I think I'm getting worse 😭

[Pawz4me]

Regarding ivermectin -- I'm totally doubtful based on the lack of credible results so far. And I think it's looney tunes to self-medicated with an animal product that can have significant adverse effects. But I'm keeping my eye on this study. Hopefully we'll know some preliminary results from it sooner rather than later, about ivermectin as well as fluvoxamine and fluticasone.

[Jean in Newcastle]

I forgot to put Quercetin on my supplement list. 

[WildflowerMom]

Just now, Spy Car said:

Taking medications that can do a person harm--or suggesting to someone who is hurting the way busymom7 clearly is--just isn't wise.

All leading medical authorities are urging doctors NOT to prescribe Ivermectin against Covid as it doesn't work as a "cure" and it can cause harm.

CDC, National Institutes of Health, WHO, Merck Pharmaceutical (who make the drug), The Infectious Diseases Society of America, the American Medical Association (AMA), American Pharmacists Association (APHA), and American Society of Health-System Pharmacists (ASHP) all strongly oppose the ordering, prescribing, or dispensing of ivermectin to prevent or treat COVID-19 as an off label use.

I'm not the one trying to "play doctor," with all due respect.

Bill

 

 

My in-laws took ivermectin, antibody infusion, and to my chagrin, hydrocloroquine.    I wasn't crazy about it at all.   I seriously was planning my fil's funeral when I found out how his covid was progressing.  Anyway, much to my surprise, they both got better quickly.  It made me realize I don't have all the answers and if I get covid, I'm open to whatever my *doc* wants to try.  I would **not** advise ever taking those meds yourself.  Ask your doctor.  So, I guess that means I'm not playing doctor, with all due respect.     

[WildflowerMom]

2 minutes ago, Pawz4me said:

Regarding ivermectin -- I'm totally doubtful based on the lack of credible results so far. And I think it's looney tunes to self-medicated with an animal product that can have significant adverse effects. But I'm keeping my eye on this study. Hopefully we'll know some preliminary results from it sooner rather than later, about ivermectin as well as fluvoxamine and fluticasone.

I also think it's crazy to self-medicate.  I've never said to do that.  Talk to your doctor about it.  My in-laws dr prescribed it, so this was not a case of someone running to tractor supply to buy horse paste.    Those people have gone off the deep end.   

[Spy Car]

2 minutes ago, WildflowerMom said:

My in-laws took ivermectin, antibody infusion, and to my chagrin, hydrocloroquine.    I wasn't crazy about it at all.   I seriously was planning my fil's funeral when I found out how his covid was progressing.  Anyway, much to my surprise, they both got better quickly.  It made me realize I don't have all the answers and if I get covid, I'm open to whatever my *doc* wants to try.  I would **not** advise ever taking those meds yourself.  Ask your doctor.  So, I guess that means I'm not playing doctor, with all due respect.     

Doctors are being urged not to use a medication that has been demonstrated to be ineffective. Those who do so are going against the best medical science.

Pity those who fall into the hands of quacks.

Bill

 

[WildflowerMom]

Just now, Spy Car said:

Doctors are being urged not to use a medication that has been demonstrated to be ineffective. Those who do so are going against the best medical science.

Pity those who fall into the hands of quacks.

Bill

 

Your ego is gigantic.   

Pity those who blindly listen to some know-it-all man on an Internet forum.   

I hope people will instead talk to their **doctors** if they get covid.  

 

and busymom, I hope you start feeling better soon.    Many hugs... 💛

[madteaparty]

28 minutes ago, Spy Car said:

Not "incorrect" in any measure.

The biggest trial to date on Ivermectin (the Together Trail) concluded that Ivermectin is ineffective against Covid, as have smaller trials.

This is what the joint press release by the American Medical Association (AMA), American Pharmacists Association (APHA), and American Society of Health-System Pharmacists (ASHP) has to say about Ivermectin and Covid [some edits included, emphasis added, full text at link]:

https://www.pharmacist.com/Practice/COVID-19/APhA-Joint-Statement-on-the-Use-of-Ivermectin-for-COVID-19

The American Medical Association (AMA), American Pharmacists Association (APHA), and American Society of Health-System Pharmacists (ASHP) strongly oppose the ordering, prescribing, or dispensing of ivermectin to prevent or treat COVID-19 outside of a clinical trial.

Ivermectin is approved by the U.S. Food and Drug Administration (FDA) for human use to treat infections caused by internal and external parasites. It is not approved to prevent or treat COVID-19.

We are alarmed by reports that outpatient prescribing for and dispensing of ivermectin have increased 24-fold since before the pandemic and increased exponentially over the past few months. As such, we are calling for an immediate end to the prescribing, dispensing, and use of ivermectin for the prevention and treatment of COVID-19 outside of a clinical trial.

The U.S. Centers for Disease Control and Prevention (CDC) and the FDA have issued advisories indicating that ivermectin is not authorized or approved for the prevention or treatment of COVID-19. The National Institutes of Health, World Health Organization, and Merck (the manufacturer of the drug) all state there is insufficient evidence to support the use of ivermectin to treat COVID-19. The Infectious Diseases Society of America Guidelines on the Treatment and Management of Patients with COVID-19 also recommend against the use of ivermectin outside of a clinical trial.

Use of ivermectin for the prevention and treatment of COVID-19 has been demonstrated to be harmful to patients. Calls to poison control centers due to ivermectin ingestion have increased five-fold from their pre-pandemic baseline. A recent CDC Health Alert Network Advisory recommends that healthcare professionals should counsel patients against use of ivermectin as a treatment for COVID-19, including emphasizing the potentially toxic effects of this drug, including “nausea, vomiting, and diarrhea. Overdoses are associated with hypotension and neurologic effects such as decreased consciousness, confusion, hallucinations, seizures, coma, and death.”

^^^ That's the science, not rogue doctors pushing quackery.

Please stop with the Covid disinformation.

Bill

 

 

 

It’s disrespectful to the OP for me to continue on this off topic tangent, so I will make this my last post here since I’ve nothing to contribute to the original post. But FWIW, medical trials in this country exist if someone is willing to pay for them. Ivermectin, alas, is too cheap. 
https://journals.lww.com/americantherapeutics/fulltext/2021/08000/ivermectin_for_prevention_and_treatment_of.7.aspx

[prairiewindmomma]

The hydroxychloroquine that Wildflower mentions above is also known as Plaquenil. I am doubtful of it’s efficacy in treating covid but it is an absolutely wonderful first line DMARD for lupus, rheumatoid arthritis, and a lot of those nebulous autoimmune things.

