up.

I’ve read so many posts from fellow Lyme sufferers describing the multitude of emotions that comes with having this fucking evil disease. From despair, SI, loneliness, isolation, hopelessness, sadness, to being hopeful, triumphant (few and far between), happiness, success??

It’s hard not to feel we are in this battle alone the majority of the time, especially when we have been diagnosed, treated, failed treatment and an ongoing and relentless search and struggle for help and literally survival has been in vain.

The $$$ spent, the painful treatments and side effects/herxing, the friends and family lost along the way who simply cannot deal with it anymore, the emotional and physical pain we live through on a daily basis (is this really living when you’re unable to work or care for yourself?), the days and nights spent with tears falling down your face.

Not looking for pity, there are millions of us out there facing this alone. Stay hopeful? It’s really hard when you’re in pain every day and are too ill to continue with treatment.

It’s going to get better. Right? Please tell me it’s going to get better. I want to give up. Please say hello and make this day a little better.

I’ve seen mixed reviews on the building. Would love to hear from anyone that lives there now or recently and would recommend or not. In particular, is there a pest problem? Management? Upkeep?

How common is it to experience chronic respiratory issues ie chest pressure, burning sensation and some congestion with MCAS? It feels like asthma, with some mild wheezing upon deep breaths. I’ve seen a respirologist that ruled out asthma and I was on a trial of inhalers at one point that never helped.

I also have chronic sometimes severe epigastric pain. I have a small hiatal hernia that numerous doctors have told me isn’t the cause for my symptoms and had multiple trials of PPI meds that didn’t help. I’m on Cromolyn, Famotidine, Bilastine and was on Singular but discontinued and am currently weaning off of Ketotifen under doctor’s supervision. Any suggestions would be appreciated.

I’m in my late 50’s, only child, have grown kids of my own, divorced. I’ve been chronically ill for almost 16 months, bedridden 90% of my day. My father passed away suddenly in 2018.

My mother cannot handle the stress of my illness and the anxiety it causes her. She cut me out of her life, both physically and emotionally and we have not spoken or seen each other since November 2025. As a mother, I can’t comprehend how a parent could turn their back on a child, while being ill. I have begged for her love and affection and she has said she cannot be there for me emotionally or physically and is unable to see me. (We live 5 minutes from each other). I’m coming to terms with this reality. She was never a nurturing person and always put her needs first. I’m struggling with the reality of having to grieve the loss of one parent (they were divorced, she is remarried) through death and feeling like I’m grieving the loss of the other parent whom is very much alive and only a few minutes away. Why do we constantly seek that ‘miracle’ of the parent realizing that they could do better when deep down we know that that will never happen. I have never felt so alone or rejected as I do now while being ill. I have my amazing two children who have been by my side, but having a parent choosing to cut you out is so hard to come to terms with. I needed to vent. This platform has made it a bit easier to deal with everything but it really sneaks up on you, and hits you like a brick wall at times.

PS this is not a mother who can’t bear to see her child suffer or in pain situation, as she lacks empathy for most humans in general.

I am almost 60 years old, an only child and had a good relationship with my mother until last November 2025 when she decided she couldn’t deal with the stress and anxiety of the chronic illness that has become my life since January 2025.

She is married and even though she is older, and other than typical age related aches and pains, she is well ie no illnesses or conditions that keep her from doing the things she enjoys, walking, seeing friends, dining out, driving.

I was diagnosed with a chronic illness and have been mostly bedridden for over one year. I have been hospitalized 4 times in 5 months. My mother did not visit or call any of those times. The last time we spoke was on the phone in November at which time she yelled at me and hung up.

She then proceeded to go away for 6 months during the winter and has now returned for good. I reached out to her numerous times by email over the last few months and most of my emails were ignored. The last one was a couple of weeks ago wherein I expressed how hurt I am for her to completely disengage from my life, especially during what has been the most terrifying time of my life being ill every day and not knowing when or if I will get better.

I am also a mother of two loving children whom have stood by my side during this illness, and I know that I could never turn my back on either of them if they were suffering.

I am divorced and live alone and my daughter has been staying with me for the last few months following one of my hospitalizations.

How does one process these feelings and the reality of the situation. My mother and I were always close and shared everything. I never would have imagined our relationship would become no contact. This is something I never chose but then again neither was my illness. I have never received an explanation from her or apology for just stopping all communication except to say she hopes I feel better and she is unable to see me as she isn’t doing well physically or emotionally.

I truly empathize that as parents age and they become limited in mobility and mentally, I can’t condone just cutting a child out because their illness is too stressful. My heart is literally broken and I’m trying to come to terms with it.

Does anyone live here or know anything about this building, property management, insight??

Has anyone tried or been prescribed as part of Lyme disease treatment Oral Liquid Silver (up to 1 tsp 3 x/day) for its microbial properties?

I thought binders are supposed to make you feel better? I have been taking Biotoxin charcoal based binder for a month or so (started at half capsule mixed in water) and just increased to whole capsule a couple of days ago. Every time I increase, I feel worse ie my symptoms flare up (I have Lyme, bartonella, borrelia & MCAS) I tried Toxaprevent initially a couple of months ago and the flares were worse. I know everyone reacts differently, but aren’t binders supposed to help and actually make you feel better? I am not even at the stage where I can retry herbal or antibiotic treatment again and I’m working with my healthcare provider to get my body ready for treatment. ???

Has anyone taken Milk Thistle on its own for MCAS symptoms? The same question for NAC? Benefits?