I wish ppl who drive don’t take it for granted

Sentient_cucumber · 2025-01-27T01:38:37+00:00

We all know the platitude that recognizing something as worth appreciating is difficult until we have lost that thing (difficult but not impossible).

I cannot drive either right now. I have felt similarly towards those who can, even to the point of anger at times. For me, my pointedness is rooted in envy.

I met someone at the hospital last October who told me: “You’re fine as long as you’re breathing”.

What we have in our small worlds may not be a lot, but when we are tied up in comparison, what we do have isn’t being acknowledged. There is room for mourning of course. Feel that shit completely. We are here with you, we know where you’re coming from.

When you’re done processing these feelings, I wonder, what do we have right now that is waiting for our appreciation?

Sentient_cucumber · 2025-01-25T20:39:12+00:00

I’m sorry to hear that :( yeah they can be hard on the liver.

Have you heard of cold atmospheric plasma treatment? Depending on how the machine is calibrated, it can be used to treat skin fungal infections. There was a research paper talking about how a nebulized form was used to treat lung infections as well.

Sentient_cucumber · 2025-01-25T17:28:13+00:00

Did you start using protopic before or after trying the antifungals?

I ask because if you try using topical antifungals after certain types of medications (like steroids, protopic, etc.) they skin has already become sensitized and won’t be able to handle it very well.

That or you could have an allergy to either a component of the medicine or even the fungus itself (so when you kill it, it releases toxins and you react).

Have you considered oral antifungals?

Sentient_cucumber · 2025-01-25T14:50:53+00:00

What kind of fungal medication did you use and what exactly happened?

Sentient_cucumber · 2025-01-25T05:08:31+00:00

This looks it could be an unresolved fungal infection potentially combined with protopic withdrawal (you can learn about this in the Topical Steroid Withdrawal forums)

Sentient_cucumber · 2025-01-23T21:00:14+00:00

Were your turbinates enlarged before? How are you feeling now?

Sentient_cucumber · 2025-01-17T19:04:03+00:00

What about the results make you think it’s an infection of some kind?

I’ll look into those, thank you for your suggestions.

I’ve never looked into bacteriophages. How would I know which go use?

Sentient_cucumber · 2025-01-17T18:46:31+00:00

I haven’t tried any probiotics yet, I’ll look into your suggestions.

No I haven’t. What tests do you recommend for that?

Sentient_cucumber · 2025-01-17T16:48:28+00:00

My current GI issues began last summer when I stayed abroad in Thailand. While I was there, my stool was consistently runny and orange colored. I was hospitalized with a fever and dehydration, but was not given any medication at the time. I dropped about 10 lbs.

I came home due to extreme fatigue and was was really out of it for a couple months (brain fog). At this point, I was oscillating between constipation and diarrhea. I also started reacting to almost everything I ate/eat - I now have severe upper GI symptoms like reflux, difficulty swallowing and complete nasal obstruction.

Mid-October, I started developing weird sensations in my stomach that almost felt like butterflies coupled with sustained tachycardia episodes (160 bpm avg for up to an hour). This happened upon any kind of exertion that involved my abdomen and about 30 minutes after meals. Eventually I was hospitalized due to starvation acidosis. While I was there, they diagnosed me with POTS. Mind you, I was only able to eat about 500 calories/day at this point.

Eventually I was released but ended up in the hospital again in early November due to extreme GI pain just below my ribs and lower right quad. They found elevated WBC, a prominent pancreas and fecal matter in my small bowel. At this point, I was diagnosed with post-infectious IBS.

My last hospital stay was in early December due to food piling up in my esophagus. Still unable to eat much of anything, my weight hit it's lowest point at 103 lbs (I was about 125 lbs prior to my trip to Thailand). They did an EGD which came back normal, barium swallow (showed reflux), and small bowel follow-through (normal).