It can make you blind (you need retina checkups on the regular) and it can mess with the QT rhythm of your heart and should never be used with zpacs or other Qt disrupters…but if a rheumatologist offers it to you know that about 1/3 of autoimmune people are fantastic responders to the med. It is ok for about another 1/3 and the final 1/3  don’t respond. 

[Pawz4me]

1 minute ago, madteaparty said:

It’s disrespectful to the OP for me to continue on this off topic tangent, so I will make this my last post here since I’ve nothing to contribute to the original post. But FWIW, medical trials in this country exist if someone is willing to pay for them. Ivermectin, alas, is too cheap. 
https://journals.lww.com/americantherapeutics/fulltext/2021/08000/ivermectin_for_prevention_and_treatment_of.7.aspx

Ummm . . . my previous post linked to a current trial that's being conducted on ivermectin.

[prairiewindmomma]

4 minutes ago, Pawz4me said:

Ummm . . . my previous post linked to a current trial that's being conducted on ivermectin.

Yeah, there are a number of them (over 60) going right now. OHSU and UTSA are the two I know the most about just because of connections, but it’s not an unstudied drug.

Of the drugs you mention, I support the monoclonal antibody. If I get covid, that’s my game plan with my medical team. It ain’t perfect, but it works best if you get it by day 5 of symptoms.

[Spy Car]

12 minutes ago, madteaparty said:

It’s disrespectful to the OP for me to continue on this off topic tangent, so I will make this my last post here since I’ve nothing to contribute to the original post. But FWIW, medical trials in this country exist if someone is willing to pay for them. Ivermectin, alas, is too cheap. 
https://journals.lww.com/americantherapeutics/fulltext/2021/08000/ivermectin_for_prevention_and_treatment_of.7.aspx

It was disrespectful from the get-go to bring in quack Covid treatments.

Never should have happened. But you can't stop yourself.

Bill

[Spy Car]

13 minutes ago, Plum said:

We looked into IVM when we were looking for anything that might help. I think BusyMom can decide for herself and ask her Health Dept friend.
 

We asked the Pharmacy Director at the hospital where Dh worked what he thought about it. He didn’t think it would help BECAUSE they tried it early on in high doses on severe patients and they stopped because they didn’t think it helped and Remdesivir came along. There was a local hospital (the one that is connected to the CDC here) that prescribed it for outpatient use. It’s been tried. I’m not convinced it works but I’m not willing to shut down all conversation about it. It’s best to take prescription advice from your doctor and not people on the internet anyway. Which I have no doubt BusyMom knows.  

What doesn’t help is calling it horse dewormer and completely ignoring the fact that it has been FDA approved for humans for decades. The stuff at Tractor Supply is different and is not what people who talk about IVM are referring to. Everyone here knows that, right? People will do desperate things when they are scared. 
 

It is approved for humans as a de-wormer, not as a Covid treatment.

All leading medical institutions are warning doctors not to use it for Covid.

Bill

[EKS]

1 hour ago, WildflowerMom said:

My in-laws took ivermectin, antibody infusion, and to my chagrin, hydrocloroquine.    I wasn't crazy about it at all.   I seriously was planning my fil's funeral when I found out how his covid was progressing.  Anyway, much to my surprise, they both got better quickly.  It made me realize I don't have all the answers and if I get covid, I'm open to whatever my *doc* wants to try.  I would **not** advise ever taking those meds yourself.  Ask your doctor.  So, I guess that means I'm not playing doctor, with all due respect.     

Are you talking about the Regeneron antibody cocktail?  Because that actually does work and could easily account for your in laws quick recovery all by itself.

[busymama7]

On 9/16/2021 at 3:15 PM, Jean in Newcastle said:

Physical supports:

Stress = fatigue and pain.  This can be mental stress.  This can be stress from illness.  This can be stress from not eating/drinking/exercising correctly.  (And in my case, exercising anything outside of a very narrow band of not too much and not too little.)  This can be stress from the changing seasons (my body doesn't do temperature change very easily and if I'm really fatigued, I can't keep my own body temperature at normal levels). 

So eat right.  Fruits, veggies, gluten free if possible, anti-inflammatory if possible, good sources of protein, some say no dairy but I haven't been able to sustain that), no sugar.

Drink lots.  Water mostly.  Avoid stimulants like coffee, tea etc. if possible.  It might give you a burst of energy but then your body will crash.

Don't become a semi-invalid like I did. 

Possible supplements / meds that might help:  (Do your research, preferably consult a good naturopathic doctor who takes a scientific approach and not a "Woo" approach):

vitamin C

vitamin D

B vitamins - methylated if possible

amino acids

magnesium

other electrolytes

melatonin sustained release for sleep

DHEA - is the daytime hormone that works with melatonin (but take in the morning)

Co-Q-10

Chromium

low dose naltrexone

curcumin

 

Chronic illness is not cheap. . . .

I am on most but not all of these.  I will look at the rest. 

I do not drink anything with caffeine. I've seen that vicious cycle in family members and want nothing to do with it. 

Do you have post excertional(ugh I can not figure out how to spell that) malaise? I can't do anything physical because I pay for it so dramatically.  I can sit at the table for school for two hours or so most days.  I can move around the house and cook a meal most days.  If I do more than that I will end up completely flat in bed.  I know because there is one day a week when I have to and I save up energy for it and then pay for it for at least 2 days if not more.  I don't know how to add anything that looks like exercise to that.   But I don't want to become semi invalid either.  😭. 

[busymama7]

On 9/16/2021 at 3:59 PM, prairiewindmomma said:

It was me. I cope with dark humor. ❤️
 

I am about 15 years into being seriously chronically ill, 20 years (this week!)  from my first dr prescribed full bed rest. 
 

My advice/coping tips:

1. Chronic illness is isolating. Find some ways to stay connected to friends and community. It is too easy to opt out and stay home and rest—there will be times when you literally cannot—but get out as much as you can especially when you don’t feel like it.

2. Laugh where you can. I have that British self deprecation humor going on. I have a lot of things I can’t control about my life, but my attitude is one of them.

