Regeneron

[Matryoshka]

6 minutes ago, Dmmetler said:

Spikevax sounds to me like you're taking your dog in for his Rabies shot...

Or you'll be innoculated against hot vampires?

[PeterPan]

9 hours ago, Halftime Hope said:

I've noticed that it's not at all unusual for the most brilliant people, the ones who are most successful, to be renaissance people, people who can master several disciplines and have multi-tracked business and professional lives. It's a cultural thing, I believe. Here in the US we tend to single-track people and they do one thing, perhaps with a hobby or passion project on the side. It's a bit of a shame, really. We could be so much more. 

Oh I don't know. We had a guy work for us in construction who is now a brain surgeon. And another friend with a phd who did construction too. People are sometimes more multi-faceted than we realize. Not completely what you mean (owning and running concurrently), but still. 

 

9 hours ago, Halftime Hope said:

Dr Mobeen is also a caring, level-headed, gentle guy who connects with and has gotten to know members of his audience.  If you care: he is very pro-vax, but he's had to treat his wife for quite protracted post-J&J complications. 

This is sad! 😞  

1 hour ago, TCB said:

Spikevax!

Love it!! 

Fwiw, every time I see "comirnaty" (which is a horrible name) it makes me think of a cormorant (big black bird). Seems like a horrible picture. 

[PeterPan]

10 hours ago, Halftime Hope said:

The FDA could have approved the current Pfizer vaxxes and been done with it. 

Honestly couldn't we find another horse? Like seriously, if it's probably in reality a nothing (a labeling thing), then why turn it into something more? Everyone knows they'll find another way to shield from liability. (agreeing with you on the cynicism that that could be a goal, just saying they could find another way and that this doesn't sound like a very effective way or something that would hold up in front of a jury)

Well @Pen, I'm back. I'm still having breakthrough head pain (even with doses of ibuprofen) and vertigo. The meclizine helps, but it's still there. I suspect that it's inflaming the parts of my head/brain that were not yet healed. Like if I had waited and done another 20 HBOT, less of my head would have been weak and waiting to be inflamed. It doesn't feel like it's inflaming the parts that were already healed/improved, if that makes sense. We can tell because literally each HBOT session another spot on my head would stop hurting. So the spots that already hurt hurt more and the vertigo I was already having occasionally is more. 

I'm booked for HBOT in a week, which should help take it down if the inflammation doesn't go down on its own. They were saying to give it at least 3 days, but honestly I'm not sure there's data on that. I thought waiting a week was conservative. If it becomes unacceptable, I'll probably try to go in closer to the 3-4 mark.

So basically, it feels like one of my concussions is back, sigh. Vertigo, headaches, right on the edge of nausea (I'm sipping kefir) and that's what is breaking through the meclizine 25mg every 6 hours. If it gets worse (more than what I can chillax through), I'll call the doctor's office and ask about something stronger. Then 25mg 4X/day is the OTC dose. I don't know if it's ok to do a stronger dose. 

My arms feel a little funny, sort of disconnected from me, like flippers. And my head feels like it's wobbling while I sit here, even though I know it can't be as the screen is not moving.

So mild, not intolerable. I'm thinking at this point I would be very wise to get as much of my head finished as possible (30 more HBOT?) before taking that 2nd dose. So my theory on doing the 8-12 weeks of spacing is going to work out better with that. If I did the 4 weeks and there was more inflammation with the 2nd dose (common) on top of this, I'd be in a really hot mess. The current level I feel pretty comfortable we can get down with HBOT without a problem. 

[Matryoshka]

11 minutes ago, PeterPan said:

Fwiw, every time I see "comirnaty" (which is a horrible name) it makes me think of a cormorant (big black bird). Seems like a horrible picture. 

It's an absolutely awful name.  It's practically unpronouncable, and yeah, makes you think of nasty cormorant.  Or someone saying 'come here nasty' while drunk. At best.

And I think I read that they came up with this name ages ago and already had it trademarked, because they were so pleased with their cleverness.  How did they all think this sounded good?  

Spikevax isn't that great, but easy to pronounce, I can remember it, and is vaguely humorous.

[Wheres Toto]

There are rules regarding names for brand drugs that have gotten more convoluted in the past decade or so.   The names have to be considerably different than any other name that has ever been used - brand or generic - not just in how its pronounced but, even more importantly, how it is written in doctor handwriting.  There are a couple drugs out right now with very different indications where the names are close enough to cause confusion.   They can't just look at US approved drugs, they have to look worldwide.    Trial names are often just a string of numbers that would be confusing to remember and simple errors can cause huge problems.   

I worked for the company that developed a very big medication currently available.  It was called D2E7 at the time.  Does anyone here know what drug that is without looking it up?  Someone may, but I would bet even most people taking it have no idea.    And what are the odds of people knowing the distinction between D2E7 and D2E5 or B2E3?

I have to ask my daughter what the name of her adhd medication is and I've worked in pharmaceuticals and her dad is a pharmaceutical chemist. 

The process for getting a brand name approved can be as important as the process for getting the drug formulation approved.  

I did not see where the brand formulation for the vaccine is any different than the EUA formulation BUT it's also not uncommon for their to be SLIGHT (very slight) variations in the excipients/inactive ingredients/fillers/etc for a medication between the trial version and the final approved version.   

