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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Question for vaccinated people: How have you recovered from Omicron?

GlassCannonLife

Senior Member
Messages
819
So today was definitely better than yesterday.

But I read that ivermectin has an 18 h half life, so will take 3 - 3.75 days to reach steady state (72 - 90 h), and the benefit today is probably just the anti-inflammatory effect and the building half life.. Lol. Anyway I will stay on it for now and see how tomorrow etc goes.

I might try drop my pregnenolone dose more taking advantage of the ivermectin but once I run out I don't know if I'll start to feel worse again. Why won't the PEM clear? So weird.

Anyway hopefully it's clearing something as well as being anti-inflammatory, but knowing our luck it's probably just the latter.


Is your PEM improving? How are the fevers?
 

elvira

Senior Member
Messages
146
So today was definitely better than yesterday.

But I read that ivermectin has an 18 h half life, so will take 3 - 3.75 days to reach steady state (72 - 90 h), and the benefit today is probably just the anti-inflammatory effect and the building half life.. Lol. Anyway I will stay on it for now and see how tomorrow etc goes.

I might try drop my pregnenolone dose more taking advantage of the ivermectin but once I run out I don't know if I'll start to feel worse again. Why won't the PEM clear? So weird.

Anyway hopefully it's clearing something as well as being anti-inflammatory, but knowing our luck it's probably just the latter.


Is your PEM improving? How are the fevers?

But that’s great that it is doing something at least! I had to reorder mine from Canada, we’ll see if it gets through the customs..

My fever was 38,8 this morning... but my PEM feels okay, I don’t really know what is going on. 🤪 Thank you for the inflammation syndrome tips, but I don’t have any other symtoms than the fever so hope it’s nothing serious. Still hoping it is just the LDN messing with me! We’ll see how things evolve, I’m afraid of a new crash induced by this temperature.
 

GlassCannonLife

Senior Member
Messages
819
But that’s great that it is doing something at least! I had to reorder mine from Canada, we’ll see if it gets through the customs..

My fever was 38,8 this morning... but my PEM feels okay, I don’t really know what is going on. 🤪 Thank you for the inflammation syndrome tips, but I don’t have any other symtoms than the fever so hope it’s nothing serious. Still hoping it is just the LDN messing with me! We’ll see how things evolve, I’m afraid of a new crash induced by this temperature.

Hm the ivermectin is fucking with my vision a bit.. Weird peripheral vision artefacts kind of strange feeling.. Going to just stop it, don't want to fuck with my vision hey
 

GlassCannonLife

Senior Member
Messages
819
So the vision issues went away (weird striping appearing all over objects in my peripheral vision.. Super off-putting). It definitely helps with inflammation. Not sure if there's any antiviral effect at the doses we can take?

Today I should have had serum level equivalent of around 6 mg - might take this amount in a few days if I feel the need to, or just stay off it. Have done 3 days on 550 mg pregnenolone though so a little progress finally.!

Also started proresolving mediators (life extension ones off Amazon) yesterday, I'm not sure if they are helping - seems like yes considering everything? But too early to know for sure.

How are you doing @elvira?
 

elvira

Senior Member
Messages
146
So the vision issues went away (weird striping appearing all over objects in my peripheral vision.. Super off-putting). It definitely helps with inflammation. Not sure if there's any antiviral effect at the doses we can take?

Today I should have had serum level equivalent of around 6 mg - might take this amount in a few days if I feel the need to, or just stay off it. Have done 3 days on 550 mg pregnenolone though so a little progress finally.!

Also started proresolving mediators (life extension ones off Amazon) yesterday, I'm not sure if they are helping - seems like yes considering everything? But too early to know for sure.

How are you doing @elvira?

That’s great, a little progress, we take everything we can get🙏

So after 5 days of high fever it finally dropped to below 38 again, i’m so relieved. Still higher temp than usual but i guess that will linger on for long... And i’m feeling okay, just very tired but no PEM. Hope it stays away! I’m better after this fever episode so Maybe the LDN helped clear some viruses by activating the immune system? Since it is supposed to switch from TH2 to TH1 i think it should work better on viruses? Not really sure what happend. I did write my doctor but as long as my fever don’t go up again I think i’ll stay put.