3. Get out in the sunshine. On days I can’t walk, I try to get out for a drive. Fresh air is so important. This also goes back to not being a recluse. Most of my life is takeout/pickup these days—but the librarian walks things to my car, the small shop owner does the same….build ways to make life work.

4. Make healthy simple meals, and teach people how to help. I utilize my instant pot a lot. I have a posted menu, and a binder of recipes. Pretty much everyone in my house can step in on days I am utterly nonfunctional. I often prep meals in the am when I have energy, then uncover my pot and pop it in and turn on the instant pot in the evening. Bagged salads also get utilized a lot. 
 

5. Work through the pain. The less you move the more it builds. Build your core muscles. Build flexibility in your shoulders and hips especially. On days I cannot move my shoulders to dress myself, my husband helps me get my swimsuit on and I get in the hot tub to soak. Heat helps me.

6. Be aggressive with meds. Damage is cumulative. Stop it now, work to prevent it further. I had an early intervention program with immunology and rheumatology. It has made all of the difference. Most of the people I know who tried to avoid meds early on now have fused joints or are getting surgeries. I actually have been in remission for most of my illness.  
 

7. Adapt to what you can do. I can’t scrub with my fingers, so I use a tool and use my wrists. I can’t always lift a bottle of laundry detergent so I use pods sometimes. Most people IRL have no idea of what my daily life looks like because I just make it all work. There are things I have to rely on my family for, but like Jean, I work hard to be as independent as I can be.

8. Yes on the supplements mentioned above. Fwiw, if I could only pick 3, magnesium (the good stuff, not mag oxide) would be #1, D3 + K2 would be #2, and a good B spectrum would be #3.

Fwiw, I  also do hear a bit of depression warning signals in your posts.  I am not self aware when I am depressed. Looking back, there were times when I definitely was…and would have benefited from help. I would ask people in your circle of acquaintanceship and family for additional insight. 

What medications do you mean and what illness do you have if you want to share?  I am currently on low dose naltrexone that seemed to help at first but doesn't seem to be doing anything at the moment.  My Dr said I could go up on the dose but the one day I tried was HORRIBLE.  I felt nothing like myself. Anxious and disoriented and light headed and dizzy and oh my gosh it was awful.    Hopefully when I get into the long haul clinic they will have more idea what is going on and who/what can help. 

I live in the desert so the summer has been awful but as it cools I will try to be outside more.  Driving is iffy because sometimes it's too much for me.  

Heat definitely helps me.  We are remodeling so don't have a master bath at the moment and have an outdoor hot tub but it's currently broken. I take lots of long not showers but can't wait for the new tub to be in!

[Jean in Newcastle]

21 minutes ago, busymama7 said:

I am on most but not all of these.  I will look at the rest. 

I do not drink anything with caffeine. I've seen that vicious cycle in family members and want nothing to do with it. 

Do you have post excertional(ugh I can not figure out how to spell that) malaise? I can't do anything physical because I pay for it so dramatically.  I can sit at the table for school for two hours or so most days.  I can move around the house and cook a meal most days.  If I do more than that I will end up completely flat in bed.  I know because there is one day a week when I have to and I save up energy for it and then pay for it for at least 2 days if not more.  I don't know how to add anything that looks like exercise to that.   But I don't want to become semi invalid either.  😭. 

Yes, I definitely have exercise intolerance. The best thing I did was to get a Fitbit. I started with a baseline number (which I am too embarrassed to tell you). I now have worked up to a daily step goal that I can get to most days. 

[Jean in Newcastle]

16 minutes ago, busymama7 said:

What medications do you mean and what illness do you have if you want to share?  I am currently on low dose naltrexone that seemed to help at first but doesn't seem to be doing anything at the moment.  My Dr said I could go up on the dose but the one day I tried was HORRIBLE.  I felt nothing like myself. Anxious and disoriented and light headed and dizzy and oh my gosh it was awful.    Hopefully when I get into the long haul clinic they will have more idea what is going on and who/what can help. 

I live in the desert so the summer has been awful but as it cools I will try to be outside more.  Driving is iffy because sometimes it's too much for me.  

Heat definitely helps me.  We are remodeling so don't have a master bath at the moment and have an outdoor hot tub but it's currently broken. I take lots of long not showers but can't wait for the new tub to be in!

I didn’t think that low dose naltrexone was helping me until I accidentally missed some doses. Then I saw how it really was helping by dampening  my pain. I don’t know if it would help someone with fatigue but no pain. So for me, it helps but doesn’t erase the pain. 

[busymama7]

3 minutes ago, Jean in Newcastle said:

I didn’t think that low dose naltrexone was helping me until I accidentally missed some doses. Then I saw how it really was helping by dampening  my pain. I don’t know if it would help someone with fatigue but no pain. So for me, it helps but doesn’t erase the pain. 

Actually what it is helping with is the pain. I did also have constant muscle pain since covid.  Like feels like the flu every single day.   The LDN is helping with that.  I forget that the pain was much worse before starting.   But then it seemed to be slowly coming back but not as intense when he suggested I could go up.  I have to remind myself that as much as I'm miserable I'm not feeling that like I was. 

 

[Spy Car]

31 minutes ago, busymama7 said:

I am on most but not all of these.  I will look at the rest. 

I do not drink anything with caffeine. I've seen that vicious cycle in family members and want nothing to do with it. 

Do you have post excertional(ugh I can not figure out how to spell that) malaise? I can't do anything physical because I pay for it so dramatically.  I can sit at the table for school for two hours or so most days.  I can move around the house and cook a meal most days.  If I do more than that I will end up completely flat in bed.  I know because there is one day a week when I have to and I save up energy for it and then pay for it for at least 2 days if not more.  I don't know how to add anything that looks like exercise to that.   But I don't want to become semi invalid either.  😭. 

Post Exertional Malaise or PEM. Take this very seriously. I know you have your duties as a wife and mother, but going outside you energy envelope and crashing repeatedly is the worst thing that can happen for your health.

I understand this is not easy news to hear (or for me to give). Just try very hard not to crash.

I'm sorry.

Bill

 

 

[busymama7]

32 minutes ago, Spy Car said:

Post Exertional Malaise or PEM. Take this very seriously. I know you have your duties as a wife and mother, but going outside you energy envelope and crashing repeatedly is the worst thing that can happen for your health.

I understand this is not easy news to hear (or for me to give). Just try very hard not to crash.

I'm sorry.