[Pen]

1 hour ago, PeterPan said:

Honestly couldn't we find another horse? Like seriously, if it's probably in reality a nothing (a labeling thing), then why turn it into something more? Everyone knows they'll find another way to shield from liability. (agreeing with you on the cynicism that that could be a goal, just saying they could find another way and that this doesn't sound like a very effective way or something that would hold up in front of a jury)

Well @Pen, I'm back. I'm still having breakthrough head pain (even with doses of ibuprofen) and vertigo. The meclizine helps, but it's still there. I suspect that it's inflaming the parts of my head/brain that were not yet healed. Like if I had waited and done another 20 HBOT, less of my head would have been weak and waiting to be inflamed. It doesn't feel like it's inflaming the parts that were already healed/improved, if that makes sense. We can tell because literally each HBOT session another spot on my head would stop hurting. So the spots that already hurt hurt more and the vertigo I was already having occasionally is more. 

I'm booked for HBOT in a week, which should help take it down if the inflammation doesn't go down on its own. They were saying to give it at least 3 days, but honestly I'm not sure there's data on that. I thought waiting a week was conservative. If it becomes unacceptable, I'll probably try to go in closer to the 3-4 mark.

So basically, it feels like one of my concussions is back, sigh. Vertigo, headaches, right on the edge of nausea (I'm sipping kefir) and that's what is breaking through the meclizine 25mg every 6 hours. If it gets worse (more than what I can chillax through), I'll call the doctor's office and ask about something stronger. Then 25mg 4X/day is the OTC dose. I don't know if it's ok to do a stronger dose. 

My arms feel a little funny, sort of disconnected from me, like flippers. And my head feels like it's wobbling while I sit here, even though I know it can't be as the screen is not moving.

So mild, not intolerable. I'm thinking at this point I would be very wise to get as much of my head finished as possible (30 more HBOT?) before taking that 2nd dose. So my theory on doing the 8-12 weeks of spacing is going to work out better with that. If I did the 4 weeks and there was more inflammation with the 2nd dose (common) on top of this, I'd be in a really hot mess. The current level I feel pretty comfortable we can get down with HBOT without a problem. 

Wish you could have been a no bad effects at all person - but at least sounds like you’re managing! Hang in there!

Have heard of not only falls, but also car crashes following vax and brain involvement so that I expect someone will be driving for you for safety 

More HBOT sessions sounds like a promising plan to me - no idea in timing . If it helps I’d think as much as is helpful would be good! 

there probably is not data on timing 

I’d probably be inclined towards sooner (3 days if that’s what they said) rather than later - can you think of harm for hbot at 3 days rather than a week? I am sure you know much more about HBOT both personal reactions and reading pub med etc  than I do. 

to me I’d think getting your medical team weighing in as soon as possible if they are willing to help would be a good idea. Neither CV19 nor vax reactions IMO seem like the present prevailing idea of waiting to be a hot mess is a good idea. 
 

I wonder if HBOT would  help others for other post vax problems or long term Covid too?  ( @Plum ? Have you looked at HBOT? I think there have been a few small trials with it posdibly relevant to your dh? )

Speculatively, just surmise,  it seems like achieving excellent oxygen perfusion via HBOT could help a lot of people with oxygen perfusion CV type issues  and probably much more safely than intubation.    again just my thinking out loud as it were: I wonder what result would have been if hospitals early on had asked for lots of HBOT units for early HBOT treatment rather than lots of ventilators for late stage ventilator treatment

[PeterPan]

1 hour ago, Pen said:

can you think of harm for hbot at 3 days rather than a week?

They just had some vague theory about oxygen killing bacteria. I didn't want to undercut the process of the immune system actually fighting this thing.

1 hour ago, Pen said:

Have heard of not only falls, but also car crashes following vax and brain

Thanks, that's sorta what I thought. Didn't go anywhere this morning and will lay low till I'm sure.

1 hour ago, Pen said:

I wonder if HBOT would  help others for other post vax problems or long term Covid too?

Of course. 😉  The whole point of HBOT is to reduce inflammation. I met a man at the clinic doing HBOT for long covid and saw him turn around over a couple weeks. I don't think he even did that much, maybe 20 sessions. And his long covid was pretty severe, landing him the ER with heart issues. 

Actually that's the only reason I'm not booked this week is they were so FULL! But I'll probably text and try to snag a slot.

[PeterPan]

1 hour ago, Pen said:

again just my thinking out loud as it were: I wonder what result would have been if hospitals early on had asked for lots of HBOT units for early HBOT treatment rather than lots of ventilators for late stage ventilator treatment

It's more complicated than that. HBOT clinics won't let you in if you test positive. You'd then have contaminated units that they're trying to clean. And when you're doing HBOT, your blood pressure goes up and things get stressed. They're pretty careful about who they put in. 

Hospitals around here do have HBOT units, but there's a lot of gate keeping, limitations on who they'll treat, blah blah. Even things that have evidence for HBOT (as in insurance would cover it) are hard to get treated by a hospital and you're talking more novel ideas/applications.

 

[PeterPan]

Well @Halftime Hope I finally know why the death rates went up after covid vaccinations. People were killing people from high methyl levels from taking so much ibuprofen. 😄  

I'm only partly joking. I've been taking so much ibuprofen and meclizine (which is working btw) that I'm really am grumpy. I just took a stiff dose of niacin to pull it down. My tinnitus also ramped up dramatically as the brain inflammation kicked in, enough that I was really concerned, but it has gone down to *close* to a normal level. Like it might be 30-50% higher than normal but it's not at 300% like it was for a while. That was really bad. However I'm dramatically more sound sensitive right now.

So I would say we're keeping the sound sensitivity to a dull roar. In fact, it's kind of interesting data, because my sound sensitivity right now is at the level it was years ago. You don't really notice the *absence* of things, so I hadn't realized how much HBOT had improved it. I'm definitely looking forward to some HBOT to pull this inflammation back down and I'll try to get in sooner, rather than later, as @Pen suggested.

