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One Step Forward and I'm Super Sick by spoonies

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· @spoonies ·
$1.11
One Step Forward and I'm Super Sick
I'm really sick. Before I get into it I want to state very clearly I do not believe this has anything to do with Rapamycin. If anything I think rapamycin's anti fungal properties would help in this situation.

I am a feverish and out of whack so please bear with me. It's very hard for me to communicate coherent thoughts right now.

A few weeks ago we had a flooding situation in our new house. Long story short we had to clean out some pipes but there was significant damage to the floors. The floors were already on our list to get replaced but we planned to do this in the spring.  The flooding warped the floor so we decided to just get it fixed now.

Fast forward to the day before and during Thanksgiving. the contractor doing the floor discovered that there is black mold everywhere. I mean every where.

He worked on it on Thanksgiving while we were at my father in law's but the more tiles he removed the more mold was found. It looks like one of those horror movies where back ooze suddenly appears.

We thought the worst of it was killed off and of course we had ventilation going with industrial blowers etc.  However the mold issue was even worse than expected.

Thanksgiving evening I started to feel sick. Cold/allergy type of sick. I even said to my husband I thought I may be getting a sinus infection. It was mild at this point but I've had enough sinus issues to know when things aren't right.

We closed off parts of the house the contrcator was working /cleaning the mold but the main intake vent was not walled off and the black mold dust was basically sprayed right into the bedroom (we have a heat pump so it was directly being pumped into the bedroom). This has since been resolved but we were still exposed to it and that damn dust was everywhere.

One of the reasons we bought the house when we did is because the landlord at the house we were renting refused to fix the massive black and like 100+ species of mold(not an exaggeration we had it tested) issues and we as the tenants had  to pay for mold remediation (mold was coming from the foundation and a faulty installed shower- not tenant's responsibility) . The mold was making both of is very sick (for month really) we ended up staying in a hotel for a few weeks.

I got sick enough at that time that i needed antibiotics special cough syrup and steroid inhalers.  I was also offered prednisone but I chose to not take it because of the side effects . The inhaler helped a lot.  

Now I am sick in the same way. I do not have a primary care doctor anymore and can't risk an urgent care center with covid levels right now. My husband is in immune suppressants and I myself have immune dysfunction. Doctors don't even wear masks anymore.

I'm also too sick to leave the house which gives me telehealth as an option. I can probably get the anti biotics and steroid inhaler refill but for some fucked up reason the urgent care centers around here  that do telehehalth specifically state they won't rx promethazine (anti histamine cough syrup) or narcotics. Seriously no promethizne. WTF? I'm not even talking about the version with codeine. Our system is so broken.

I have asthma and a very wheezy cough that delsym isn't making a dent in. I have a couple emergency doses of the good cough syrup left over but maybe like 3 doses total. My wheezing is s bad.

I will likely try the telehealth anyway for the anti biotics but this wheezy cough and sore throat that feels like I am swallowing knives is kinda wrecking me.

Oh and my 02 level went to 90 but is lingering around 94. Same thing happened last time I was sick like this.I have supplemental oxygen cans here I am using. My heart is doing funky things too. I have a pulse ox with heart graph (pleth graph or something) and it is showing some weird shit. Usually my heart rate is high but typical wave patterns. Right now not so much Lots of flatlines and other erratic stuff. This is most likely do to the physiological stress but still a bit worrisome.

So anyway that's how I'm doing.  I'm absolutely miserable and kind of a mess. I wanted to blog more about the positive effects of the rapmycin but that will have to wait.  Still feeling less weight down and less muscle stiffness yay. However my joint pain has increased slightly.

It's gonna be a rough couple of weeks.
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vote details (265)
@biyimi ·
$0.28
I am so sorry about your condition.
I will like to ask, is there any standard hospital that you can go for maximum treatment even though it might be expensive but health is always wealth 
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@spoonies ·
For this acute illness yes there are treatments and I am already on anti biotics. But for my conditions in general, there really aren't any options for me right now.


Not one I can get to. There are a few in the country but I can't travel to them as I am not well enough.  I can only sit or stand upright for a few minutes or I faint. Also exertion of any kind causes major crashes and worsening of symptoms.  

If money alone could solve my problem of not getting care the issue would have been already solved. I have excellent health insurance (well as good as insurance can get) and have gone to many specialists. They all just refer me to someone else with no treatments. I call it specialist ping-pong.

I also would need to find a primary care doctor local to me that would continue treatments/listen to the experts. There are many treatments and medications that exist that could help me but doctors refuse.  I have looked and spent a ridiculous amount of time, money, and energy I don't have trying to find one.

I don't have rare conditions either. Just  conditions that have been neglected and ignored -like most conditions that primarily effect women. Medical misogyny is a huge factor in all of this.

