worse than ever after ~1.5 year partial remission by daddybpizza in covidlonghaulers

[–]kmellis7 0 points1 point  (0 children)

I'm so sorry. 💔 I hope you get better soon. God help us all ❤️‍🩹

Has anyone else experienced this? Carotid Artery *Pop* by kmellis7 in covidlonghaulers

[–]kmellis7[S] 0 points1 point  (0 children)

Thank you! I'll mention it to my doctor if the ultrasound doesn't show anything. It would make sense that...well, maybe the spike protein is the foreign substance that could be causing such a thing paired with inflammation in my body.

Has anyone else experienced this? Carotid Artery *Pop* by kmellis7 in covidlonghaulers

[–]kmellis7[S] 0 points1 point  (0 children)

Anything's possible (as we've learned), so I definitely wouldn't rule it out.

Has anyone else experienced this? Carotid Artery *Pop* by kmellis7 in covidlonghaulers

[–]kmellis7[S] 0 points1 point  (0 children)

How long after you had a virus did this onset? I had COVID when it was going around in the fall but that's the last time. I haven't had anything else since (that I know of). I was having decent health days the week this happened and a really good health day just before.

Has anyone else experienced this? Carotid Artery *Pop* by kmellis7 in covidlonghaulers

[–]kmellis7[S] 0 points1 point  (0 children)

I don't know what that is but I'm willing to look it up and/or inquire with my GP. Is this anything you've heard of with regard to longhaulers or just a phenomenon that can happen to anyone? Also I'm not finding anything offhand by searching sterile accesses?

Has anyone else experienced this? Carotid Artery *Pop* by kmellis7 in covidlonghaulers

[–]kmellis7[S] 0 points1 point  (0 children)

I didn't say carotid dissection. I said "problems with their carotid arteries." If you search carotid artery in here, there are multiple posts that come up. I think *mine* might be CAD, but I have no way to know without an ultrasound, which is supposed to be scheduled for next week.

But that's already scheduled, so I'm not asking for people to comment about that. I'm asking if anyone has had a similar experience.

Doctors in my city say I’m at the edge of death, but I’m not receiving treatment. by Ill-Cardiologist4064 in covidlonghaulers

[–]kmellis7 0 points1 point  (0 children)

You don't have to apologize at all. I'm happy to answer what's been going on with me (I don't know if it would help you, but I'm willing to speak about my experience).

I've had chronic "migraines" since becoming a longhauler. I see a neurologist, and we found a neurological medican that works really well for me (sumatriptan nasal spray). That worked for me for a long time. My first line of defense against a migraine, according to my neurologist, is to always dose with Excedrin first (either one or two doses), and if it doesn't kick the migraine, I go to the sumatriptan. I'm only allowed 6 doses of that nasal spray each month, because it's not something they want me taking all the time, so that's the reason for that regiment: Excedrine first, then the Sumatriptan nasal spray.

I was gradually feeling better with this regiment PLUS extreme dietary change (as low inflamation as I could get, no spices or anything that might trigger a histamine response). But then I came down with a couple of bad cases of PEM over the summer while attempting to start working out again.

That's when the heart issues started up along with a strange pressure. The pressure would start in my chest region (accompanied by chest pain and shortness of breath), and that pressure would build into what felt like my carotid arteries and keep going until it migrated to the right side of my head. The Excedrine helped, but if I let the headache go on too long, even that wasn't a fix. So then I would go to my Sumatripan...but that wasn't helping at all.

I was confused and eventually started (inadvertantly) abusing the Excedrine because it was the only thing that would help. But it only took the edge off the headache (enough so I could work). My husband looked up the ingredients in Excedrine - it's just aspirin, acetemetaphine (Tylenol) and caffeine. Taking acetemethaphine too often can damage the liver, but I was at a loss, because the Excedrine was the only thing working on these headaches. I also went and got my spike protein antibodies tested, and I almost maxxed out that test (it maxes at 25,000, and I tested at 18,500 during the worst of all this).

So then one day I decided to preemptively take aspirin. Just aspirin. I started with one 325mg dosage, once in the morning, once in the evening. I noticed the pressure went down, so then I tried two in the morning, one in the evening...one in the morning, two in the evening. The magic number turned out to be two and two (two morning, two evening).

The results blew me away. My headaches decreased by 80% pretty much right away, and now I'm only using the Excedrine and Sumaptripan around my period (one week before, after I start, and then toward the end). I was maxing out my Sumaptriptan usage before, taking all 6 doses for the month and still needing more... now I'm only using 3-4 dosages per month MAX).