[Pen]

8 minutes ago, PeterPan said:

Well @Halftime Hope I finally know why the death rates went up after covid vaccinations. People were killing people from high methyl levels from taking so much ibuprofen. 😄  

I'm only partly joking. I've been taking so much ibuprofen and meclizine (which is working btw) that I'm really am grumpy. I just took a stiff dose of niacin to pull it down. My tinnitus also ramped up dramatically as the brain inflammation kicked in, enough that I was really concerned, but it has gone down to *close* to a normal level. Like it might be 30-50% higher than normal but it's not at 300% like it was for a while. That was really bad. However I'm dramatically more sound sensitive right now.

So I would say we're keeping the sound sensitivity to a dull roar. In fact, it's kind of interesting data, because my sound sensitivity right now is at the level it was years ago. You don't really notice the *absence* of things, so I hadn't realized how much HBOT had improved it. I'm definitely looking forward to some HBOT to pull this inflammation back down and I'll try to get in sooner, rather than later, as @Pen suggested.

HBOT would not cause more heavy metals or graphene or whatever type stuff could conceivably be in vax stuff or just in body  to get into cells along with Oxygen could it? 
 

increased blood pressure does also sound like a concern  . Idk

 

but getting oxygen in to cells and inflammation down seem like they’d be good 

 

???

 

Do your doctors just leave it to you to schedule? Or have suggestions for when and what to look for?

 

methyl levels changes is interesting idea even if you were partly joking

[Jean in Newcastle]

12 minutes ago, PeterPan said:

Well @Halftime Hope I finally know why the death rates went up after covid vaccinations. People were killing people from high methyl levels from taking so much ibuprofen. 😄  

I'm only partly joking. I've been taking so much ibuprofen and meclizine (which is working btw) that I'm really am grumpy. I just took a stiff dose of niacin to pull it down. My tinnitus also ramped up dramatically as the brain inflammation kicked in, enough that I was really concerned, but it has gone down to *close* to a normal level. Like it might be 30-50% higher than normal but it's not at 300% like it was for a while. That was really bad. However I'm dramatically more sound sensitive right now.

So I would say we're keeping the sound sensitivity to a dull roar. In fact, it's kind of interesting data, because my sound sensitivity right now is at the level it was years ago. You don't really notice the *absence* of things, so I hadn't realized how much HBOT had improved it. I'm definitely looking forward to some HBOT to pull this inflammation back down and I'll try to get in sooner, rather than later, as @Pen suggested.

For most people (including me) side effects go away after just a couple of days. 

[PeterPan]

2 minutes ago, Pen said:

HBOT would not cause more heavy metals or graphene or whatever type stuff could conceivably be in vax stuff or just in body  to get into cells along with Oxygen could it? 

that's pretty in the weeds. I decided since I couldn't do anything about it completely not to stress about the rest of the stuff in the vax. I know it's in there, though I don't recall seeing metals only PEG (polyethelene glycol). 

https://portal.ct.gov/Coronavirus/Covid-19-Knowledge-Base/Vaccine-Ingredients

No metals that I can tell. Lots of funky stuff but no metals. And really, metals do their thing and have their opinions. You can detox metals with food, btdt.

I guess I am choosing not to live in fear. I'm an exceptionally sensitive person and there are ways to reverse and undo a lot. Blood clots, that would be bad. But the rest, eh we'll get through. 

I think the logic on the meclizine was that it has an antihistamine effect on the way to doing it's antivertigo gig. So it's both lowering some of that reaction/inflammation process and directly tamping down the vertigo. The other option was benadryl, and really that's way bad voodoo on me. This meclizine isn't bad at all. I just need to research to see how high I can take the doses. I saw 100mg and I'd really like it a bit higher. Not crazy higher, but a bit. It seems like I need it every 4 hours instead of every 6.

[PeterPan]

2 minutes ago, Jean in Newcastle said:

For most people (including me) side effects go away after just a couple of days. 

I hope so, thank you!! I have some social engagements planned this week, so I really wanted to feel well enough for them. 

[KSera]

6 minutes ago, PeterPan said:

I guess I am choosing not to live in fear. I'm an exceptionally sensitive person and there are ways to reverse and undo a lot. Blood clots, that would be bad. But the rest, eh we'll get through.

I think that's a smart attitude. For the vast majority of people, any side effect are over pretty quickly. I was fine after my first, but slept off the fever and stuff the day after my second. Woke up the following day normal. That seems to be pretty par for the course for most everybody I know who has had any systemic effects (there are the unlucky few who have something more, but they're rare enough I don't know any). Hopefully tomorrow is much better for you!

 

[PeterPan]

1 minute ago, KSera said:

I was fine after my first, but slept off the fever and stuff the day after my second.

See this is what I have extrapolated to mean that for me a spacing (8-12 weeks) would give me more time to recover before the 2nd. I don't think I'd want it to be more than this. This first shot for me sounds like your 2nd shot honestly. I've spent hours in bed today and I NEVER nap. Like I only nap or go to bed early if I have pneumonia. I could still be in bed for that matter and just don't know what it would do to my sleep tonight. 

Your logic on how it is supposed to flow (feel sick, feel better) makes sense. I hadn't thought through it so logically. That makes more sense than saying "side effects" as in things that just happen and keep happening. Indications of process is what you're saying. 

I think if I had done another 20-30 HBOT I wouldn't even have had the vertigo. I didn't want to wait that long, partly because I feel there is some imperativeness and partly because I wanted to make very sure I could have the lengths of spacings I want. So it was a calculated, accepted risk. But I won't be dumb and go into a shot that is likely to be WORSE without getting my head in a better place, that's for sure. What's happening this time is more than enough. 

[PeterPan]

6 minutes ago, KSera said:

Hopefully tomorrow is much better for you!

That would be nice! i'm not really planning it, but it would be a dramatic, welcome shift.