Bill

 

 

I am only assuming this is what I have.  The symptoms fit.  Still waiting for approval to go to post covid clinic.  Dr I went to go referral was a jerk and not at all helpful (except he did give me the referral). 

 It assuming I am correct, I don't know what this means for me.  Do I have to stay home all the time? Not drive my kids to activities? Not go to church? Not clean or do laundry? I really can't figure out how not crashing is possible.  Just laying around all day can't be the answer, can it? 

[Spy Car]

43 minutes ago, busymama7 said:

I am only assuming this is what I have.  The symptoms fit.  Still waiting for approval to go to post covid clinic.  Dr I went to go referral was a jerk and not at all helpful (except he did give me the referral). 

 It assuming I am correct, I don't know what this means for me.  Do I have to stay home all the time? Not drive my kids to activities? Not go to church? Not clean or do laundry? I really can't figure out how not crashing is possible.  Just laying around all day can't be the answer, can it? 

For now, I'm afraid you will need to take very great care to stay within your energy envelope. That energy envelope may expand or contract, and this may fluctuate on a day to day basis and change in trends over time.

PEM crashes are likely to narrow your opportunities and are almost certain to set you back.

You will need to become the expert on how much you are able to do without provoking PEM. That will mean adopting the strategy those with ME/CFS call "pacing." When you feel you are able, do a little, then rest. But when your body tells you you ought not do an activity, then don't.

Trust me, this is horrible news to give someone and horrible news to receive. 

You have my deepest sympathies.

Bill

 

Edited September 18, 2021 by Spy Car

[Halftime Hope]

On 9/16/2021 at 8:01 PM, prairiewindmomma said:

Yeah, there are a number of them (over 60) going right now. OHSU and UTSA are the two I know the most about just because of connections, but it’s not an unstudied drug.

Of the drugs you mention, I support the monoclonal antibody. If I get covid, that’s my game plan with my medical team. It ain’t perfect, but it works best if you get it by day 5 of symptoms.

I hope that goes well for Americans. The feds, who make everything better [eye roll] are now getting involved in the distribution process.  From everything I'm hearing, the mAbs being used work well, but I'd be surprised if having the feds involved will improve access. 

 

ETA: edited the abbreviation for monoclonal antibodies to write it correctly. 

 

Edited September 19, 2021 by Halftime Hope

[Halftime Hope]

@busymama7   I've had two friends and an acquaintance who have really been helped by working with these folks:  https://covidlonghaulers.com/

Here's a short simplistic video explaining:  https://youtu.be/IvWPT3YA5uY

Here's a longer conversation with the lead researcher in the group:  https://youtu.be/TZuLLJpLObs 

Their MO is to have you do lab work to generate a "Long-hauler Index" (a report of dysregulated immune markers), get their report and recommendation, and if your own doctor is amenable, they'll consult.  If not, you can be treated by one of their doctors.  

 

 Often times, the Long COVID clinics don't really try to comprehensively treat an underlying cause. The one at the premier medical school close to me is simply taking a patient's symptoms and treating them by specialty, so it's not terribly effective. 

ETA:  The PEM fits with their monocyte activation theory, because exertion activates monocytes. 

Edited September 18, 2021 by Halftime Hope

[Spy Car]

4 minutes ago, Halftime Hope said:

@busymama7   I've had two friends and an acquaintance who have really been helped by working with these folks:  https://covidlonghaulers.com/

Here's a short simplistic video explaining:  https://youtu.be/IvWPT3YA5uY

Here's a longer conversation with the lead researcher in the group:  https://youtu.be/TZuLLJpLObs 

Their MO is to have you do lab work to generate a "Long-hauler Index" (a report of dysregulated immune markers), get their report and recommendation, and if your own doctor is amenable, they'll consult.  If not, you can be treated by one of their doctors.  

 

 Often times, the Long COVID clinics don't really try to comprehensively treat an underlying cause. The one at the premier medical school close to me is simply taking a patient's symptoms and treating them by specialty, so it's not terribly effective. 

ETA:  The PEM fits with their monocyte activation theory, because exertion activates monocytes. 

Good lord!

Not more links to the quack doctor Bruce Patterson and his bunch of whack-a-doodles who prey on the desperate.

This is pure Covid disinformation.

Don't get sucked into this scam.

Bill

 

 

 

[madteaparty]

2 minutes ago, Spy Car said:

Good lord!

Not more links to the quack doctor Bruce Patterson and his bunch of whack-a-doodles who prey on the desperate.

This is pure Covid disinformation.

Don't get sucked into this scam.

Bill

 

 

 

I really don’t know what we’d do without you commenting on every post, Bill. Every morning I wake up, I check what you posted, and then immediately put down my horse paste. Keep up the good work,please.

 

[Spy Car]

Just now, madteaparty said:

I really don’t know what we’d do without you commenting on every post, Bill. Every morning I wake up, I check what you posted, and then immediately put down my horse paste. Keep up the good work,please.

 

Shame on you for bringing Covid disinformation to this forum. You think your trolling is funny. I don't.

Bill

 

[Roadrunner]

Well the much touted and expensive remdesivir is a cat drug. 😉

https://www.google.com/amp/s/amp.theatlantic.com/amp/article/611341/

 

And some anti cholesterol drugs are also being looked at. 
 

I hope they figure out something sooner rather than later. Sorry you are still so sick after so long. 

[Halftime Hope]

34 minutes ago, madteaparty said:

I really don’t know what we’d do without you commenting on every post, Bill. Every morning I wake up, I check what you posted, and then immediately put down my horse paste. Keep up the good work,please.

 

Such a pity my friends didn't check with Bill first: his wisdom could have kept them from all the joys of improving health. Then again, they didn't consult with me, nor with each other, so it's unlikely they would have asked Bill either. 

[Spy Car]

4 minutes ago, Halftime Hope said:

Such a pity my friends didn't check with Bill first: his wisdom could have kept them from all the joys of improving health. Then again, they didn't consult with me, nor with each other, so it's unlikely they would have asked Bill either. 

It is a pity [if such "friends" actually exist] as they are getting scammed by a notorious con-man.

Bill

 

[Halftime Hope]

nm 

Edited September 18, 2021 by Halftime Hope

[Jean in Newcastle]

3 hours ago, busymama7 said:

I am only assuming this is what I have.  The symptoms fit.  Still waiting for approval to go to post covid clinic.  Dr I went to go referral was a jerk and not at all helpful (except he did give me the referral). 

