Is this the answer to LT Covid sufferers? Doc sent me this info

Posted by summerof42 @summerof42, Dec 12, 2023

I am working with a Doc who supposedly treats LT Covid patients. I am a sufferer now for an unbearable 3 yrs! What started as minor symptoms is now ove 40+ horrific symptoms, leaving me unable to function and I can't even get LT Disability through work. If you research my history of posts, you will see all my horrific symptoms and I've developed even more since. Right now, I'm suffering from 3 chronic eye conditions that developed, leaving my eyes in excruciating pain (like needles stabbing them) bloodshot and drainage. I'm now down to 83 lbs with skin on bones and no one will help as I lay here in such pain. Prior, I was so very health and active and full of life and felt like I was 18 yrs young even though I'm in my 60's. That life is gone now.

Anyways, as I tried to work with this new MD he sent me the link below and said the product had extensive clinical research studies with Mount Sanai, patents, etc. He said it's supposed to help with it all from depression to pain brain fog, etc. I'm a very cautious person and always leery and afraid to try it. PLEASE LET US KNOW IF ANYONE HAS TRIED IT!

https://pubmed.ncbi.nlm.nih.gov/36252151/https://www.businesswire.com/news/home/20210413005424/en/Endourage-Begins-Human-Clinical-Trial-to-Test-If-Proprietary-Hemp-Flower-Formulation-Eases-Symptoms-of-Post-Acute-COVID-19-Syndrome

Interested in more discussions like this? Go to the Post-COVID Recovery & COVID-19 Support Group.

I am 72 years old. I originally developed Covid 19 in Belize while on a missions trip in December 2019. Of course Covid was not yet a recognized illness, so I was diagnosed with pneumonia in the left lobe of my lungs. Symptoms were a horrific productive cough, fatigue that lingered. Fast forward to June 2019, I contracted Covid 19 a second time. It attacked my body in areas I’d had injuries, or prior weak areas. The first symptom was pain in my ankle where I’d had surgery to repair a broken tibia and fibulla in 2003. Next symptom was loss of urinary control, walking to the bathroom feeling no sense of urgency, it would be like someone turned the faucet on and it wasn’t me. I’d been treated for a UTI two weeks prior to Covid. I had extreme low back pain, which was an area I’d seen a chiropractor for in the past occasionally.
Post Covid the cough lingered a few weeks. But, 3 weeks later I developed lymphedema, starting with swollen feet, leading to swollen calves, eventually hitting my knees which affected mobility. I was referred to our local lymphedema clinic in 7/22. After treatment I now wear knee high compression stockings daily, and use a compression pump with thigh high boots each night after dinner. I did 5 months of PT once I got the swelling under control to strengthen my knees and improve my range of motion in my arms. I gained 60 pounds in 6 months post Covid in 2022, which I haven’t been able to get off, despite eating gluten free and my usual go to Weight Watchers.

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I need to make a correction! Title should read, LT Covid Doc sent me this product info, not Doc sent me product.

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@pat814

I am 72 years old. I originally developed Covid 19 in Belize while on a missions trip in December 2019. Of course Covid was not yet a recognized illness, so I was diagnosed with pneumonia in the left lobe of my lungs. Symptoms were a horrific productive cough, fatigue that lingered. Fast forward to June 2019, I contracted Covid 19 a second time. It attacked my body in areas I’d had injuries, or prior weak areas. The first symptom was pain in my ankle where I’d had surgery to repair a broken tibia and fibulla in 2003. Next symptom was loss of urinary control, walking to the bathroom feeling no sense of urgency, it would be like someone turned the faucet on and it wasn’t me. I’d been treated for a UTI two weeks prior to Covid. I had extreme low back pain, which was an area I’d seen a chiropractor for in the past occasionally.
Post Covid the cough lingered a few weeks. But, 3 weeks later I developed lymphedema, starting with swollen feet, leading to swollen calves, eventually hitting my knees which affected mobility. I was referred to our local lymphedema clinic in 7/22. After treatment I now wear knee high compression stockings daily, and use a compression pump with thigh high boots each night after dinner. I did 5 months of PT once I got the swelling under control to strengthen my knees and improve my range of motion in my arms. I gained 60 pounds in 6 months post Covid in 2022, which I haven’t been able to get off, despite eating gluten free and my usual go to Weight Watchers.

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Forgot to mention that I started on CBD/ CBG combination that I was led to try for inflammation relief. It’s only 1/2 dropper taken sublingually first thing in the morning. I have prayed for wisdom and direction for myself and my doctors as the road to recovery of Long Covid is complicated. I’d do the same if I were you. What do you have to lose. Do you trust your doctor? You can always stop it if you experience adverse effects.

