How did a Long Hauler COVID Clinic help you?

Posted by joannemm34293 @joannemm30809, Jun 5 8:23am

Well I waited over 6 months to go to a long hauler covid clinic in Central Florida and I'm very disappointed after my first and only appointment with this doctor.

I read so many reviews that she was working diligently and I'm sure she is with long hauler patients so I made an appointment since I've been sick for 2.5 years with many neurological and sensory and cardio and autonomic nervous system symptoms that are debilitating for 2.5 years now.

Well my first appointment after waiting 6 months was this past week. I told her that my husband and I both became deathly ill in late November 2019 along with many other people not only in America but around the world who became deathly ill with symptoms that absolutely 100% mimic covid yet the doctors at that time were not aware of it so they label it as a unknown upper respiratory virus. I was tested for the flu and pneumonia and it was all negative at that time but I could hardly breathe and had to go on albuterol and I had severe fatigue and brain fog and fever and dry hacking cough that lasted 2 months yet since there was no covid test at that time I was just labeled as having an upper respiratory virus of unknown origins and the same for my husband.

I explained all this to her and told her since that virus which I believe was covid and if you read reviews from around the world many many people were deathly ill in November and December of 2019 and many of us fully believe 100% it was covid. Yet the world was only told about this virus in January of 2020 only one and a half months after many of us became very very ill.

The doctor told me that it could not have been covid in late November 2019 because the first diagnosed patient in America was in I believe she said either December 2019 or early January 2020. I don't understand this just because a patient in America was the supposedly the first one diagnosed with covid in either December 2019 or January 2020 that that would exclude everybody else that was deathly ill one or two weeks prior to that supposed first diagnosed covid patient in America.

So basically after I gave her all of my debilitating symptoms which is kept me from even holding down a job for 2.5 years and I've been chronically sick and in bed a lot of times not able to function and my quality of life has gone to dirt she dismissed all of the symptoms and told me that they basically could not be from covid because of course as mentioned the first diagnosed covid patient in America was not until about 2 weeks or 3 weeks after my husband and I were deathly sick and Augusta Georgia.

So after waiting 6 months thinking I had some hope that a doctor would dig into this matter because I truly 100% believe as time passes by many of the doctors will have to awaken to the fact and the truth that covid was circulating way before January 2020. In fact many of the people who have come forward in China said that the virus was circulating in the summer of 2019 into the fall of 2019 and with the massive travel around the world people coming in and out of America thousands and thousands by the day from China there's no doubt in my mind my husband and I had covid yet not one doctor will recognize that and try to help me.

Therefore with hitting roadblock after roadblock after roadblock with doctors basically shutting off their ears to watch so many patients are telling them I am just washing my hands of it all. I will go to my grave being deathly ill fully knowing that all these neurologists and cardiologist and endocrinologist and primary care doctors have their nose firmly adhere to the wall and will not acknowledge or research or try to help patients that have never recovered and have heart issues or breathing issues or severe chronic fatigue or neurological autonomic nervous system malfunctioning etc and just because this supposed patient in America for the first patient in America that was diagnosed with covid was several weeks after my husband and I were sick yet the flu test was negative and pneumonia was negative so the doctors back then just diagnosed us as undetermined upper respiratory virus and I had to be put on albuterol and spiriva just to breathe when I've never had breathing problems and I've had many flu bugs in my day I'm 62 years old and I've had many many many cold viruses and flu viruses and I've never ever ever had those severe debilitating symptoms.

So once again I've been brushed to the side and was told last week that since my second covid diagnosis in March where I was tested for covid and it was positive and I had to have a monoclonal infusion that with that test showing covid in March of 2022 which I had the same exact symptoms in March 2022 as I had in November 2019 that she had to go by the March 2022 symptoms which showed nothing new except for more fatigue so that was the only symptoms she would work off of and she told me I should be gaining my strength and feeling better in a short time. She would not listen that I've been chronically fatigued for 2.5 years since the initial November 2019 virus. So I was sent on my way out the door with not even a follow-up appointment

I am washing my hands completely with all these doctors in America. This is absolutely disgraceful but you know what the truth will be told and I may not be alive to see it or hear it but the truth will be told that so many of us patients from around the world, not just America, who got a severe virus in the end of 2019 that we actually did have covid yet none of the doctors are willing to recognize that and try to help us. And of course it's brushed off as anxiety and stress and go on an antidepressant go on an anti-anxiety medicine go see a psychiatrist etc and I'm fed up with hearing that too.

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

@joannemm30809 I am very sorry about your experience and the outcome not being as supportive as you had hoped. I know she didn't offer a follow up appointment, or acknowledge that your first experience with what you believe could've been COVID was possible given the U.S. timeline, however, I wonder what information she did pass to you for next steps?