 It assuming I am correct, I don't know what this means for me.  Do I have to stay home all the time? Not drive my kids to activities? Not go to church? Not clean or do laundry? I really can't figure out how not crashing is possible.  Just laying around all day can't be the answer, can it? 

Just putting this out here - but with your history of your mom and sister both having fibro. . . when did they get it?  I mean, you do have a possible genetic tendency there.

As far as the rest, no one can answer - even doctors can't answer what it's going to mean long term.  I have ebbed and flowed over the years - more recently I've ebbed more than flowed.  I find that I need to force myself to do a certain amount - but not too much.  I've learned the hard way that not doing anything at all actually leads to more pain and more fatigue even if that doesn't seem like it would.  (When I became a semi-invalid it was actually by following the advice of a very well meaning doctor.)  For me, being able to do more was possible as I reduced stressors on the body.  As my immune system was shored up, I learned strategies to deal with stress and I had the best habits that I could have, then I gained a bit more wiggle room. 

The following answers are for me (YMMV of course):

Staying home all the time?  No.  But I can do one or two days of errands/activities and that's it.  Even then it's grown over the years.  I used to be able to only do one errand / one day.  Now I can do a couple of errands / a couple of days (but not back to back). 

Drive kids to activities?  I was able to do that.  But I rested in the car. 

Church?  I was able to do Sunday morning but not evening services.  Having the option of online services on bad days has been a godsend for me.

Cleaning?  Well, my house is dirty.  It's better than it was before but it's been a struggle.  At my very worst it took me three hours to vacuum a medium size living room and then I was in bed for three days afterwards.  I cried.  (I'm better than that now but I'm also an empty nester now. . . )  My kids also helped some but they had their own schoolwork etc. so they couldn't do it all for me.  At one point I did hire a house cleaner.

Laundry?  I have a smaller family than you do.  But we did laundry together and it helped.

I have learned to feel the signs of a crash coming.  Often if I stop right then I can avoid the actual crash.  But sometimes I can feel it coming and push forward anyway.  And sometimes I don't see/feel it coming and Bam! it hits me. 

Just a note on experimenting with treatments.  I've done some weird things.  All it did was line the pockets of those offering the treatments.  (I've also taken Ivermectin - for humans - for parasites - just one more thing we were trying to rule out as a possible hidden cause for my immune problems.  I don't have the bandwidth to enter the fray on that for Covid, but I will caution you that it messes big time with your gut flora and gut flora can be very important to your immune system and for energy.  I work very hard to build up and maintain my gut flora.) 

Another note:  I don't often give "advice" to people because all of this is so individual.  Also - the longer you deal with this kind of thing, the more well-meaning but clueless people are there to offer up what they read in an article, or heard somewhere or that their Aunt Mabel had tried.  I  don't want to do that.  (But you did ask, so here I am offering post after post of what worked for me with YMMV caveats attached.)

[Halftime Hope]

8 minutes ago, Jean in Newcastle said:

Just putting this out here - but with your history of your mom and sister both having fibro. . . when did they get it?  I mean, you do have a possible genetic tendency there.

As far as the rest, no one can answer - even doctors can't answer what it's going to mean long term.  I have ebbed and flowed over the years - more recently I've ebbed more than flowed.  I find that I need to force myself to do a certain amount - but not too much.  I've learned the hard way that not doing anything at all actually leads to more pain and more fatigue even if that doesn't seem like it would.  (When I became a semi-invalid it was actually by following the advice of a very well meaning doctor.)  For me, being able to do more was possible as I reduced stressors on the body.  As my immune system was shored up, I learned strategies to deal with stress and I had the best habits that I could have, then I gained a bit more wiggle room. 

The following answers are for me (YMMV of course):

Staying home all the time?  No.  But I can do one or two days of errands/activities and that's it.  Even then it's grown over the years.  I used to be able to only do one errand / one day.  Now I can do a couple of errands / a couple of days (but not back to back). 

Drive kids to activities?  I was able to do that.  But I rested in the car. 

Church?  I was able to do Sunday morning but not evening services.  Having the option of online services on bad days has been a godsend for me.

Cleaning?  Well, my house is dirty.  It's better than it was before but it's been a struggle.  At my very worst it took me three hours to vacuum a medium size living room and then I was in bed for three days afterwards.  I cried.  (I'm better than that now but I'm also an empty nester now. . . )  My kids also helped some but they had their own schoolwork etc. so they couldn't do it all for me.  At one point I did hire a house cleaner.

Laundry?  I have a smaller family than you do.  But we did laundry together and it helped.

I have learned to feel the signs of a crash coming.  Often if I stop right then I can avoid the actual crash.  But sometimes I can feel it coming and push forward anyway.  And sometimes I don't see/feel it coming and Bam! it hits me. 

Just a note on experimenting with treatments.  I've done some weird things.  All it did was line the pockets of those offering the treatments.  (I've also taken Ivermectin - for humans - for parasites - just one more thing we were trying to rule out as a possible hidden cause for my immune problems.  I don't have the bandwidth to enter the fray on that for Covid, but I will caution you that it messes big time with your gut flora and gut flora can be very important to your immune system and for energy.  I work very hard to build up and maintain my gut flora.) 

Another note:  I don't often give "advice" to people because all of this is so individual.  Also - the longer you deal with this kind of thing, the more well-meaning but clueless people are there to offer up what they read in an article, or heard somewhere or that their Aunt Mabel had tried.  I  don't want to do that.  (But you did ask, so here I am offering post after post of what worked for me with YMMV caveats attached.)

Jean, you have written out such detailed and helpful posts. Thank you for sharing...it's like being able to attend a masterclass.  

[ElizabethB]

Hugs.

I would get all your vitamin levels tested if you have not yet had them tested, including things they don't normally look for like D, B12, magnesium, etc. 

I have read several articles about how the microbiome (the gut health Jean was talking about) changes after Covid, especially for people with long covid. Here is one:

https://www.webmd.com/lung/news/20210113/peoples-microbiomes-might-influence-covid-19-severity-study#1

The things you need to eat for gut health are healthy anyway, Google improving gut health for a variety of ideas. 

I would take at least a week totally off, get true rest. Hire some help to do chores, let some things go, totally rest up while eating for gut health and taking the things Jean recommended. Eat gut healthy things, some typical flu choices like chicken noodle soup and a lot of liquids. Get the groceries delivered. Have the children do chores and cook. Teach a bit from the couch, have the children bring their books. Listen to a lot of audiobooks, watch some educational YouTube videos.