[KSera]

2 minutes ago, PeterPan said:

See this is what I have extrapolated to mean that for me a spacing (8-12 weeks) would give me more time to recover before the 2nd. I don't think I'd want it to be more than this. This first shot for me sounds like your 2nd shot honestly.

If it makes you hopeful, seems that a lot of people whose body reacted more to the first shot didn't have as strong of a reaction to their second shot (it makes me wonder if those people might have had Covid at some point and not known it, so their first shot was more like the second for people who haven't?? Totally just something I wonder, not anything with any evidence for it.)

[KungFuPanda]

Ok, goofy question 9 pages in, but how DO you pronounce Comirnaty?  If it's Coe-MEER-nuh-tee . . . or something in that ballpark, it's not that hard.  If it's pronounced "fred" or something, then I'm lost.  It seems unfortunately close to "comorbidity," but doesn't look any more convoluted than deflazocort or prednisilone.

[Pen]

27 minutes ago, PeterPan said:

that's pretty in the weeds. I decided since I couldn't do anything about it completely not to stress about the rest of the stuff in the vax. I know it's in there, though I don't recall seeing metals only PEG (polyethelene glycol). 

https://portal.ct.gov/Coronavirus/Covid-19-Knowledge-Base/Vaccine-Ingredients

No metals that I can tell. Lots of funky stuff but no metals. And really, metals do their thing and have their opinions. You can detox metals with food, btdt.

I guess I am choosing not to live in fear. I'm an exceptionally sensitive person and there are ways to reverse and undo a lot. Blood clots, that would be bad. But the rest, eh we'll get through. 

I think the logic on the meclizine was that it has an antihistamine effect on the way to doing it's antivertigo gig. So it's both lowering some of that reaction/inflammation process and directly tamping down the vertigo. The other option was benadryl, and really that's way bad voodoo on me. This meclizine isn't bad at all. I just need to research to see how high I can take the doses. I saw 100mg and I'd really like it a bit higher. Not crazy higher, but a bit. It seems like I need it every 4 hours instead of every 6.

 

 

 

I’ve never taken meclizine, but it sounds interesting to consider  if needing an antihistamine. I did also see it in some CV19 or CV19 vax list - dont recall any details

 

i would be interested in your foods to get rid of heavy metals  info - how you did it - when you are up to it 

 

[KSera]

11 minutes ago, KungFuPanda said:

Ok, goofy question 9 pages in, but how DO you pronounce Comirnaty?  If it's Coe-MEER-nuh-tee . . . or something in that ballpark, it's not that hard.  If it's pronounced "fred" or something, then I'm lost.  It seems unfortunately close to "comorbidity," but doesn't look any more convoluted than deflazocort or prednisilone.

Koe-mir'-na-tee

[PeterPan]

37 minutes ago, Pen said:

i would be interested in your foods to get rid of heavy metals  info - how you did it - when you are up to it 

Oh just google foods that chelate. I was using a nutritionist who did most of it. The metals pick where they bind in the body, often latching onto spots that should have had something else. So if you give it that something else (good nutrition) the body eventually decides to detox on its own. 

I had done IV chelation, etc. but doing it with food is much less harmful, much safer. Basically you up your nutrition/digestion/absorption and then start adding in small amounts of chelators (cilantro, what have you) and see if the body thinks it's ready. Pomegranate juice was really strong for me. Once you get clean, you can swig the stuff. 

39 minutes ago, Pen said:

I’ve never taken meclizine, but it sounds interesting to consider  if needing an antihistamine. I did also see it in some CV19 or CV19 vax list - dont recall any details

It's typically used for vertigo and it crosses the blood brain barrier. I wouldn't take it for cat allergies or something lol. I was just reading that that's how it was helping. (antihistamine to lower inflammation with inflammation in the vestibular causing the neuritis and hence vertigo). 

It worked smashingly for this btw. I still wish my tinnitus weren't up, but I think the HBOT will fix it. We had had it down to the point where it was not constant and not very loud, so to have it come back is a pain.

Arm feels like it has been punched. I don't know how long till that goes away and I don't even understand why it happens.

51 minutes ago, KSera said:

If it makes you hopeful, seems that a lot of people whose body reacted more to the first shot didn't have as strong of a reaction to their second shot (it makes me wonder if those people might have had Covid at some point and not known it, so their first shot was more like the second for people who haven't??

Oh that's interesting. I went so long that of course it's possible. But really, if I didn't have the head symptoms (which are inflammation of a pre-existing condition), I'd hardly have any symptoms at all. Well the fatigue, but that's not so bad. (mac truck, wiped out would be bad, lol.)

So no, I have to go on the assumption that the inflammation will increase with the next shot and have a solid plan. To me the people who are pissed are the ones who didn't realize it could happen. At least I know and can have a plan. If I hadn't had the meclizine, I would really been in a horrible strait. That vertigo could have gotten out of hand hot fast and I would not have been fit to drive to do anything about it. I can see why people were SO frustrated.

[Pen]

18 minutes ago, PeterPan said:

Oh just google foods that chelate. I was using a nutritionist who did most of it. The metals pick where they bind in the body, often latching onto spots that should have had something else. So if you give it that something else (good nutrition) the body eventually decides to detox on its own. 

I had done IV chelation, etc. but doing it with food is much less harmful, much safer. Basically you up your nutrition/digestion/absorption and then start adding in small amounts of chelators (cilantro, what have you) and see if the body thinks it's ready. Pomegranate juice was really strong for me. Once you get clean, you can swig the stuff. 
 

 

ty ! 👍

18 minutes ago, PeterPan said:

It's typically used for vertigo and it crosses the blood brain barrier. I wouldn't take it for cat allergies or something lol. I was just reading that that's how it was helping. (antihistamine to lower inflammation with inflammation in the vestibular causing the neuritis and hence vertigo). 

