Yes , you said it we are like Guinea pigs they are testing things out on us, without regard that we are human beings and we have families and that our families are suffering along with us. When we it end.

I appreciate the frustration with being given meds that do not produce the relief one is seeking, but I do not think applying the term "guinea pig" is appropriate nor is suggesting people not take their meds. I fully understand if one feels left on their own but that is different than categorically and broadly criticizing as I know of some long covid patients that in fact have received relief from (new) medications given based on specific testing . I am open to suggestions as to how long covid can be addressed and have a particular interest in what is going on with these clinics in terms of being a clearinghouse and what their particular role is in advancing treatment and research.

In 22 months, I have experienced two one week periods of feeling like myself again. These episodes did not last. Now, I am, also, working through constipation/diarrhea problems and shortness of breath after exertion (PEM) as bad as ever. I am sick of going to doctors who don't do anything so have not revisited the Pulmonologist or Cardiologist. I carry OTC oxygen which seems to help temporarily with episodes of SOB - wonder why when nothing is wrong with my lungs?

I am working remotely with a post-Covid clinic. Their prescription reflects the same treatment that I have been practicing on my own - pace myself and gradually increase exercise. Hard to do when any upright exercise brings on SOB. I do my own yoga/abdominal routine lying down everyday.

In the meantime, I have developed shoulder pain - was up all night with it and have a fractured knee which is being treated with time and a knee brace. I'm waiting for a call from the doctor about my shoulder right now. I feel like my body is collapsing around me.

Anyone have any other ideas?

Thanks -