[madteaparty]

5 hours ago, Roadrunner said:

Edited September 18, 2021 by madteaparty

[Halftime Hope]

6 hours ago, ElizabethB said:

Hugs.

I would get all your vitamin levels tested if you have not yet had them tested, including things they don't normally look for like D, B12, magnesium, etc. 

I have read several articles about how the microbiome (the gut health Jean was talking about) changes after Covid, especially for people with long covid. Here is one:

https://www.webmd.com/lung/news/20210113/peoples-microbiomes-might-influence-covid-19-severity-study#1

The things you need to eat for gut health are healthy anyway, Google improving gut health for a variety of ideas. 

I would take at least a week totally off, get true rest. Hire some help to do chores, let some things go, totally rest up while eating for gut health and taking the things Jean recommended. Eat gut healthy things, some typical flu choices like chicken noodle soup and a lot of liquids. Get the groceries delivered. Have the children do chores and cook. Teach a bit from the couch, have the children bring their books. Listen to a lot of audiobooks, watch some educational YouTube videos.

So @ElizabethB and @Jean in Newcastle have both mentioned gut health.  Would each of you mind sharing your top five or top ten biome-boosting interventions?  I'm at about three or four, but I'm sure improvements can be made.  I'm trying to think of changes as a way of life, not as temporary prescriptions. TIA! 

[happi duck]

Many (hugs)

[PeterPan]

2 hours ago, Halftime Hope said:

top five or top ten biome-boosting interventions?

I had mcs (chemical sensitivities) and CFS for years and the way we reversed it (with a nutritionist, whom I used for 10+ years) was working on gut health:

-no red meat

-no cheese

-no white flour

-yes follow rules of food combining

-yes eat a wide variety of foods to input the nutrition

-yes fruit

-yes dried fruit

-yes organic

Florastor came out later or I just didn't know about it, but wow what a tool. In the context of those other things (to improve gut motility), great stuff. Back then, we were doing things like small amounts of cayenne to stimulate gut healing. But florastor is much easier, lol.

I probably should have started thyroid meds way before I did. I do *not* test as having antibodies for thyroid, but I lived under high tension power lines that destroyed my health. I've been doing HBOT lately, which feels (subjectively obviously) like it's healing not only my concussions but some of the damage and lack of clarity from the power line/EMF exposure. At our old house, living under that, I would walk 5 minutes on level ground (with a timer) and come in and crash on the floor. My armpit basal temps at that time were 95.3 or 95.6, I forget. I was so, so sick. I started homeschooling dd's K5 when we moved, and I spent the start of that year in bed, horizontal, putting her books in dish pans to read together while I rested. Dd now says I'm a horrible teacher because I was so hands off, just handing her things, haha. Her ACT scores were phenomenal but I'm a terrible teacher. Whatever. God gives significant grace.

Fwiw, while this is not op's situation necessarily, I had trauma experiences that were making my gut not work well. The trauma stores in the PSOAS, which is a muscle that wraps around/through your lower abdomen. As we did the trauma work, that area released and I began having normal bowel movements (sorry, tmi). Before that, I struggled even with so much attention to nutrition to have good bm. Like I'd have to drink hot water, take extra dried fruit, massage the ICV, on and on. Once we resolved the trauma, boom the works started working. 😄 

Another tool we didn't have at the time that now we have is affordable genetics. For $69 you can run the cheapest 23andme and get a large searchable text file that you can run through other sources to customize your growth. Some of what was holding me back was using trial and error for supplements rather than being able to target them with knowledge of the genetics. Once I got the genetics, it was such a lightning bolt, so much better. I have scars from common injuries (burn while cooking, etc.) because I was SO nutritionally deficient despite taking all the supplements ($$$$$$) that this alternative type doctor (osteopath, not a chiro or something) was recommending. He's still in practice btw and presumably still dangerous. I did chelation, had my amalgams out, drank green junk, tried juicing, all the normal things people do sigh. 

That covidlonghaulers site is kind of interesting and I'm going to look into it. I found some info (when I was researching for other reasons) on 13 genes associated with poor outcomes in covid, ie. which people are most likely to have the cytokine storms. They're using this data to work BACKWARD, because if you can identify the gene driving the overreaction, you can then target it with a medication know to work for that problem. I doubt it's one problem one answer for everyone. But some of the genes had super high correlation, occurring say in 59% of the hospitalizations. And that was a major collaborative study (Johns Hopkins, big names, universities), not fringe. I'm pretty sure a friend of mine who just passed was homozygous for one of those genes and that's why her trajectory was so fast and rough. And it doesn't seem like an incredible extrapolation to say those same genes could be involved in a propensity to long haul or a propensity to side effects from the vaccines. 

My own experience with the vaccine (which I've had the first of, Moderna) has been pretty rough. I'm continuing to have inflammation 3 weeks later, even though it's decreasing, and I started some Florastor yesterday, just to see if working on the gut could clean up anything. We'll see. I do think (subjectively) it may be helping. 

There are some other things the nutritionist had me do for gut health, some of which I still do when I get around to it. We would juice a lemon fresh every morning or night and drink that diluted with water. Acidity is an issue with the gut so I think it was for that balance. She would sometimes do a push of sorts with cranberry juice or pomegranate (very strong stuff!) or a mixture. I will occasionally do that. She tended to use food medicinally, intentionally, and every meal and snack was scripted out. I did this for many years, sigh. So a thing that might have a small amount of useful nutrients could be made more potent by eating with intentionality. It was sort of the inverse of what most people do. Most people think wellness is about avoiding, and to her it was putting it IN. So eating for the nutrients, eating for what it would do for you. The food combining was just a way of organizing it to make things digest more easily. I was so weak that if I didn't food combine, the fatigue of digesting left me horizontal for a week. 

Now I cruise, work out, lift weights, all sorts of things. But that's how it was. Not fun, btdt. I can understand why it would be hard to know what to do first. 

Edited September 18, 2021 by PeterPan

[PeterPan]

So just for your total trivia, this nutritionist was so, so keen on KALE. All hail the kale, superfood, blah blah. Well it turns out you can buy kale FROZEN!! For real. Kroger has it in the freezer section, organic, very nice. Walmart has it too, but theirs just isn't as nice. 