It worked smashingly for this btw. I still wish my tinnitus weren't up, but I think the HBOT will fix it. We had had it down to the point where it was not constant and not very loud, so to have it come back is a pain.

Arm feels like it has been punched. I don't know how long till that goes away and I don't even understand why it happens.

 

no idea why.

 someone I know dealing with frozen shoulder months later says she wished she’d kept moving through the pain - guess she was told that might have helped? 

18 minutes ago, PeterPan said:

Oh that's interesting. I went so long that of course it's possible. But really, if I didn't have the head symptoms (which are inflammation of a pre-existing condition), I'd hardly have any symptoms at all. Well the fatigue, but that's not so bad. (mac truck, wiped out would be bad, lol.)

So no, I have to go on the assumption that the inflammation will increase with the next shot and have a solid plan. To me the people who are pissed are the ones who didn't realize it could happen. At least I know and can have a plan. If I hadn't had the meclizine, I would really been in a horrible strait. That vertigo could have gotten out of hand hot fast and I would not have been fit to drive to do anything about it. I can see why people were SO frustrated.

Probably most people have no idea that meclizine or something like that could help

Edited August 30, 2021 by Pen

[PeterPan]

Just now, Pen said:

Probably most people have no idea that meclizine or something like that could help

I don't think it's considered a general help for covid vaccine symptoms. It's a vertigo medication and I'm using it for vertigo from the vaccine. I knew it was probable I'd have the vertigo since it's a concussion symptom I've had in the past. The vaccine causes inflammation that hits any weak point. The concussions are my weakest point (probably), so I went in knowing it could happen. As soon as the vertigo started, I began the meclizine. 

https://vestibular.org/forum/dizziness/covid-19-vaccine-side-effects/paged/23/

This is the forum and thread where I had learned about it as a possibility. It's a forum for people with vestibular issues and apparently the flare up is pretty common. But it's a very direct correlation: I'm taking a vertigo med because the vaccine resulted in inflammation of a pre-existing condition resulting in vertigo.

I'm making no other claims of applicability other than the very direct obvious one. (vertigo med taken for vertigo)

[PeterPan]

I think my head is improving btw. We're at 36 hours post shot, and some of my clarity is coming back. My hands are cold (not a shock) and energy down. Clarity returning a bit is good, because that's in spite of the meclizine and ibuprofen, meaning I may start to come to the other side of this thing and feel good by tomorrow. 

12 minutes ago, Pen said:

someone I know dealing with frozen shoulder months later says she wished she’d kept moving through the pain - guess she was told that might have helped? 

I can see where it would be easy to stop! It hurts enough now that I really have to be intentional. It's not every direction, only the directions that stretch the injection site muscle, sigh. 

[Halftime Hope]

11 hours ago, PeterPan said:

I think my head is improving btw. We're at 36 hours post shot, and some of my clarity is coming back. My hands are cold (not a shock) and energy down. Clarity returning a bit is good, because that's in spite of the meclizine and ibuprofen, meaning I may start to come to the other side of this thing and feel good by tomorrow. 

I can see where it would be easy to stop! It hurts enough now that I really have to be intentional. It's not every direction, only the directions that stretch the injection site muscle, sigh. 

@PeterPan I'm just popping in for a few seconds before the work week begins, after a full day away from the thread yesterday. I'm glad you're back on the upswing! Wishing you completely back to normal, very soon. 

[Dmmetler]

12 hours ago, PeterPan said:

I don't think it's considered a general help for covid vaccine symptoms. It's a vertigo medication and I'm using it for vertigo from the vaccine. I knew it was probable I'd have the vertigo since it's a concussion symptom I've had in the past. The vaccine causes inflammation that hits any weak point. The concussions are my weakest point (probably), so I went in knowing it could happen. As soon as the vertigo started, I began the meclizine. 

https://vestibular.org/forum/dizziness/covid-19-vaccine-side-effects/paged/23/

This is the forum and thread where I had learned about it as a possibility. It's a forum for people with vestibular issues and apparently the flare up is pretty common. But it's a very direct correlation: I'm taking a vertigo med because the vaccine resulted in inflammation of a pre-existing condition resulting in vertigo.

I'm making no other claims of applicability other than the very direct obvious one. (vertigo med taken for vertigo)

I was warned to start taking H2 blockers as soon as I could, because it is common for people who get hives to get hives after the shot, and one of the things that happens when I flare is hives that often become recurrent until hit with high doses of steroids. It's definitely a fine line between symptom control and blocking immune response. It's also a place where knowing how your specific body is likely to inflame is very helpful. In some ways, it seems like the chronic disease community has gotten through the vaccines with fewer annoying side effects simply because we know what to expect. (I knew I would get hives, itching, and joint inflammation. DH had no clue what to expect). 

 

I'm glad things are going better. For me, it took about 48 hours to start feeling like me again. 

[PeterPan]

2 hours ago, Halftime Hope said:

Wishing you completely back to normal, very soon. 

Thanks! I'm booked for HBOT Wednesday to finish out the week, so that should put me back in working order. I'm still a little wobbly and taking the meclizine, but I've definitely turned the corner. My arm pain was exquisite last night and I had chills, but now that pain is almost gone and my temp regulation feels more normal. I would think just 1-2 HBOT will have my head back where it was. 

So I guess you could say controlled risk and I survived.

 

[PeterPan]

58 minutes ago, Dmmetler said:

In some ways, it seems like the chronic disease community has gotten through the vaccines with fewer annoying side effects simply because we know what to expect.

Yes! And it helped frankly to have had so many people do it first. At this point, there's a lot of track record if you google your specific issue plus the vax. It's basically predictable. If I had had this happen without knowing it could, that would have been very frustrating. But I knew it was probable and had the treatments and am getting through.