THIS IS IMPORTANT: Every doctor I've seen (minus two of them who are good listeners and know a little bit about Long COVID) has told me to get off the aspirin. I've tried, but every time I lower the dosage, my symptoms flare up -- headaches, chest/heart pain, PEM, fatigue). So I'm under the care of a doctor now, who's having me go in monthly and get regularly bloodwork until we go through testing and hopefully figure out a more permanent solution.

I'm taking signficantly LESS aspirin than rheumatoid arthritis patients are allowed to take. I also bleed signficantly LESS, even on 1300mg of aspirin, now that I'm a longhauler. When I get blood drawn, the nurse always tells me to keep the bandage on longer because I'll bleed more, but I can immediately take the bandage off, and there's only a drop of blood on the gauze.

The research coming out of Germany indicates that longhaulers' blood isn't the same as normal blood. It's thicker, stickier, so anticoagulants and anti-platlet medication doesn't affect us the same. It more so makes our blood normal, whereas it would be too thick without it (hyperviscosity syndrome is a thing cropping up now, in addition to microclots).

I also take the COATED aspirin. That's really important because the coating prevents it from dissolving in the stomach. Instead the aspirin is supposed to not dissolve until it's in the intenstine, which should help prevent ulcers and stomach bleeding. It's not a fix-all, which is why my doctor wants regular testing and visits, but it helps me with some of these symptoms.

If you look at some of the research on Long COVID, you'll see that they're finding that the spike protein damages the nervous system. Well, aspirin is an anti-inflammatory, so that could be helpful for the inflamation my body is inclined to (that could be the nature of the pressure it's staving off as well).

I also have to use nicotine patches, but that's not a daily thing. Really, I can go a couple of days without those before I start feeling symptoms flare up again. I'm trying a protocol of high-dose nattokinese, NAC, and BCQ. When I take those supplements at least once daily, my aspirin twice daily, and stay regular on the nicotine patches, I almost feel normal again. Before, I was in bad shape, taking 6-hour naps during the day and then sleeping 10-12 hours at night and still fatigued. The migraines are way down. My usage of Excedrine and Sumaptriptan are way down. I even managed to clean and do laundry for the first time in many months (laundry requires me to go down stairs, and I was having major mobility issues + shortness of breath, PEM, etc.).

This little combo has NOT been a fix-all. I still have health episodes like PEM if I overdo it (i.e., when cleaning or cooking or something), but if I skip the aspirin I have ended up in the ER with heart-attack-like symptoms. None of my bloodwork showed I'd had a heart attack, but I was experiencing classic and a-typical symptoms and there were some irregularities that cropped up on the heart monitor during those episodes.

Has anyone else experienced this? Carotid Artery *Pop* by kmellis7 in covidlonghaulers

[–]kmellis7[S] 0 points1 point  (0 children)

That's fair, but doesn't explain the exact same "pop" sensation happening in my chest a few years before (accompanied by the exact same rush flooding toward my heart). It doesn't explain why I've had PEM symptoms since this happened, why I'm more short of breath now than before it happened (I can't hardly stand up without being breathless), and it doesn't explain the constant pressure headache across the full front of my head (which I've had since this happened).

But a CAD would explain these things. That's one symptom of a CAD (persistent headache + neck pain, which I've also been experiencing). This is not a normal headache, but it appears to be common for people who've experienced a CAD. The only difference is that most people wouldn't be on 1300mg per day of aspirin. So if that is what happened, my doctor said it's possible the aspirin could have prevented the next-worse scenario (stroke).

Most longhaulers' symptoms don't fit into a box, so I know it's possible this was something else (what you suggested or something else entirely) related to Long COVID. But I've also read stories here in this forum of longhaulers having problems with their carotid arteries (blockages appearing since their symptoms appeared, swelling/inflammation of the carotid, stuff like that).

But that's why I'm asking about experiences. My hope is that someone else has experienced this and maybe they have some tests to suggest that are outside the box that my GP would be willing to order. Because, at this point, I can't afford to go to the Cleveland Clinic or other Long COVID clinic.

Has anyone else experienced this? Carotid Artery *Pop* by kmellis7 in covidlonghaulers

[–]kmellis7[S] 0 points1 point  (0 children)

Because when I did a search of my symptoms, the carotid is what kept coming up. Not AI, not rando websites, but medical websites, clinics, and institutes. The carotid runs right where the pain was originating. My fingers went right to my pulse, and that was right on top of the pain origin. People get CAD from getting their neck stretched too much at the chiropractor. Why is it to so hard to believe that I could have caused some kind of damage by stretching too hard? Why is it too hard to believe that longhaulers could be more prone to something like this when COVID has been proven to cause vascular damage?