Interesting with the mediators, never heard of before. I just ordered the grape seed extract and lumbrokinase, and some cordyceps mushrooms aswell ☺️🍄
 

GlassCannonLife

Senior Member
Messages
819
That’s great, a little progress, we take everything we can get🙏

So after 5 days of high fever it finally dropped to below 38 again, i’m so relieved. Still higher temp than usual but i guess that will linger on for long... And i’m feeling okay, just very tired but no PEM. Hope it stays away! I’m better after this fever episode so Maybe the LDN helped clear some viruses by activating the immune system? Since it is supposed to switch from TH2 to TH1 i think it should work better on viruses? Not really sure what happend. I did write my doctor but as long as my fever don’t go up again I think i’ll stay put.

Interesting with the mediators, never heard of before. I just ordered the grape seed extract and lumbrokinase, and some cordyceps mushrooms aswell ☺️🍄

Oh wow, great to hear you're feeling so much better! Hope you keep improving.
 

GlassCannonLife

Senior Member
Messages
819
That’s great, a little progress, we take everything we can get🙏

So after 5 days of high fever it finally dropped to below 38 again, i’m so relieved. Still higher temp than usual but i guess that will linger on for long... And i’m feeling okay, just very tired but no PEM. Hope it stays away! I’m better after this fever episode so Maybe the LDN helped clear some viruses by activating the immune system? Since it is supposed to switch from TH2 to TH1 i think it should work better on viruses? Not really sure what happend. I did write my doctor but as long as my fever don’t go up again I think i’ll stay put.

Interesting with the mediators, never heard of before. I just ordered the grape seed extract and lumbrokinase, and some cordyceps mushrooms aswell ☺️🍄

Cordyceps for immunomodulation?

Not sure if you'd have to check dosage of the grape seed vs aspirin if you're still on that if they're both having anti-platelet activity?
 

elvira

Senior Member
Messages
146
Cordyceps for immunomodulation?

Not sure if you'd have to check dosage of the grape seed vs aspirin if you're still on that if they're both having anti-platelet activity?

Yeah i read that the cordycep can modulate cytokine response, and is also an antiinflammatory... Worth a shot but I am mixing things a bit wildly😅 I also have some skullcap at home since earlier that i’m trying.

Ah that’s good advice. On iHerb they only had pretty weak Grape seed extract but i’ll be careful not to use too much. I saw some studies using 400 mg. Crazy how some labels sell them as 100 mg and others 16000 mg haha?
 

elvira

Senior Member
Messages
146
@GlassCannonLife How are you holding up? I’m in a new crash since a couple of days:( I was feeling pretty good after my fever episode but maybe it was just adrenaline from the infection holding me up. Hugs! 🌼
 

GlassCannonLife

Senior Member
Messages
819
@GlassCannonLife How are you holding up? I’m in a new crash since a couple of days:( I was feeling pretty good after my fever episode but maybe it was just adrenaline from the infection holding me up. Hugs! 🌼

Ah that sucks.!

Yeah I'm doing quite badly hey, can't tolerate speaking to anyone at all really or I start crashing and can use phone a couple min at a time. Just lying still all day trying not to crash then dragging myself to my meals.. Hoping this new level of extreme rest will help.. Day 5 now, with 500 mg preg and 7 tsp cumin. Will see how it goes..

Hugs!
 

Judee

Psalm 46:1-3
Messages
4,461
Location
Great Lakes
@elvira, I just watched a snippet of a video talking about how they have found people with lower vitamin D levels do more poorly when they are infected with Covid.

It made me wonder if either you or @GlassCannonLife happen to know what your levels are. ??

High dose Prohealth Vitamin D (or a fish oil type) will make me feel better as long as I take it with K2 and Vitamin C. It's one of the things that will give me the slightest boost and honestly after 40 years with this disease only about a handful of things do that.

I don't take it everyday because it's high dose and the liver can store it for use as needed.

Both @Howard and @Johannes have talked about how spending time in the sun is improving their conditions.

I know a third member who also told me the same thing.

Johannes has a thread here: https://forums.phoenixrising.me/threads/a-treatment-that-helps-me-tremendously.87136/

@SWAlexander also just posted a thread about Vitamin D here:https://forums.phoenixrising.me/thr...w-to-increase-intake-of-vital-nutrient.87412/

Anyway, just a thought. One Brazilian doctor is using it for MS patients (as well as other autoimmune diseases) and having some good success so there definitely has to be some kind of immunity connection. ??
 
