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

Survivorcorps lost their funding.

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.

@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!

Yes

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.

@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.

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!

@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.

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!!

@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