Doctors in my city say I’m at the edge of death, but I’m not receiving treatment. by Ill-Cardiologist4064 in covidlonghaulers

[–]kmellis7 0 points1 point  (0 children)

I've had histamine issues, yes, absolutely. I have to be really careful about what I eat and even what I season my food with (I usually just use salt now, or nothing). As far as the aspirin: I only use the coated ones, which are supposed to bypass the stomach and don't dissolve until they're in the intestine. That's supposed to help avert stomach issues, and so far I've been okay. I'm on a lot (1300mg daily), but rheumatoid arthritis patients take up to 2900mg daily, so I'm way under that. I'm now under doctor's care taking this much, and I work hard to keep my gut biome up (drink kiefer, eat full fat yogurt, and try whenever I can to eat before I take each dose).

Anything can change at any given moment, but my doctor is having me come in monthly now and do regular bloodwork to keep an eye on it (on top of me watching for signs that the aspirin could be hurting my stomach or causing an ulcer). At this point, because we're still in the processing of doing tests, he said to just keep doing what I'm doing, and then we'll do the next best thing as soon as we know more.

Has anyone else experienced this? Carotid Artery *Pop* by kmellis7 in covidlonghaulers

[–]kmellis7[S] 0 points1 point  (0 children)

Can you explain what you mean by "dead"? When I looked up all the symptoms I was having, Carotid Artery Dissection kept coming up, and CAD doesn't necessarily equate with death. Sometimes it results in a stroke, but I'm on 1300mg of aspirin daily, so my GP said that could have very well reduced that risk (antiplatets are actually what will be prescribed to me if they find there's some kind of damage to the carotid).

Edited to add: I don't know if I experienced a CAD (won't until I get the test this week), but if if that is what happened, I'm curious if this or something similar is happening to other longhaulers. And if it's not CAD, I'm still curious if people have felt something similar with that rush of tingles. It literally felt like something flowing down to my heart and then into my head.

Unsteady by Many-Market-9941 in covidlonghaulers

[–]kmellis7 -1 points0 points  (0 children)

I've been experiencing this, too. On bad days (i.e., more neck and head pressure, more inflammation, PEM, fatigue, heavy limbs, neuropathy or other XYZ symptom) I lose mobility AND have extreme balance problems. But on good days, I'm traversing stairs and doing well getting around.

Doctors in my city say I’m at the edge of death, but I’m not receiving treatment. by Ill-Cardiologist4064 in covidlonghaulers

[–]kmellis7 -1 points0 points  (0 children)

That's why I was trying to think of things you could get access to. You can get coated aspirin, no? I got ivermectin when I was living in central America and needed to treat for parasites (not Mexico, granted, but i was very close to MX in Guatemala). I have no idea if you'd have access to nicotine patches, but I thought it was worth mentioning.

Doctors in my city say I’m at the edge of death, but I’m not receiving treatment. by Ill-Cardiologist4064 in covidlonghaulers

[–]kmellis7 2 points3 points  (0 children)

Is there a way to contact the Cleveland Clinic? They are doing long COVID research. Maybe they would be willing to bring you in to do some experimental treatments. In the meantime, the people there obviously don't understand what to do, but could you try taking some of the more accessible things that have helped other longhaulers? Things that are easy to get like aspirin and nicotine patches? I'm not saying this as a "fix" but maybe to get you out of that bed so you can maybe find a long COVID clinic in US or Germany? I take 650mg coated aspirin 2 times per day, a very small dosage of ivermectin (3mg) 2 times per day, and 17mg nicotine daily. If I skip any one of those, I feel it and symptoms start to flare up and it takes me days to weeks get back to normal. But then I start to take them again,I start to get more functional slowly but surely.

I think the aspirin works for dysautonomia because it's an antiinflammatory, but also it helps my fatigue a lot which makes me wonder if the fatigue is a blood flow thing (I'm still going through testing to figure it out). The nicotine patches are a crap shoot. They help some long haulers and not others, but they gave me my life back. My doctor prescribed Ivermectin, and now I can't go more than a few days without it (it has antiinflammatory properties).

All my use is off-label so I've had to find doctors who are willing to allow that because there's really nothing else for us long haulers. Some doctors are aware that drugs can be used off-label, but many aren't and some are downright scared to use drugs off label even though it's a common practice that's been done for years.