What I don't know is what is likely to happen with ds. He's 12, almost 13. Would it be basically nothing? Or what I had minus the vertigo? I can't give him ibuprofen. Well I could, but it's really dangerous. I'd have to give it to him and then tamp it down pronto with niacin. He could do tylenol for headache/pain, but that wouldn't help inflammation. I've used turmeric on him successfully for mild inflammation, but I'm not sure that would touch what's going on with this vax. 

Maybe I can give him a *low* dose of the ibuprofen, enough to keep inflammation in check but not more than what I can control for side effects with niacin. That could be a game plan.

I'm getting flack about possibly vaccinating him because there are stories of people on the spectrum who already have praxis losing speech with vaccines. So I'm not clear on that mechanism but controlling inflammation seems wise. If I were smart, I'd go ahead and google it, duh. What I don't want is boogieman and blanket arguments. Specifics make sense to me. Like it made sense that inflammation would target weak points and that my brain is mine. I just don't know what his are. 

I imagine anyone would CP would probably be an analog, since that's praxis. I really don't know. His apraxia is genetic and I'm not clear whether CP is injury or genetic or both. But I'll bet, like with the TBI, there's data now to predict, hmm. I figured my back up plan was to throw him in HBOT. 

[bluemongoose]

PeterPan-I too had vertigo with the first shot, and I do not have a TBI. The first shot wiped me out for about 2.5 days. While I didnt feel super with the second shot, it was nowhere near as bad as the first. It took me down for only 24hrs. I had a headache with the second and aches, but no vertigo. I hope it works this way for your second shot too!

[wathe]

15 hours ago, KungFuPanda said:

Ok, goofy question 9 pages in, but how DO you pronounce Comirnaty?  If it's Coe-MEER-nuh-tee . . . or something in that ballpark, it's not that hard.  If it's pronounced "fred" or something, then I'm lost.  It seems unfortunately close to "comorbidity," but doesn't look any more convoluted than deflazocort or prednisilone.

Quick little article about the name "comirnaty":

"Dubbed "Comirnaty," the Pfizer-BioNTech vaccine's new name is intended to be a mash-up of community, immunity, COVID-19, as well as mRNA, according to Davidson, professor and chair of linguistics at New York University. "

[Dmmetler]

34 minutes ago, PeterPan said:

Yes! And it helped frankly to have had so many people do it first. At this point, there's a lot of track record if you google your specific issue plus the vax. It's basically predictable. If I had had this happen without knowing it could, that would have been very frustrating. But I knew it was probable and had the treatments and am getting through.

What I don't know is what is likely to happen with ds. He's 12, almost 13. Would it be basically nothing? Or what I had minus the vertigo? I can't give him ibuprofen. Well I could, but it's really dangerous. I'd have to give it to him and then tamp it down pronto with niacin. He could do tylenol for headache/pain, but that wouldn't help inflammation. I've used turmeric on him successfully for mild inflammation, but I'm not sure that would touch what's going on with this vax. 

Maybe I can give him a *low* dose of the ibuprofen, enough to keep inflammation in check but not more than what I can control for side effects with niacin. That could be a game plan.

I'm getting flack about possibly vaccinating him because there are stories of people on the spectrum who already have praxis losing speech with vaccines. So I'm not clear on that mechanism but controlling inflammation seems wise. If I were smart, I'd go ahead and google it, duh. What I don't want is boogieman and blanket arguments. Specifics make sense to me. Like it made sense that inflammation would target weak points and that my brain is mine. I just don't know what his are. 

I imagine anyone would CP would probably be an analog, since that's praxis. I really don't know. His apraxia is genetic and I'm not clear whether CP is injury or genetic or both. But I'll bet, like with the TBI, there's data now to predict, hmm. I figured my back up plan was to throw him in HBOT. 

FWIW, my side effects were all autoimmune, not CP/Dyspraxia. I didn't have an increase in athetosis or more difficulty with motor that couldn't be explained by joint inflammation, nor did I have more word finding or production difficulties. My specific CP is blamed on Prenatal injury. 

[Spryte]

@PeterPan I’m glad you got your shot, and hoping that you feel better today.

FWIW, my first round with the shot was much worse than the second. It really knocked me flat for a few days. Felt like the flu. I didn’t do any anti-inflammation measures, but should have. I had, though, been sick prior to getting the shot, and should have probably waited a week to further recover.

The second shot was a breeze, comparatively. I hope it will be the same for you!

[KSera]

4 hours ago, PeterPan said:

Yes! And it helped frankly to have had so many people do it first. At this point, there's a lot of track record if you google your specific issue plus the vax. It's basically predictable. If I had had this happen without knowing it could, that would have been very frustrating. But I knew it was probable and had the treatments and am getting through.

What I don't know is what is likely to happen with ds. He's 12, almost 13. Would it be basically nothing? Or what I had minus the vertigo? I can't give him ibuprofen. Well I could, but it's really dangerous. I'd have to give it to him and then tamp it down pronto with niacin. He could do tylenol for headache/pain, but that wouldn't help inflammation. I've used turmeric on him successfully for mild inflammation, but I'm not sure that would touch what's going on with this vax. 

Maybe I can give him a *low* dose of the ibuprofen, enough to keep inflammation in check but not more than what I can control for side effects with niacin. That could be a game plan.

I'm getting flack about possibly vaccinating him because there are stories of people on the spectrum who already have praxis losing speech with vaccines. So I'm not clear on that mechanism but controlling inflammation seems wise. If I were smart, I'd go ahead and google it, duh. What I don't want is boogieman and blanket arguments. Specifics make sense to me. Like it made sense that inflammation would target weak points and that my brain is mine. I just don't know what his are. 