Have you considered exploring Chronic Fatigue Syndrome?

Chronic Fatigue Syndrome: https://www.mayoclinic.org/diseases-conditions/chronic-fatigue-syndrome/symptoms-causes/syc-20360490

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@amandajro

@joannemm30809 I am very sorry about your experience and the outcome not being as supportive as you had hoped. I know she didn't offer a follow up appointment, or acknowledge that your first experience with what you believe could've been COVID was possible given the U.S. timeline, however, I wonder what information she did pass to you for next steps?

Have you considered exploring Chronic Fatigue Syndrome?

Chronic Fatigue Syndrome: https://www.mayoclinic.org/diseases-conditions/chronic-fatigue-syndrome/symptoms-causes/syc-20360490

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I never had any of these debilitating autonomic nervous system or neurological symptoms until after that virus in late November 2019.
Fatigue really is the least of my worries with all these symptoms I have. It's definitely to me what focuses more on the autonomic nervous system with my heart rate going fast for no reason and I get visual disturbances and pins and needles in the extremities and sensory overload sensory shift almost like a fight or flight adrenaline rush going through my body and I'm heat and exercise intolerant now etc etc.

She just told me to not overdo myself and to take it slow which I have been doing for 2.5 years now My entire lifestyle is come to a grinding halt And she told me to take vitamins which I have been doing. I've been doing all of that. I eat healthy I do not drink alcohol I do not smoke cigarettes I exercise I eat plenty of greens and vegetables and I drink tons of water and take vitamins and I don't know what else these people think I'm not doing. All they want to do is brush it off on anxiety or depression or chronic fatigue. From the multiple of symptoms that I have fatigue is the least of my worries and the least debilitating of my problems.

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@amandajro

@joannemm30809 I am very sorry about your experience and the outcome not being as supportive as you had hoped. I know she didn't offer a follow up appointment, or acknowledge that your first experience with what you believe could've been COVID was possible given the U.S. timeline, however, I wonder what information she did pass to you for next steps?

Have you considered exploring Chronic Fatigue Syndrome?

Chronic Fatigue Syndrome: https://www.mayoclinic.org/diseases-conditions/chronic-fatigue-syndrome/symptoms-causes/syc-20360490

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Hi @joannemm30809, building on what @amandajro just mentioned I was wondering if you’ve seen any of the videos @rwinney has posted with Dr Sletten, of Mayo Clinic Pain Rehabilitation Center.
There is interesting information on Central Sensitization Syndrome and so many of your symptoms parallel some of his discussion. There are several discussions on the subject in our forum.
I scanned through some of your previous comments and I’m not sure if you have visited these discussions. But they may help point you in the right direction to being able to cope with your symptoms. There are quite a few people who have great success in working with the Mayo Pain Rehabilitation Clinic.
https://connect.mayoclinic.org/comment/714478/
https://connect.mayoclinic.org/discussion/has-anyone-been-diagnosed-with-central-sensitization-if-so-id-like-to/
https://connect.mayoclinic.org/discussion/mayo-pain-rehabilitation-program/

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I'm not sure why if you've been diagnosed with covid, symptoms that you continue to have should not be addressed. I mean we don't know what causes long covid so making it (covid) the criteria for treating chronic symptoms should not leave you with no place to turn. But do not rule out another diagnosis. BTW, I can relate on a little different level in that I have exactly the same symptoms as long covid sufferers, but mine started a year after having covid. BTW, did you ever get an anti-body test after your symptoms in November 2019 and before your positive test in March of 2022? I suggest you might call Northwestern University where their focus is treating symptoms:

"If you were diagnosed with COVID-19 or experienced its symptoms, whether you were hospitalized or not, you can be seen in the Neuro COVID-19 Clinic through a telehealth visit. Dr. Koralnik and his team will investigate, diagnose and manage neurological symptoms for patients affected by the illness. They have also launched studies that will help influence the care of people who have neurological complications of COVID-19 in the future."

“The disease can affect people in different ways, and we personalize treatment based on their symptoms,” Dr. Koralnik says. For example, in some people, respiratory distress can affect the amount of oxygen going to the brain. In others, the virus can directly infect the brain or nerves, or it can cause an overreaction in the immune system that can cause neurological damage.

The disease can affect people in different ways, and we personalize treatment.
— Igor Koralnik, MD

If you were diagnosed with COVID-19 or experienced its symptoms, you can be seen in the Neuro COVID-19 Clinic through a telehealth visit.