I am on a waiting list for a clinic here but  I have to wait  two more years to be seen as there are multi- year waiting lists. I believe mid-late 2025 is when I can be seen-but I haven't even gotten an appointment confirmation. I am basically on a waiting list for the waiting list.

It really is an unimaginable situation but this is the reality for not just me but millions of people like me. My story is typical-not unique. We all have the same story. The medical system does not care about us and we are on our own. 

That's why I created this account so I can at least raise some funds for research that may in the future lead to treatments. 
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@dhedge ·
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@fc-curation ·
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@dhedge ·
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@freecompliments ·
$0.29
This absolutely sucks! I'm so sorry you got sick again so shortly after recovering.

I've been reading about rapamycin recently, and it's quite remarkable what positive effects it could have! However, being an immunosuppressant, it does run the risk of increased infections of various kinds. This particular sickness could be a coincidence, but if you do notice that you're catching infections more frequently, then it's important to keep this very significant effect in mind.

As far as promethazine, it can cause QT prolongation (essentially, a certain portion of the heartbeat gets extended), and when this happens, it increase the chance of an arrhythmia, which increases the risk of other very dangerous adverse outcomes (among the scariest including strokes and heart attacks). For this reason, this medication requires frequent EKGs, hence it's not something that's typically prescribed OTC (@thebighigg that may answer your question as well). There are some alternatives that should be safer.

All this aside, I certainly hope that you feel better soon, that this illness was nothing more than a coincidence, and that you continue getting progressively stronger over time!
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vote details (3)
@spoonies ·
$0.02
Thanks for your comments.  Yes Rapamycin can suppress the immune system . This particular illness is 100% the black mold exposure and this has happened before. I am very allergic to mold/mildew and I am also susceptible to getting really sick from mold-not everyone is. 

I am absolutely going to be careful and see if it does make me more susceptible to infections that will be tricky since I already have a faulty immune system and get sick easily. I have both autoimmunity and immune deficiencies (very common in ME/CFS especially those with POTS as well). I have heard other folks with similar/same  conditions as mine actually get sick less often while taking it, but we shall see. 

I will however wait until the infection clears before taking the second dose. I am on anti biotics for 7 days as well as a steroid inhaler and will resume the rapamycin after that.

I am also getting regular bloodwork while taking rapamycin which will look at platlets and other stuff. My platlets are high and I am hoping the medicine can bring that down a bit.
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@freecompliments ·
$0.02
Ugh, I also have some allergies to mold (although mild), and it's a pain in the butt. My ancient apartment building is full of it.

By the way, thrombocytosis can be a reaction to illnesses... I've definitely seen it a few times. It would be interesting if rapamycin ultimately ends up normalizing this, and whether that would actually be clinically beneficial.
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@stekene ·
$0.26
Ouch, that's really an awful situation :(

I really hope tele health can help you out properly!
Is it already a common thing in your area / the states?

In Belgium, I don't think we already use telehealth on a big scale, as far as I know though.. 
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@spoonies ·
Telehealth is pretty big here. It is limited though. It is a lot easier for people with chronic illnesses in general to use telehealth. Better than waiting in the doctor's office and fainting for being upright too long .A lot of my fainting episodes happen at doctor's offices because they don't listen to me when I tell them if I am upright too long I faint. They are also almost always 30-45 minutes late no matter which doctor you go to. Telehealth is is  much easier.

I was able ot get anti -biotics yesterday through a family friend who is also a nurse practitioner. I am grateful for that. One I am better and things are settled I will be looking for a new primary care doctor. It is so hard to get any doctor to take my chronic health issues seriously.
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@stekene ·
Great to hear that telehealth is already quite well integrated in the healthcare system.

Guess we're definitely running behind even though I think personally that it has plenty of advantages!

Great to hear that you managed to get your hands on needed antibiotics! Atleast some positive news after yesterday's! I hope they will now start working rather soon than late! 
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@thebighigg ·
Geez, I'm sorry to hear that. If your O2 goes less than 90 your only real option is the ER which really does suck. Best just to take it easy and stay away from the lovely black mold garden. Promethazine should be given out like candy, it's not a controlled substance, honestly it should be OTC by now. Use telehealth to get what you need for now, but go to the ER if it's worsening (as much fun as ER's are...)
!DHEDGE
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vote details (2)
@spoonies ·
It's dipped to 87  a few times but recovered after a minute. But yeah not good. I do have some oxygen cans and those help. My 02 really drops if I move at all , but laying  down it's mid 90's. Gonna use the 02 can before and after I get up for anything.  I don't move around a lot anyway so I guess that's good.
Also gonna eat the shit out of the delicious vegan ramen soup we have here :)

Black Mold Garden sounds like a dark fairy novel .

How are you doing. Is the foot any better?
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@thebighigg ·
$0.27
If it persists below ninety you don't have much choice, hopefully with the O2 it will stay up. Enjoy that ramen!

Inflammation is better but I still need Ibuprofen a couple times a day to keep it down still. At least I can walk!
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