I imagine anyone would CP would probably be an analog, since that's praxis. I really don't know. His apraxia is genetic and I'm not clear whether CP is injury or genetic or both. But I'll bet, like with the TBI, there's data now to predict, hmm. I figured my back up plan was to throw him in HBOT. 

FWIW, my kid with ASD had no reaction at all to the shots. She had a slightly sore arm after the second one, but that was it, and I don’t even consider that a reaction. none of my kids had anything but a sore arm except my 21 year old (not my ASD kid) had sore joints after the second. That went away after a day or two, and they did not choose to medicate it, as we tend to ride these things out if we are able. My kid closest in age to your DS had nothing whatever after either shot. Autism is a separate risk factor for more severe Covid disease, so it seems extra important for these kids to be protected.

[ktgrok]

My 22 yr old on the spectrum had no reaction. 

[Pawz4me]

20 minutes ago, ktgrok said:

My 22 yr old on the spectrum had no reaction. 

Neither did mine, and he had an apraxia (speech) diagnosis when he was a kiddo.

[mellifera33]

Comirnaty sounds like the way someone I knew years ago pronounced community, and each time I read it I hear his voice saying “Just doin’ my part to protect the comirnaty.” 

[KSera]

38 minutes ago, mellifera33 said:

Comirnaty sounds like the way someone I knew years ago pronounced community, and each time I read it I hear his voice saying “Just doin’ my part to protect the comirnaty.” 

This made me roll, because I can hear that perfectly in my head 🤣. 

[PeterPan]

1 hour ago, Pawz4me said:

Neither did mine, and he had an apraxia (speech) diagnosis when he was a kiddo.

Ooo, I extra appreciate this, because that has been the wild card for us! 

Well I'm fascinated to hear how well it has been going for the other spectrum kids. That makes me feel more confident about it.

 

[Pen]

21 hours ago, PeterPan said:

I think my head is improving btw. We're at 36 hours post shot, and some of my clarity is coming back. My hands are cold (not a shock) and energy down. Clarity returning a bit is good, because that's in spite of the meclizine and ibuprofen, meaning I may start to come to the other side of this thing and feel good by tomorrow. 

glad clarity returning and hope for good by tomorrow !!!  And then even better Wednesday! 

 

 

21 hours ago, PeterPan said:

I can see where it would be easy to stop! It hurts enough now that I really have to be intentional. It's not every direction, only the directions that stretch the injection site muscle, sigh. 

 

[historically accurate]

2 hours ago, PeterPan said:

Ooo, I extra appreciate this, because that has been the wild card for us! 

Well I'm fascinated to hear how well it has been going for the other spectrum kids. That makes me feel more confident about it.

 

My 15 (then, now 16) yo had no issues with her shots. She had Apraxia when she was younger (speech therapy from age 2-almost 13). She's not on the spectrum though.

[Halftime Hope]

On 8/29/2021 at 1:16 PM, PeterPan said:

They just had some vague theory about oxygen killing bacteria. I didn't want to undercut the process of the immune system actually fighting this thing.

Thanks, that's sorta what I thought. Didn't go anywhere this morning and will lay low till I'm sure.

Of course. 😉  The whole point of HBOT is to reduce inflammation. I met a man at the clinic doing HBOT for long covid and saw him turn around over a couple weeks. I don't think he even did that much, maybe 20 sessions. And his long covid was pretty severe, landing him the ER with heart issues. 

Actually that's the only reason I'm not booked this week is they were so FULL! But I'll probably text and try to snag a slot.

@PeterPan and @Pen, I was listening to something as I drove a few weeks ago about an HBOT provider in my area treating long-COVID patients and having some improvement with the treatments.  IIRC, these were patients who had plateaued, not improving.  At the time I wondered if this was a case of the provider "looking at everything as though it was a nail, since he owned a hammer."  But apparently it helps for some people.   

@PeterPan, hoping you continue to have improvements daily.  :-)  

[Halftime Hope]

On 8/30/2021 at 8:44 AM, PeterPan said:

Yes! And it helped frankly to have had so many people do it first. At this point, there's a lot of track record if you google your specific issue plus the vax. It's basically predictable. If I had had this happen without knowing it could, that would have been very frustrating. But I knew it was probable and had the treatments and am getting through.

What I don't know is what is likely to happen with ds. He's 12, almost 13. Would it be basically nothing? Or what I had minus the vertigo? I can't give him ibuprofen. Well I could, but it's really dangerous. I'd have to give it to him and then tamp it down pronto with niacin. He could do tylenol for headache/pain, but that wouldn't help inflammation. I've used turmeric on him successfully for mild inflammation, but I'm not sure that would touch what's going on with this vax. 

Maybe I can give him a *low* dose of the ibuprofen, enough to keep inflammation in check but not more than what I can control for side effects with niacin. That could be a game plan.

I'm getting flack about possibly vaccinating him because there are stories of people on the spectrum who already have praxis losing speech with vaccines. So I'm not clear on that mechanism but controlling inflammation seems wise. If I were smart, I'd go ahead and google it, duh. What I don't want is boogieman and blanket arguments. Specifics make sense to me. Like it made sense that inflammation would target weak points and that my brain is mine. I just don't know what his are. 

I imagine anyone would CP would probably be an analog, since that's praxis. I really don't know. His apraxia is genetic and I'm not clear whether CP is injury or genetic or both. But I'll bet, like with the TBI, there's data now to predict, hmm. I figured my back up plan was to throw him in HBOT. 