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GlassCannonLife

Senior Member
Messages
819
Thanks @Judee, unfortunately I've been taking a lot of vitamin D for a while and levels are up around 120 nmol/L. Could try some sun? It could be different. But not quite stable enough to go out at the moment.. Maybe in a few weeks if I am lucky.
 

elvira

Senior Member
Messages
146
How's the crash @elvira? Hope you're doing ok

Not so good, I’m in a pretty bad shape. I can still talk and come up and eat etc but very weak. Feels scary how covid could fuck us up like this.

Had a Skype appointment with a new ME specialist and asked about covid. He didn’t seem too worried and said he hadn’t seen anyone get permanently worse. So Maybe there is hope for us☺️ He’s putting me on low dose hydro cortisone and Mirodine for my POTS that’s worse since covid. I’m staying put on a low dose LDN for now because rising it made me worse.

How are you doing? Big hug!
 

GlassCannonLife

Senior Member
Messages
819
Not so good, I’m in a pretty bad shape. I can still talk and come up and eat etc but very weak. Feels scary how covid could fuck us up like this.

Had a Skype appointment with a new ME specialist and asked about covid. He didn’t seem too worried and said he hadn’t seen anyone get permanently worse. So Maybe there is hope for us☺️ He’s putting me on low dose hydro cortisone and Mirodine for my POTS that’s worse since covid. I’m staying put on a low dose LDN for now because rising it made me worse.

How are you doing? Big hug!

Yeah crazy how bad it messed us up! That's great that he hasn't seen anyone get permanently worse, fingers crossed hey.

Ah cool, what dose hydrocortisone did he put you on? I think my POTS has stayed the same (when my hr is normal at rest) but I have had tremors in my hands a feet a tiny bit and when I swallow sometimes I choke.. I read that was a side effect a bunch of people had, must have caused some nerve damage. Having to be careful when I eat or drink so I don't accidentally get pneumonia..

What dose ldn are you on? I didn't end up ordering mine, wasn't sure if I should bother..

I managed to improve a tiny bit this week! Resting extremely with no talking or interacting, and getting up as little as possible, minimal phone etc. Heart rate has slowed down a little over the week and I'm a little less sensitive to seeing my parents when they come in. So hopefully that can continue - my first real progress so far. Going to stay doing the same for a while I think then try to lower doses if I can gradually.

Not sure about BC007 - sounds interesting for us but isn't it hard to access?

Edit: forgot to send hugs back! 😊
 
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elvira

Senior Member
Messages
146
Yeah crazy how bad it messed us up! That's great that he hasn't seen anyone get permanently worse, fingers crossed hey.

Ah cool, what dose hydrocortisone did he put you on? I think my POTS has stayed the same (when my hr is normal at rest) but I have had tremors in my hands a feet a tiny bit and when I swallow sometimes I choke.. I read that was a side effect a bunch of people had, must have caused some nerve damage. Having to be careful when I eat or drink so I don't accidentally get pneumonia..

What dose ldn are you on? I didn't end up ordering mine, wasn't sure if I should bother..

I managed to improve a tiny bit this week! Resting extremely with no talking or interacting, and getting up as little as possible, minimal phone etc. Heart rate has slowed down a little over the week and I'm a little less sensitive to seeing my parents when they come in. So hopefully that can continue - my first real progress so far. Going to stay doing the same for a while I think then try to lower doses if I can gradually.

Not sure about BC007 - sounds interesting for us but isn't it hard to access?

5 mg hydro cortisone twice a day. My heart rate is crazy and i get bouts of dizziness just laying down, like i’m falling or something. Scary with the choking!

I’m just on 0,75 mg of LDN. I think it helped clear the covid but when I went up to 1,125 mg I felt more crashed. Can’t really handle the process atm.

That’s really great news!! It warms my heart, it shows progress is possible🙏 I’m very impressed by you... I will try to be more strict also with resting more, distracting myself way too much with my phone.

Yes for the BC007 we have to wait for the results of the trials that start this summer. I think I have too high hopes for it haha, it just sounds so good.