IT, can you share
-
Oh man, that's tough. So sorry to hear about this, IT. I hope MS continues to improve.
-
Thanks for asking, Brenda. So .... back in Sept 2020 we got hit by C19. We immediately got our doctors together, both here and in AZ, to coordinate treatment -- two internal medicine docs, plus an immunologist and a pulmonary specialist -- who agreed to the protocol of antivirals, antibiotics, and breathing treatments, steroids, and a variety of supplements. The steroids had to be updosed after a few days to clear up the respiratory issues.
I had a very short bout -- 3 or 4 days of fatigue and brain fog, and then lingering dry mouth which is still ongoing but dissipating. Biotene works well for that.
MS got hit harder -- she had total loss of taste and smell, in addition to the brain fog and fatigue, and a whole host of dysautonomia symptoms. Positional orthostatic tachycardia, unregulated blood pressure and heart rate, unregulated body temperature, irregualr sleep patterns, etc. This is still all on-going for her. She began to recover some percent of taste and smell, but the 2nd vax dose seems to have triggered the relapse, which has been disheartening. We've been working with an electro-cardiologist and specialists in dysautonomia to figure out how to help the body recover -- significant uptake in salts, slanting the bed (constant gravity helps POTS), and exercising to regain autonomic functions.
She's valiant, but fights food dissociation -- she has to eat texturally to have any shred of enjoyment -- and battles constant fatigue, depression, and other burdens. She's getting a few tastes back -- cinnamon, garlic, some acids, strong cheeses, etc. and is working on smell and taste retraining.
The weird thing is that we have both constantly tested negative for C19.
The boys are fine. We're just adapting to our new normal.
@ivorythumper said in IT, can you share:
Thanks for asking, Brenda. So .... back in Sept 2020 we got hit by C19. We immediately got our doctors together, both here and in AZ, to coordinate treatment -- two internal medicine docs, plus an immunologist and a pulmonary specialist -- who agreed to the protocol of antivirals, antibiotics, and breathing treatments, steroids, and a variety of supplements. The steroids had to be updosed after a few days to clear up the respiratory issues.
I had a very short bout -- 3 or 4 days of fatigue and brain fog, and then lingering dry mouth which is still ongoing but dissipating. Biotene works well for that.
MS got hit harder -- she had total loss of taste and smell, in addition to the brain fog and fatigue, and a whole host of dysautonomia symptoms. Positional orthostatic tachycardia, unregulated blood pressure and heart rate, unregulated body temperature, irregualr sleep patterns, etc. This is still all on-going for her. She began to recover some percent of taste and smell, but the 2nd vax dose seems to have triggered the relapse, which has been disheartening. We've been working with an electro-cardiologist and specialists in dysautonomia to figure out how to help the body recover -- significant uptake in salts, slanting the bed (constant gravity helps POTS), and exercising to regain autonomic functions.
She's valiant, but fights food dissociation -- she has to eat texturally to have any shred of enjoyment -- and battles constant fatigue, depression, and other burdens. She's getting a few tastes back -- cinnamon, garlic, some acids, strong cheeses, etc. and is working on smell and taste retraining.
The weird thing is that we have both constantly tested negative for C19.
The boys are fine. We're just adapting to our new normal.
Crappy virus, with symptoms all over the place. Take heart in George's daughter's experience...It's been a long road for her, too, but things eventually turned around. Here's praying that your wife's turning point is soon.
-
What an ordeal for MS and your family. Hopefully she is on the road to full recovery now. Your case is the third time this past week I have heard of patients who tested negative despite having all the symptoms and more. Our nephew was the same.
All we can hope is this mess starts winding down following the wave this latest variant - Omicron. We are all so fed up with it and the disruption it brings.
-
Wow.
Sharing in everyone else's concerns, IT. I hope it's just a matter of time. -
I'll pile on here, thanks for the update and prayers for improvements as time goes on. I'm not smart enough to understand everything you described about her, so forgive me but is she open to participating on this forum? I sure would love to see her name pop up in threads again (as I'm always glad when I see yours, IT).
-
same as everybody else is saying!!! :couple_with_heart:
-
Thank you for sharing, IT. It's a hard story to share, and the reality of living it has to be so much worse. You will be in our prayers. Please keep us posted on how things are going. This is not just a conversational phrase, I really want to know.
Hugs to all of you.
-
We appreciate all the love, prayers, concern, and support. It certainly has changed our pattern -- we rarely go out to dinner since MS really can't enjoy the food, and planning meals for the family is a balance of the needs of the kids and what she might find palatable on any particular day. I had never thought much about the senses of taste and smell, and had no idea you could lose them like going blind or deaf. It's all bizarre. We're hope for small improvements...
Thanks again for your concern!
-
We appreciate all the love, prayers, concern, and support. It certainly has changed our pattern -- we rarely go out to dinner since MS really can't enjoy the food, and planning meals for the family is a balance of the needs of the kids and what she might find palatable on any particular day. I had never thought much about the senses of taste and smell, and had no idea you could lose them like going blind or deaf. It's all bizarre. We're hope for small improvements...
Thanks again for your concern!
@ivorythumper said in IT, can you share:
we rarely go out to dinner since MS really can't enjoy the food
Yes. This is a real thing, and a huge problem. D2 lost 25 lb at the peak. Now, 14 months later, she's still struggling, but slowly, slowly improving.
No-nos include bacon, carbonated beverages.
Everything has to be spicy, or it tastes like cardboard (which is better than tasting like rotting meat).
Is this what MS is experiencing?
"Now look here, you Baltic gas passer... " - Mik, 6/14/08
The saying, "Lite is just one damn thing after another," is a gross understatement. The damn things overlap.
-
@ivorythumper said in IT, can you share:
we rarely go out to dinner since MS really can't enjoy the food
Yes. This is a real thing, and a huge problem. D2 lost 25 lb at the peak. Now, 14 months later, she's still struggling, but slowly, slowly improving.
No-nos include bacon, carbonated beverages.
Everything has to be spicy, or it tastes like cardboard (which is better than tasting like rotting meat).
Is this what MS is experiencing?
@george-k said in IT, can you share:
@ivorythumper said in IT, can you share:
we rarely go out to dinner since MS really can't enjoy the food
Yes. This is a real thing, and a huge problem. D2 lost 25 lb at the peak. Now, 14 months later, she's still struggling, but slowly, slowly improving.
No-nos include bacon, carbonated beverages.
Everything has to be spicy, or it tastes like cardboard (which is better than tasting like rotting meat).
Is this what MS is experiencing?
Very much so. There is also this weird phenomenon where smells and tastes get mixed up, and always with repulsive associations.
-
@ivorythumper said in IT, can you share:
we rarely go out to dinner since MS really can't enjoy the food
Yes. This is a real thing, and a huge problem. D2 lost 25 lb at the peak. Now, 14 months later, she's still struggling, but slowly, slowly improving.
No-nos include bacon, carbonated beverages.
Everything has to be spicy, or it tastes like cardboard (which is better than tasting like rotting meat).
Is this what MS is experiencing?
@george-k said in IT, can you share:
@ivorythumper said in IT, can you share:
we rarely go out to dinner since MS really can't enjoy the food
Yes. This is a real thing, and a huge problem. D2 lost 25 lb at the peak. Now, 14 months later, she's still struggling, but slowly, slowly improving.
No-nos include bacon, carbonated beverages.
Everything has to be spicy, or it tastes like cardboard (which is better than tasting like rotting meat).
Is this what MS is experiencing?
No bacon?
