Can our doctors call Mayo long haul clinic to guide and help us?

Posted by letuslivehelpus1 @letuslivehelpus1, Dec 3, 2023

I was just wondering since not all of us can afford mayo and our Insurance won't pay for it can our pcps and drs call mayo LG clinic to get us help and guiandance so we can be treated?! We deserve to live too. We all do.

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

Forlorn Theressa | @theressa | Dec 12, 2023

In reply to @colleenyoung "Interesting that the SurvivorCorps website is no longer being maintained. Thanks for letting me know." + (show)

Survivorcorps lost their funding.

gsgambhir | @gsgambhir | Dec 12, 2023

In reply to @pat814 "Me. I have posted my long Covid journey a few times." + (show)

Hi @pat814 appreciate your response. I just read your post. Indeed sending my best wishes and prayers to you Sir. I read about Dr. BRUCE Patterson on one of these forums. I have reached out to them through their website. If they reply, we may go for his treatment. Shot in the dark. I can imagine several LC patients here might have already traveled that path.

beachbum | @arichards3 | Dec 13, 2023

In reply to @rose5 "I can not believe your doctor!!!! I’m so mad. To me, he should be reported. Obviously..." + (show)

@rose5 Agree, given the thousands and thousands of people having symptoms associated with the booster or having COVID, medical professionals saying its in our mind or denying there is a connection is disappointing, maddening, and just wrong.

One thing learned in my recovery. Self advocate - there is no one waking up in the morning with the thought "how can I help (fill in your name) this person get better". In this case, fire your Doctor and find someone that will help you sort things out!

jeannef | @jeannef | Dec 13, 2023

In reply to @arichards3 "Are you on Medicare? I am 67 and was very well covered at Mayo." + (show)

Yes

kentkemmerling1949 | @kentkemmerling1949 | Dec 13, 2023

I have been dealing with what has been diagnosed as Long Haul COVID, but was rejected by the Mayo Clinic program and one here in Indiana. I have been so dizzy and off balance since I recovered back in Dec. 2020 that I couldn't exercise much. Last week I went to an ENT for some ear checks and he mentioned if I had considered "normal pressure hydrocephalus". I had not, but am familiar with the disease since my father passed away from it and it was a terrible death. I am going for a screening for this problem just after Christmas and hoping that is the problem since there is a surgical repair that has a high success rate.

Colleen Young, Connect Director | @colleenyoung | Dec 13, 2023

In reply to @gsgambhir "Hi @colleenyoung thank you for moderating the groups and for your contributions by assisting members with..." + (show)

@gsgambhir, to find other people with similar symptoms, I suggest using the Search function in the Post-COVID Recovery support group. Here's how:

1. Go to the Post-COVID Recovery support group's page https://connect.mayoclinic.org/group/post-covid-recovery-covid-19/
2. Enter a search term, i.e., "Muscle Pain"
3. Click Enter.

Here are the results I got for "Muscle Pain" https://connect.mayoclinic.org/group/post-covid-recovery-covid-19/?search=Muscle+Pain#discussion-listview
4. You can sort by Discussions (18) or Comments (208)

Try different search terms to find the discussions that you wish to take part in.

annewoodmayo | @annewoodmayo | Dec 14, 2023

In reply to @arichards3 "Your Paxlovid comment is interesting. While I am feeling better I am not full recovered. My..." + (show)

HI arichards3,

I took Paxlovid for an active Covid infection, my second bout of it.
It was not prescribed for Long Covid for me.

The Paxlovid also reduced my autoimmune disease symptoms for a few weeks. It was blessed relief. Two of my doctors told me the same thing: They didn't know why it helped the autoimmune disease so much, and they couldn't prescribe it for any disease other than active Covid since Paxlovid is so new.
Good luck to you!

beachbum | @arichards3 | Dec 14, 2023

In reply to @annewoodmayo "HI arichards3, I took Paxlovid for an active Covid infection, my second bout of it. It..." + (show)

@annewoodmayo My go forward plan is to never be COVID boosted again. The rules for prescribing Paxlovid have changed (from only when you have COVID to have it available with you) and my tactic when I travel internationally if I come down with a serious case of COVID I will be carrying Paxlovid as a 'pill in the pocket' ready to take wherever I am.

Remains to be seen if my Mayo Doctor prescribes it to 'nuke' any remaining symptoms after completing my Mayo program.

annewoodmayo | @annewoodmayo | Dec 15, 2023

In reply to @arichards3 "@annewoodmayo My go forward plan is to never be COVID boosted again. The rules for prescribing..." + (show)

HI arichards3,

Keep us posted about the Mayo doc and paxlovid "nuking", please. 🙂

Good to know about the new rules for Paxlovid. Thanks!

I'm curious about your decision not to get vaxed for Covid in the future. I've read that the latest recommended shot is not really a booster per se, but that it is a new vaccine to combat the most recent strain of Covid -- like how the flu shot is "new" every year.

Would you have time to explain your thinking on this topic? Have you had a bad reaction to a Covid shot in the past?

Thanks very much!!

beachbum | @arichards3 | Dec 15, 2023

In reply to @annewoodmayo "HI arichards3, Keep us posted about the Mayo doc and paxlovid "nuking", please. :) Good to..." + (show)

@annewoodmayo My first Moderna booster was November 2021 and within a couple of weeks I began to experience my first Long COVID symptoms. My LC was caused by the booster thus my decision to never be boosted again. When I posed the question "how many people have said to you, my LC was caused by the vaccine?", Mayo professionals said "many".

The only time my Wife and I had COVID was July 2022.

My lack of trust in future vaccinations isn't a slam on medical professionals and medical science, but there hasn't been true scientific study of causes of Long COVID, medical professionals are trying their best to help. I don't think there will ever be true scientific study because that isn't where the money is.

Merry Christmas and I wish you the best,

Art