Normal dose was 1 ½ cups, lightly steamed, and you can do that 4+ days a week as part of a starch meal (food combining). I had someone write me ones about vitamins and she was being told to buy this $$$ vitamin that supposedly was all these food source vits, and I'm like HELLO EAT THE FOOD!!! But that apparently was too hard to her.

Now it can be easy. You just buy the kale frozen. I don't think it's gonna cure long haul, but just for general wellness and filling you up with good things, there you go. I throw it under a bowl of brown rice pasta for my Sunday lunch, yum. 

[Jean in Newcastle]

2 hours ago, Halftime Hope said:

So @ElizabethB and @Jean in Newcastle have both mentioned gut health.  Would each of you mind sharing your top five or top ten biome-boosting interventions?  I'm at about three or four, but I'm sure improvements can be made.  I'm trying to think of changes as a way of life, not as temporary prescriptions. TIA! 

I like Renew Life Ultimate Flora probiotics. They are in the refrigerated section (if they carry it) or if you order it, it comes with an ice pack. 
 

Flaxseed.   I love my gluten free flaxseed muffins. I also mix flaxseed into unsweetened  applesauce. 

Being gluten free and sugar free 

Fermented foods (though I personally have a bit of trouble with these)

Cruciferous veggies (including kale)

some say kombucha but I don’t feel like I can combine kombucha with low dose naltrexone (might be wrong on that)

drink lots of water. 
 

walking actually helps your digestive system. 
 

some people benefit from taking digestive enzymes. I did for awhile when things were worse. 
 

As a springboard from this- new symptoms in anyone- even after something like Covid should trigger a general health screening. Getting any blood sugar issues or thyroid issues identified and treated is crucial. (Part of the whole identifying physical stressors thing that I mentioned earlier). Also checking for vitamin and mineral deficiencies. 

If you look at symptom lists for fibromyalgia you will find that it’s a very long list. 

[ktgrok]

14 hours ago, Halftime Hope said:

I hope that goes well for Americans. The feds, who make everything better [eye roll] are now getting involved in the distribution process.  From everything I'm hearing, the McAbs being used work well, but I'd be surprised if having the feds involved will improve access. 

 

Yeah, totally we should leave it up to the free market, and I'm sure that won't benefit the wealthy and urban. 

[ktgrok]

You definitely should be contacting someone who diagnoses and treats fibromyalgia. I mean, you sound classic for it, and you have relatives with it, and illness can trigger it. So...it may be fibromyalgia, not Covid specifically, that you are dealing with. 

[Halftime Hope]

2 hours ago, PeterPan said:

I had mcs (chemical sensitivities) and CFS for years and the way we reversed it (with a nutritionist, whom I used for 10+ years) was working on gut health:

-no red meat

-no cheese

-no white flour

-yes follow rules of food combining

-yes eat a wide variety of foods to input the nutrition

-yes fruit

-yes dried fruit

-yes organic

Florastor came out later or I just didn't know about it, but wow what a tool. In the context of those other things (to improve gut motility), great stuff. Back then, we were doing things like small amounts of cayenne to stimulate gut healing. But florastor is much easier, lol.

I probably should have started thyroid meds way before I did. I do *not* test as having antibodies for thyroid, but I lived under high tension power lines that destroyed my health. I've been doing HBOT lately, which feels (subjectively obviously) like it's healing not only my concussions but some of the damage and lack of clarity from the power line/EMF exposure. At our old house, living under that, I would walk 5 minutes on level ground (with a timer) and come in and crash on the floor. My armpit basal temps at that time were 95.3 or 95.6, I forget. I was so, so sick. I started homeschooling dd's K5 when we moved, and I spent the start of that year in bed, horizontal, putting her books in dish pans to read together while I rested. Dd now says I'm a horrible teacher because I was so hands off, just handing her things, haha. Her ACT scores were phenomenal but I'm a terrible teacher. Whatever. God gives significant grace.

Fwiw, while this is not op's situation necessarily, I had trauma experiences that were making my gut not work well. The trauma stores in the PSOAS, which is a muscle that wraps around/through your lower abdomen. As we did the trauma work, that area released and I began having normal bowel movements (sorry, tmi). Before that, I struggled even with so much attention to nutrition to have good bm. Like I'd have to drink hot water, take extra dried fruit, massage the ICV, on and on. Once we resolved the trauma, boom the works started working. 😄 

Another tool we didn't have at the time that now we have is affordable genetics. For $69 you can run the cheapest 23andme and get a large searchable text file that you can run through other sources to customize your growth. Some of what was holding me back was using trial and error for supplements rather than being able to target them with knowledge of the genetics. Once I got the genetics, it was such a lightning bolt, so much better. I have scars from common injuries (burn while cooking, etc.) because I was SO nutritionally deficient despite taking all the supplements ($$$$$$) that this alternative type doctor (osteopath, not a chiro or something) was recommending. He's still in practice btw and presumably still dangerous. I did chelation, had my amalgams out, drank green junk, tried juicing, all the normal things people do sigh. 

That covidlonghaulers site is kind of interesting and I'm going to look into it. I found some info (when I was researching for other reasons) on 13 genes associated with poor outcomes in covid, ie. which people are most likely to have the cytokine storms. They're using this data to work BACKWARD, because if you can identify the gene driving the overreaction, you can then target it with a medication know to work for that problem. I doubt it's one problem one answer for everyone. But some of the genes had super high correlation, occurring say in 59% of the hospitalizations. And that was a major collaborative study (Johns Hopkins, big names, universities), not fringe. I'm pretty sure a friend of mine who just passed was homozygous for one of those genes and that's why her trajectory was so fast and rough. And it doesn't seem like an incredible extrapolation to say those same genes could be involved in a propensity to long haul or a propensity to side effects from the vaccines. 

My own experience with the vaccine (which I've had the first of, Moderna) has been pretty rough. I'm continuing to have inflammation 3 weeks later, even though it's decreasing, and I started some Florastor yesterday, just to see if working on the gut could clean up anything. We'll see. I do think (subjectively) it may be helping. 