To make an appointment, please call 312.695.7950.
Infectious Disease
Neurosciences
Functional Movement Disorders Program At Northwestern Memorial Hospital Featured Experts

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@loribmt

Hi @joannemm30809, building on what @amandajro just mentioned I was wondering if you’ve seen any of the videos @rwinney has posted with Dr Sletten, of Mayo Clinic Pain Rehabilitation Center.
There is interesting information on Central Sensitization Syndrome and so many of your symptoms parallel some of his discussion. There are several discussions on the subject in our forum.
I scanned through some of your previous comments and I’m not sure if you have visited these discussions. But they may help point you in the right direction to being able to cope with your symptoms. There are quite a few people who have great success in working with the Mayo Pain Rehabilitation Clinic.
https://connect.mayoclinic.org/comment/714478/
https://connect.mayoclinic.org/discussion/has-anyone-been-diagnosed-with-central-sensitization-if-so-id-like-to/
https://connect.mayoclinic.org/discussion/mayo-pain-rehabilitation-program/

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I would second Dr Sletten's CSS videos. I was diagnosed with CSS after my 2nd Covid vaccine. CSS can be triggered by any infection, viral infection, vaccines etc. It is your body's nervous system going in to hyperdrive and staying there as a response. The good thing is may long haulers have similar symptoms and they are starting to receive funding for more Indepth research. What you are feeling is not in your head, you just have to find the right doctor that can put all the pieces together. Hang in there.

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Joanne, I'm sorry to hear that your experience with a Post Covid Care Clinic was not helpful for you. I know others have had found help at a PCCC.

All,
Here is the link to Dr. Sletten's video on Central Sensitization Syndrome referred to in the discussion:

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I am a patient at The Mayo Clinic for post covid myelitis. I had to learn to stand, walk, etc ( wheelchair, walker, cane ) I experience proprioception issues, gait, pins and needles and numbing trunk/ lower legs. I can now ambulate on my own, some days better than others.
I am also experiencing knee and ankle pain. I did fall and fracture cuboid and the base of the third metatarsal and two ankle sprains. Lower back pain as well. I've been attending PT – both neurological and ortho.
Is there a possibility for me to be seen at the Post Covid Care Clinic?

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Please try to be seen at Mayo ! I've been treated for 3 weeks and I feel like a different person!

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@amandajro

@joannemm30809 I am very sorry about your experience and the outcome not being as supportive as you had hoped. I know she didn't offer a follow up appointment, or acknowledge that your first experience with what you believe could've been COVID was possible given the U.S. timeline, however, I wonder what information she did pass to you for next steps?

Have you considered exploring Chronic Fatigue Syndrome?

Chronic Fatigue Syndrome: https://www.mayoclinic.org/diseases-conditions/chronic-fatigue-syndrome/symptoms-causes/syc-20360490

Jump to this post

She just told me to take vitamins and to get plenty of rest and to eat healthy and to distress. Things that I already know and I've read over and over again and I'm doing. But that was it. I had my hopes up for almost 8 months and I go there and I was sent out on my way.

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@remnant1

Please try to be seen at Mayo ! I've been treated for 3 weeks and I feel like a different person!

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I have had the same experience at the Mayo Long Covid Clinic. All of my symptoms boiled down to brain inflammation that sends out signals to different parts of my body that they hurt or that I can't breathe etc. Through the wellness program I have made some progress with the physical side of Long Covid. The cognitive part is taking much longer. Next week it will be 12 wks out for me since my visit there.

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@joannemm30809

She just told me to take vitamins and to get plenty of rest and to eat healthy and to distress. Things that I already know and I've read over and over again and I'm doing. But that was it. I had my hopes up for almost 8 months and I go there and I was sent out on my way.

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I am so sorry to hear that. I was having a bunch of problems too but, none of them would show up on tests. Are you in the same situation?
Jill

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@jill1972

I am so sorry to hear that. I was having a bunch of problems too but, none of them would show up on tests. Are you in the same situation?
Jill

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Yes. Almost three years of non-stop testing of every kind you can think of, probably a million dollars put out by my insurance company and my bank account combined and we're still at square one, The only test that I pushed for for 2.5 years was a small fiber neuropathy skin biopsy that my neurologist finally agreed to do after me begging and begging and pushing him to do that small fiber biopsy test and they took three biopsies of my left leg one up at my hip one at my mid thigh and one down by my ankle and the one at my ankle and my mid thigh came back negative and the one at my hip came back positive for small fiber neuropathy but they only test one leg instead of doing both cuz both legs have been affected by all these neurological symptoms from pins and needles sharp stabbing pains numbness racing heartbeat visual disturbances bowel disturbances muscle twitching from head to toe etc

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