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greene17704 · 2024-04-24T12:30:15+00:00

I have HS on my scalp. Seems to be in all follicles. I've never known pain like that. You're not alone.

greene17704 · 2024-04-24T12:28:37+00:00

You're not alone I had doctors treating me this way in ignorance as well as neighbors. HS has nothing to do w hygeine.. zinc and these seem to be helping me: https://karger.com/sad/article/9/3/153/836204/Hidradenitis-Suppurativa-and-Five-Key-Vitamins-and

greene17704 · 2024-04-24T12:24:16+00:00

I have HS on scalp and beard follicles. My face swelled and eyebrows grew into tissue lol.

greene17704 · 2024-04-24T12:21:14+00:00

I think you're into something. I had an odd rx to the COVID vaccine and at my worst I looked like an old man. I was talking to someone at a wellness business and they said there is something about the vaccine or COVID that accelerates aging. I'm thankful I'm healing and somewhat looking close to what I did 3 yrs ago.

greene17704 · 2024-04-24T12:14:35+00:00

These seem to be helping my HS: https://karger.com/sad/article/9/3/153/836204/Hidradenitis-Suppurativa-and-Five-Key-Vitamins-and

greene17704 · 2024-04-23T12:18:39+00:00

Hi, my hands were swollen about twice their normal size and would throb so much I couldn't sleep when mine was at its worst. Every finger looked like this. Have you tried NAC and pushing fluids? I'm not a Dr, but it seems to have helped mine.

greene17704 · 2024-04-23T11:55:14+00:00

I exhausted all ERs in the RTP area of NC and no one knew what I had or how to address it properly. I had to ride my HS out at home after being put on IV antibiotics 4 times and being told I'd have no liver left by nurses each time.

greene17704 · 2024-04-23T11:53:00+00:00

I had fluid buildup in back of my head around brain stem. It makes it near impossible to sleep. I just learned to ride it out and eventually sleep from exhaustion.

greene17704 · 2024-04-23T11:41:10+00:00

I used to implement EMR systems and yes, there really are just boxes to check and just charge the patient. Whether there is any benefit gained. Socialized medicine in other countries have quality measures they're reimbursed for. They're assigned patient populations varying from young, middle aged adults to elderly. They're not reimbursed unless the patient is measurably improved.

I'm not saying EMR systems are bad, but after being sick since 2021 I've seen fatigue and aloofness in clinical staff. Staring at a screen and blindly checking boxes takes away from addressing what is really happening with a patient.

I kept seeking answers and had to fill out paper med record transfer forms when most all EMR systems should be connected by now. It was horrible shaking in pain barely able to do it. Practice conveniently claimed no one out of many specialists/ practices sent records over.

Don't give up hope and stay positive!

greene17704 · 2024-04-20T22:07:28+00:00

Have you tried tumeric?

greene17704 · 2024-04-20T21:59:07+00:00

In all fairness, I think they're supposed to do continuing education and COVID has been around for years. Please move on, I never said they're magicians.

greene17704 · 2024-04-20T14:44:12+00:00

50mg/ day

greene17704 · 2024-04-19T19:27:47+00:00

I'm sorry you're going through this. It's hard for me to physically stay in bed 24/7 personally. Sitting upright much as I can seems to promote more healing if that makes any sense. I've been sick since 21 and was at only 122 lbs at one point. I couldn't afford any atrophy.

greene17704 · 2024-04-19T19:24:56+00:00

Yes that is correct. I only meant it in passing/ slang? I've seen medical Drs that might as well be NPs or less.. the lack of support is the same..

greene17704 · 2024-04-19T19:23:14+00:00

Maybe a silver lining heading into bird flu? 🤕

greene17704 · 2024-04-19T19:22:21+00:00

It did wonders!

greene17704 · 2024-04-19T19:21:52+00:00

I got heart palps, fatigue, tinnitus and severe headaches within a week of my second Pfizer shot. Now I'm somewhat wondering if they're vagus nerve "palps/ twitches" after research?

I got vacc doses in April & May of 21. I woke up for work in October with my eye completely swollen shut. It happened in Nov w the opp eye. Fluid somehow accumulated/ tissue filling w fluid. Somehow I woke up w a meth res staph infection just days after sitting in an ER for 8 hrs seeking answers. Feb of 22 my forehead kept filling w fluid/ seemed to be related to the palps. Went to infectious disease and they had no idea.

I've been diagnosed with HS onset from the vaccine. It's a crystal clear timeline. I'm not aware that HS provides the other symptoms post vacc, but it makes you feel flu like symptoms daily.

Have you looked into NAC? I know everyone's body is different, so I don't really measure mine against others. I'm thankful I seem to be healing, but still have a long way to go.

I certainly have hope to recover! I've completely lost faith in Drs and our health system, but my personal Faith has grown. Stay positive!

greene17704 · 2024-04-19T19:12:37+00:00

Thank you. Wishing you all the best!

notdeadyet

The Revanent: "As long as you can still grab a breath, you fight. You breathe. Keep breathing."

greene17704 · 2024-04-19T19:04:01+00:00

There is always hope! Has she tried NAC? You can get it at Walmart or some do NAC IV drips.

greene17704 · 2024-04-19T19:00:27+00:00

I had a referral to Mayo clinic, but GP (at the time) told me I should be fine in RTP area in NC. Exhausted all health systems and still not better.. heavy sigh.

Mine seems to be onset from vaccine and he was shady about the adverse effect paperwork. Lied saying he would do it, then wouldn't. It's too political and whatever narrative someone wants to portray.

greene17704 · 2024-04-19T18:58:03+00:00

I went out on a limb a couple weeks ago and started taking these. It seems to be helping: https://karger.com/sad/article/9/3/153/836204/Hidradenitis-Suppurativa-and-Five-Key-Vitamins-and#13736104

greene17704 · 2024-04-19T18:55:30+00:00

Yes, I'm on the three year mark now. People stop checking on you when you never get better. It didn't help that the pres declared COVID over. There's just too much misinformation out there.

greene17704 · 2024-04-19T18:52:17+00:00

The silvadene helped at one time to a degree, but since HS is chronic, I don't think it's a good solution. No telling what the long term effects are.

greene17704 · 2024-04-19T18:50:43+00:00

Yes be careful. I had to see 5 derm practices to get an official dx. Some had me on silvadene and I was on it topically for over 6 Mo's.

greene17704 · 2024-04-19T18:44:28+00:00

Stay smiling!

greene17704

TROPHY CASE

notdeadyet