There are some other things the nutritionist had me do for gut health, some of which I still do when I get around to it. We would juice a lemon fresh every morning or night and drink that diluted with water. Acidity is an issue with the gut so I think it was for that balance. She would sometimes do a push of sorts with cranberry juice or pomegranate (very strong stuff!) or a mixture. I will occasionally do that. She tended to use food medicinally, intentionally, and every meal and snack was scripted out. I did this for many years, sigh. So a thing that might have a small amount of useful nutrients could be made more potent by eating with intentionality. It was sort of the inverse of what most people do. Most people think wellness is about avoiding, and to her it was putting it IN. So eating for the nutrients, eating for what it would do for you. The food combining was just a way of organizing it to make things digest more easily. I was so weak that if I didn't food combine, the fatigue of digesting left me horizontal for a week. 

Now I cruise, work out, lift weights, all sorts of things. But that's how it was. Not fun, btdt. I can understand why it would be hard to know what to do first. 

What an journey, and so much work!  I hope your recovery (all of the things you are working on) continues very nicely.  

[ElizabethB]

It's really individual what will help and what won't. My issues are tied into food allergies as well, that makes it harder. If you have pollen or animal allergies, the Covid could have triggered food allergies. If so, an elimination diet may help. You feel worse in the short run but then better in the long run, your body reacts badly to the withdrawal of foods you are allergic to.

For some people gluten free and dairy free really helps, that helped my brother, I went gluten free for 6 months, no difference for me. My brother can now eat gluten again after resetting his system for a few years. Nightshades also are bad for some people and eliminating them can help if you are sensitive to them.

You could start with a 3 day veggie smoothie fast, that helped me 20 years ago when I was on a strong anti-biotic after being exposed to TB and have to take a crazy strong anti-biotic for 6 months. (That was prior to my food allergies.) I just used a regular blender at the time, there were not the fancy blenders available today. I limited the fruit, I think I had a bit of fruit in them but I don't remember.

Wild game for meat or grass fed may help. Fermented foods may help. 

Digestive enzymes and probiotics helped until I became allergic to them. I am going to try a new probiotic but every 5 days, anything I eat daily I become allergic to, I'm on a 5 day rotation diet. Since I can't tolerate many vitamin or mineral formulations and get bad reactions to them, I occasionally get IV vitamins, they are helpful for me but may not be needed if you can take regular vitamins. They do act faster than normal vitamins so could help.

A good functional medicine type doctor can help but there are also quacks out there. 

 

[busymama7]

Thank you for all the advice.  I can't respond to everyone individually.  

Yes chances are high it is fibromyalgia.  I was headed that way 7-8 years ago but was able to get on top of it with natural thyroid, bioidentical hormones and watching blood levels of vitamins etc.  I really was doing very well until covid.   Now looking at the symptoms, while they do overlap a lot, my symptoms do see to be CFS more than fibromyalgia.   What I've read is pain vs fatigue can be there difference and I feel like my fatigue is worse than my pain. I do have some pain though 

I feel like my Dr has been really helpful but I want to see what the covid clinic knows/thinks plus get more workup like a cardiologist before exploring more like functional medicine.   I am just sad and annoyed that my previous attempts at avoiding chronic illness (while giving me a good 6 years will few issues) has been swept away dramatically by covid infection.  I still hold hope that there will be something specific to covid that can either be resolved or treated or will heal in time either way. 

Oh diets. Yeah so I was in a really good place there. Eating very healthy etc. I had lost over 40 lbs   But the lack of energy since covid has made doing what I was doing before impossible and I've gained back 30 😢.  It's just survival mode.  I know I would feel better if I could get my diet cleaned up but doing that feels impossible.  Strict elimination type diets were overwhelming even when I was better.  I struggle to wrap my head around how in the world to tackle that at this stage.  

[ktgrok]

Oh, I hadn't realized you hadn't seen a cardiologist yet. Definitely need that - need to rule out cardiomyopathy which would contribute to fatigue. 

Hugs. 

[EKS]

17 hours ago, Halftime Hope said:

McAbs

I'm assuming that you don't mean to be offensive with this abbreviation, but...

The actual abbreviation for "monoclonal antibody" is mAb.

[PeterPan]

4 hours ago, Jean in Newcastle said:

drink lots of water. 

gene NBPF3 affects b6 and leads to dehydration. So even drinking "lots" of water for normal person levels could be under for some people's needs. I'm homozygous for the defect, and I go through a conspicuous amount of water.

[ElizabethB]

I would hire someone to cook for you for a week, get a bunch of healthy freezer meals built up for you.

Alternatively, you could go to Whole Foods and buy things from their hot meals, buy a few weeks worth of different healthy things and freeze.

Or, older children cook healthy for you.

If you combine an elimination diet with a rotation diet of weird foods you have never eaten, it's actually fairly easy. You can also try to have a skin test if you suspect food allergies. I'll post how to later.

[Halftime Hope]

22 minutes ago, EKS said:

I'm assuming that you don't mean to be offensive with this abbreviation, but...

The actual abbreviation for "monoclonal antibody" is mAb.

That's what middle of the night typing does to one...I should have stayed with spelling it out, apparently.  :-)   

If anyone takes it as an offense, that's on them.  (Honestly, I'm pretty sure I've seen four letters in various abbreviations, but the full name is just fine.) 

ETA:  No disrespect intended, if that's what you wondered. It's part of our plan for early treatment should we ever need it -- just talked to our doctors about it. 

Edited September 18, 2021 by Halftime Hope

[ElizabethB]

I would start with eating healthy and totally resting, after shopping or hiring or supervising cooking, totally rest up, not just half rest, and eat well for 2 weeks. Get friends and family to help or hire things out. 

Here is how to eat healthy while testing an elimination diet:

Try it for 10 days and see if it helps. The only seasoning you can use during this process is salt, also only plain water. You can have coffee but no sugar or milk in it.

For example:

Day 1: eat only sweet potatoes, buffalo, a fruit and veggie you don't eat often.

Day 2: couscous, quail, different fruits and veggies you don't eat often

Day 3: jicama, venison, different fruits and veggies you don't eat often

Day 4: squash as a starch, watermelon or cantaloupe (same food family as squash), pork or another meat you don't eat more than 3X a week

Repeat day 1 after day 4. Each of your fruits and veggies on the different days should be different and not from the same food family. If you decide to try it, you can post your choices and I'll tell you if any of them are in the same family. Some weird fruits to try, get them at asian or Mexican grocery stores: jackfruit, starfruit.

If any of those starches are things you eat more than 2x a week, let me know and I'll give you alternative starches. This is also a good healthy gut diet that should also reduce inflammation.