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@summerof42 When we are desperate, we will reach out for any help - I know because I have been there.
So, wanting to know what to say to you about this product which is unfamiliar to me, I went reading, looking for any scientific studies about Endourage Formula C.
Here is what I learned - there have been 2 small studies using it. People from the company were involved (doesn't disqualify the info, just makes me more cautious.) Be wary when studies cite major medical centers - it may merely mean some of the patients were recruited there. Places like Mayo Clinic and Mount Sinai never endorse commercial products.
Endourage may be the MOST expensive CBD/Hemp flower preparation I have ever heard of $169.95 per bottle!
What you may want to look at other studies of CBD oil use in Long Covid - there are a lot of them, but I can't immediately cite any that fit your symptoms.
Good luck finding answers on this unwelcome journey - I understand because my daughter is still experiencing some symptoms after being severely infect in early 2020.
Sue

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@sueinmn

@summerof42 When we are desperate, we will reach out for any help - I know because I have been there.
So, wanting to know what to say to you about this product which is unfamiliar to me, I went reading, looking for any scientific studies about Endourage Formula C.
Here is what I learned - there have been 2 small studies using it. People from the company were involved (doesn't disqualify the info, just makes me more cautious.) Be wary when studies cite major medical centers - it may merely mean some of the patients were recruited there. Places like Mayo Clinic and Mount Sinai never endorse commercial products.
Endourage may be the MOST expensive CBD/Hemp flower preparation I have ever heard of $169.95 per bottle!
What you may want to look at other studies of CBD oil use in Long Covid - there are a lot of them, but I can't immediately cite any that fit your symptoms.
Good luck finding answers on this unwelcome journey - I understand because my daughter is still experiencing some symptoms after being severely infect in early 2020.
Sue

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Hi Sue,
Thanks for chiming in with your valuable input! To be honest, NO, I don't trust this doctor who's with Ascension Hospital in Franklin, WI, especially now, after I also researched the CBD. No real contact info and when I input their address it shows a dump-type strip mall! This doctor claimed to be a pro in working with LT Covid patients, but truly has provided no help, other than to say, take Amitriptyline. When I told him because of my age (68 yrs now) I am concerned about this drug because many medical documents reiterate the dangers in prescribing for anyone over 60 yrs, fainting, etc and my bones are so fragile and he just brushed it off and wouldn't discuss.
I now NEED to be on LT Disability which I have coverage for at work through private insurance, but he refused to fill out the paperwork correctly and tells me I need to pursue PT, physc eval, etc. I can't even leave my house I'm in such pain and can no longer drive. All he needs to do is write in my current state of health, unable to thrive as an adult, my symptoms and unable to work, but he won't do it. I have blister-like painful rashes, skin turns bright pink all day followed my nerve pain, ear pain tinnitus, etc.

I have now become so debilitating with over 40+ symptoms and unable to function and in such excruciating pain everywhere. New symptoms rear their ugly head every month since I first became ill with Covid in '20. It's ravishing my body! All because of no medical support, which includes going to Mayo where I saw an Internal MD, who basically offered a trial Rx, made me feel worse and I tried to reach out to him and he refuses to call me.

I'm alone and scared and slowly passing and now weigh in at 83 lbs from 127 lbs. My newest symptoms are 3 very painful chronic eye conditions. My eyes feel like needles are stabbing them, very red burning and drainage and I can no longer drive. Even as I type, my eyes are burning! In addition, I developed the terrible internal trembling, spasms in my chest and stomach which is unbearable 24/7, especially immediately upon awakening int the morning.

I so alone and scared. I pray every day My Dearest Lord hears me and helps me.

I'm sorry to hear about your daughter and can relate and so glad she has your support. I have no one and have seen so many specialists and no one can help me. Neuro said I now test for an immune disorder, try Gabapentin which made things worse! Gastro said I have the spams and try Amitriptyline.

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What a nightmare you are going through! My heart goes out to you.
I’ve been in this thing for almost two years. I’ve lost over thirty pounds, so I know what you mean. It’s so strange, some of us are losing weight, and some gaining!
What are “the spams”? That’s a new one for me.
Sending good wishes and prayers to all who are suffering ❤️

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@dloos

What a nightmare you are going through! My heart goes out to you.
I’ve been in this thing for almost two years. I’ve lost over thirty pounds, so I know what you mean. It’s so strange, some of us are losing weight, and some gaining!
What are “the spams”? That’s a new one for me.
Sending good wishes and prayers to all who are suffering ❤️

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The spasms is like "internal trembling," there are several posts regarding this symptom on this forum for Covid. It's so horrible and unbearable. And my stomach feels like there's a COBRA snack wrapped around it squeezing me to death! I had an endoscopy done AGAIN and the Gasto doc said he could see my esophagus contracting. There is no cure and said could try "Amitriptyline" but he's an idiot, as they all are. Any doctor should know per medication per documentation you can't prescribe it for 60+ due to severer risks and side effects. I'm 68 yrs.

When I confronted him, he said, "well, then there's nothing else I can do." They just done care!

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@summerof42

The spasms is like "internal trembling," there are several posts regarding this symptom on this forum for Covid. It's so horrible and unbearable. And my stomach feels like there's a COBRA snack wrapped around it squeezing me to death! I had an endoscopy done AGAIN and the Gasto doc said he could see my esophagus contracting. There is no cure and said could try "Amitriptyline" but he's an idiot, as they all are. Any doctor should know per medication per documentation you can't prescribe it for 60+ due to severer risks and side effects. I'm 68 yrs.

When I confronted him, he said, "well, then there's nothing else I can do." They just done care!

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Hi summer
You might consider his suggestion. My sister takes amitriptyline for digestive issues and she is eighty. It makes her much more comfortable. I believe they worry it might cause falls in older people. Sometimes these things are worth a try. Remember you can always stop if it doesn’t help you.

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I’m wary of any contentions of cures. If they lack real backing, I’m skeptical. I suppose some meds help with symptoms. I’m trying to avoid too many meds. I already take a few, plus vitamins and supplements.

I hope you can find something that helps you. I am so curious about the internal trembling. I had it again this morning. What causes it? Is it anxiety?

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No. I have not tried that..

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