Tim Spector and the ZOE app crew had a great u-tube webinar today on the data on children with the Delta variant and the risk-benefit ratio of vaccines at different ages, along with mentions throughout of children with health challenges.  It might be helpful to you and worth a listen; there's really good stuff at the end so don't miss that.  https://youtu.be/Pg1TKv04UpU 

 

 

[PeterPan]

9 minutes ago, Halftime Hope said:

@PeterPan, hoping you continue to have improvements daily.  🙂 

I think I've sort of plateaued at a state of yuckiness. Mild vertigo, mild headaches, mild yuck. I'm scheduled for HBOT tomorrow so hopefully it will kick it. I'm wobbly without the meclizine and off kilter with it. Meanwhile I'm getting flack from the peanut gallery (my mother) about how if I do HBOT I'm destroying the vaccine. I assume they're following protocol and that it was researched. At this point, I just want to feel better. 

 

3 minutes ago, Halftime Hope said:

Tim Spector and the ZOE app crew had a great u-tube webinar today on the data on children with the Delta variant and the risk-benefit ratio of vaccines at different ages, along with mentions throughout of children with health challenges.  It might be helpful to you and worth a listen; there's really good stuff at the end so don't miss that.  https://youtu.be/Pg1TKv04UpU 

 

 

Oh mercy, that's 1 hour 15! You watched the whole thing? I'll skim it, but it doesn't matter. No vax, no cruise. So the only question is harm, not whether my socially isolated kid was likely to get the disease and whether it's worth it in general. He will most certainly be exposed during our cruise and a positive would end our trip (2 weeks) and have us sent home. So he has to be vaccinated unless there's some dramatic evidence that it has a significant probably of harming him.

Honestly, my head is just not clear. I'm half swirly. I'll be rational again after the HBOT hopefully. 

[Dmmetler]

1 minute ago, PeterPan said:

I think I've sort of plateaued at a state of yuckiness. Mild vertigo, mild headaches, mild yuck. I'm scheduled for HBOT tomorrow so hopefully it will kick it. I'm wobbly without the meclizine and off kilter with it. Meanwhile I'm getting flack from the peanut gallery (my mother) about how if I do HBOT I'm destroying the vaccine. I assume they're following protocol and that it was researched. At this point, I just want to feel better. 

 

Oh mercy, that's 1 hour 15! You watched the whole thing? I'll skim it, but it doesn't matter. No vax, no cruise. So the only question is harm, not whether my socially isolated kid was likely to get the disease and whether it's worth it in general. He will most certainly be exposed during our cruise and a positive would end our trip (2 weeks) and have us sent home. So he has to be vaccinated unless there's some dramatic evidence that it has a significant probably of harming him.

Honestly, my head is just not clear. I'm half swirly. I'll be rational again after the HBOT hopefully. 

I hope the HBOT helps. 

[Catwoman]

On 8/29/2021 at 9:38 AM, Matryoshka said:

Or you'll be innoculated against hot vampires?

Ok now, wait a minute.

I was fine with the microchip and I was fine with my brain being controlled by Bill Gates and Anthony Fauci, but this is a bridge too far. 

I can’t believe the manufacturer’s safety information sheet didn’t disclose this, and I am going to seriously regret having been vaccinated if it turns out that my body is now actively repelling hot vampires. 

Ugh. I can’t catch a break. 😉 

 

[Halftime Hope]

44 minutes ago, PeterPan said:

I think I've sort of plateaued at a state of yuckiness. Mild vertigo, mild headaches, mild yuck. I'm scheduled for HBOT tomorrow so hopefully it will kick it. I'm wobbly without the meclizine and off kilter with it. Meanwhile I'm getting flack from the peanut gallery (my mother) about how if I do HBOT I'm destroying the vaccine. I assume they're following protocol and that it was researched. At this point, I just want to feel better. 

 

Oh mercy, that's 1 hour 15! You watched the whole thing? I'll skim it, but it doesn't matter. No vax, no cruise. So the only question is harm, not whether my socially isolated kid was likely to get the disease and whether it's worth it in general. He will most certainly be exposed during our cruise and a positive would end our trip (2 weeks) and have us sent home. So he has to be vaccinated unless there's some dramatic evidence that it has a significant probably of harming him.

Honestly, my head is just not clear. I'm half swirly. I'll be rational again after the HBOT hopefully. 

Oh, good grief.  Seriously?  What would be the cellular mechanism for HBOT destroying the vaccine?  I'm so sorry.  I'll send you a package with rhino-skin and bean dip, OK? 

As far as ds needing a vax for cruises, I get it. Huge benefit there! Best wishes as you navigate tricky waters. 

 

 

[Pen]

2 hours ago, Halftime Hope said:

@PeterPan and @Pen, I was listening to something as I drove a few weeks ago about an HBOT provider in my area treating long-COVID patients and having some improvement with the treatments.  IIRC, these were patients who had plateaued, not improving.  At the time I wondered if this was a case of the provider "looking at everything as though it was a nail, since he owned a hammer."  But apparently it helps for some people.   

@PeterPan, hoping you continue to have improvements daily.  🙂 

i saw that on some public available articles

i think speculative reason I saw is that lack of oxygen — not so much lung oxygen issue as a blood oxygen issue so essentially all tissues, mitochondria, red blood cells ...  - may be a chronic problem in long Covid

[Wheres Toto]

On 8/30/2021 at 5:40 PM, PeterPan said:

Ooo, I extra appreciate this, because that has been the wild card for us! 

Well I'm fascinated to hear how well it has been going for the other spectrum kids. That makes me feel more confident about it.

 

My son, on the spectrum and speech delayed, had no problems with his vaccines.   Maybe slept a little more than usual but he's 16 (15 at time of shots) so hard to say. 

Interestingly, when we went for his first shot someone noticed his pacing while listening to music and offered us a quiet area to wait and get his shot if it would help him.   We didn't need it but I found it nice that it was offered.