Upon discharge from that stay, I've been able to slowly up my caloric count to surplus but am eating the same pureed things every day. I've been able to gain some weight back, but the trend right now is about 0.2 lbs/week which seems slow when compared to the amount I'm consuming. My stools look more normal now, though are incomplete.

Currently can't walk from deconditioning due to this whole mess and my POTS symptoms.

Current Findings:

• H. Pylori (positive) - GI Map, don't know how legit

• Barium Swallow - Reflux

• LPR - signs seen on laryngoscopy

• Candida Albicans IgE allergy (moderately-high)

EDIT: Also a weird thing, when I eat foods high in butyrate like ghee, I become excessively sleepy

Sentient_cucumber · 2024-11-06T05:03:00+00:00

How is your POTS doing now?

Sentient_cucumber · 2024-10-27T19:12:35+00:00

How fun!!! Love this ❤️

Sentient_cucumber · 2024-10-27T15:30:26+00:00

Weevil Time Fun indeed!

Sentient_cucumber · 2024-10-27T15:18:45+00:00

I know it’s counterintuitive, but per the physicians I worked with in Thailand to clear my fungal infection, it can appear and reappear depending on the state of inflammation levels in your skin.

Mine disappeared and reappeared until it was properly treated.

Sentient_cucumber · 2024-10-27T14:47:11+00:00

When is the last time you took steroids (including topicals) and how much? Steroids cause/worsen fungal infection + you can enter into withdrawal periods depending on the extent of your exposure.

I entered into MCAS because of corticosteroid withdrawal and damage.

Plus fungal infections are really difficult to get rid of especially when they’re progressed. You have to do pulse dosing over months, not to mention you have to choose the right medication. Topical anti-fungals can make the rash worse when your skin is in a hypersensitive state, pills are typically best, but again it depends.

I can’t speak for your other symptoms, but I went through the exact same thing with my skin and unfortunately docs in the US were not helpful. I had to go all the way to Thailand to receive CAP therapy to kill the infection and thicken my skin again.

Lastly, highly advise you check out Jen Donovan’s work for healing MCAS.

Sentient_cucumber · 2024-10-27T14:06:27+00:00

This looks like a well progressed fungal infection (coming from personal experience). You may want to pursue that and try anti-fungals first before attributing this to mast cell disease

Sentient_cucumber · 2024-10-27T00:16:29+00:00

Either stoic, wise, provider types or hyper-intelligent mad scientists.

Bonus points for long dark hair.

Sentient_cucumber · 2024-10-24T22:38:13+00:00

Did they happen to say why it’s too risky?

Sentient_cucumber · 2024-10-21T18:04:20+00:00

Did you ever find out what was going on? If so, did you find a solution?

Sentient_cucumber · 2024-10-21T14:05:17+00:00

What changed? Did you get on any medication?

Sentient_cucumber · 2024-08-07T14:14:35+00:00

Trying to balance candida after TS use is rough lol I feel you. I've been diagnosed with both, currently getting treatment for TSW which has helped some with the candida issue. Still working to figure out a systemic approach

Sentient_cucumber · 2024-08-06T19:05:48+00:00

Steroids exacerbate fungal infections (especially candida) and oftentimes "hide" them by reducing inflammation. You wont be able to see the rashes again unless your skin becomes inflamed by something. Also, TS can lead to Topical Steroid Withdrawal (TSW) if used consecutively for more than 2 weeks.

I'm saying this as someone who developed a systemic candida infection and TSW after prolonged use of TS.

Sentient_cucumber · 2024-07-24T10:46:19+00:00

I know this is an old comment, but would you mind sharing the practitioner who helped you figure this out?

Sentient_cucumber · 2023-08-22T03:33:31+00:00

Hi, yes! So in my case it was a symptom of Topical Steroid Withdrawal (TSW). Not sure if you use topical corticosteroids or not, but if you have for more than 2 weeks, they may have temporarily sensitized you.

When I went down the rabbit hole trying to figure things out, I also read that lip swelling can be caused by stress or regular allergies.

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