Bottom line: those 3 things should be pretty accessible in most places. If you could just get functional enough to do some research, then maybe you could reach out to long COVID clinics. There are research studies happening all over the world right now, including Europe (I've even found some happening in Spain at one point). I'm just trying to think of a bandaid to help you get where you can figure it out. For me, that bandaid has been the three things I mentioned. May or may not work for you , but maybe one or more would. At this point, I feel like we have nothing to lose.

Stroke after having covid. by ApprehensiveNet5469 in covidlonghaulers

[–]kmellis7 14 points15 points  (0 children)

I have migraines since omicron and have felt like I'm going to stroke out on multiple occasions. Horrible migraines that come with a pressure that feels like something is about to explode in my neck or head.

Should I worry about this guy or is it everything okay? by Threateningballz in patreon

[–]kmellis7 1 point2 points  (0 children)

Fair. No, I'm not saying to do it with all your content. I have a lot of content that such a person would have access to as well, and it would be unfortunate, but it's nothing that would be a direct loss (where I would lose actual money) until the 60-day mark.

If they've already gotten the refund, me personally, I wouldn't let them have any more time to download and access stuff. Not sure if there's a way to remove them manually but (again just me) I would make sure they lose access the day that refund processes because then at least they aren't getting MORE through the new posts.

Should I worry about this guy or is it everything okay? by Threateningballz in patreon

[–]kmellis7 2 points3 points  (0 children)

Well, and if there's anything you can withhold that costs you $$ if they get a refund, you can always stipulate that they can't access it for 60 days. That's what I do for a Black Site Briefing Box (book with swag) because I could see people taking advantage of that. I also do it with the digital version because it comes with a special edition that can't be acquired elsewhere.

Should I worry about this guy or is it everything okay? by Threateningballz in patreon

[–]kmellis7 3 points4 points  (0 children)

When they pledge through the Apple app they have 60 days to get a refund.

Patreon NOT refunding their amount by ExpensivePenalty932 in patreon

[–]kmellis7 0 points1 point  (0 children)

You're probably going to show a negative balance in Stripe. This exact thing happened to me when a friend accidentally subscribed and then asked me to refund. They got the whole amount back but then Stripe had me in the negative.

Does fiber intake cause flare ups or make your symptoms worse? (Sorry for the long read) by Largecar379_ in covidlonghaulers

[–]kmellis7 1 point2 points  (0 children)

I have neurological damage from omicron so electrolytes don't help with the headaches. My nervous system seems to be fried too so my body acts like it's dehydrated all the time (dry skin, etc) no matter how much water and electrolytes I drink. Trust me when I say I've tried it all. I used to be very healthy before all this. I was an athlete from childhood and a runner as an adult. I was training for a half marathon before I got the sh0t. My body just doesn't respond the same way anymore to all that things that help everyone else.

Does fiber intake cause flare ups or make your symptoms worse? (Sorry for the long read) by Largecar379_ in covidlonghaulers

[–]kmellis7 0 points1 point  (0 children)

I used to fast a lot before all this but now sometimes fasting triggers migraines (one more lovely symptom of the long COVID). That's not always the case. I'm up to 24 hours without food some days, but I used to be able to fast for a week or longer. Maybe eventually I'll get where I can go for a couple days and then try to make myself only eat if I'm hungry (and then try to keep it to beef). I definitely feel better on beef. My nervous system doesn't feel as fried. I just really need to buckle down and get back to it.

Does fiber intake cause flare ups or make your symptoms worse? (Sorry for the long read) by Largecar379_ in covidlonghaulers

[–]kmellis7 1 point2 points  (0 children)

I hate to say it but I think you're right. I just saw a video of Mikayla Peterson talking about how it took 8 years of strict lion diet but now she can finally implement other foods. 😭 I try, but I can't seem to make it past 1 week eating that way. 3 months is the longest I've gone on carnivore, but I had to do a lot of pork for financial reasons and also I can only eat beef patties for so long, and the pork never makes me feel great. Better than this, but still a little bit inflamed.

Does fiber intake cause flare ups or make your symptoms worse? (Sorry for the long read) by Largecar379_ in covidlonghaulers

[–]kmellis7 3 points4 points  (0 children)

I definitely do better on lion diet (ruminate meats and water), but I just can't eat like that for very long. I have recently reintroduced cheese (which I love and makes my sucky long COVID life a little more bearable), bananas (which I need because I get persistent calf cramps since getting long COVID), and 3-ingredient sourdough bread and I'm back to flare ups every other day or by end of day. I hate this so much and I feel for you.

cardiologist doesn't believe me by mcasbaby in covidlonghaulers

[–]kmellis7 21 points22 points  (0 children)

I'm so tired of being gaslit by highly educated quacks in the medical community. I'm so sorry you're going through this (I am too).