New to this and already so frustrated.

Posted by sprudlow @sprudlow, Feb 3 10:19am

Hello fellow sufferers, I am new to the group. I have recently found out about Long COVID. For the past two years I have been experiencing shortness of breath, dizziness with standing and moving to quickly, sleeping 15-36 hours straight, memory issues (brain fog), irritability anxiety, oh the list goes on as you all know. I'm in remission from Crohn's thanks to a total colectomy and have type 2 diabetes. I was moved to work overnights due to staffing issues and am working 40-50 hours a week and my body cannot handle the hours at work and symptoms I am having. As I start walking this walk I find it very discouraging. I am still working but now looking for a new job due to hours and with the memory issues, fatigue etc I am afraid I will not be able to find a job I can do. Seeing how I live alone I have looked into some disability, however after filling out the "paperwork" they inquire about my financial state then suggest bankruptcy. The majority of my debt is my school loan and I cannot file bankruptcy on that. Just went through a bad bout of dehydration and had a long talk with my primary care Dr, and she is working on getting me a referral to the U of MN for a Long COVID specialist, and she scheduled a head CT scan, which was clear. So I am lucky to have her in my corner, now if I can only afford the tests. Which like most of you have stated you pay all this money for the Dr's tests and they still cannot tell you what is wrong, "oh lets try this test next". Yes I am frustrated and venting (sorry about that). I am looking forward to reading more from you all and learning more about this and just maybe even soaking up some positivity and strength form you. Thank you for your time and understanding.

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

Be encouraged, we are here.

I do not know your background, education, such, but I can tell you of a job/work I believe you can do if you are or can become organized. Organization is the key. Journal daily, work and personal, medical. One journal each. Record times, what was said, this related to work and medical journals. I am suggesting you consider being USDA Organic Certification Initial Reviewer. You have to get training and be certified. The method of work, post Covid, is much of the work done off-site, at your home. You take jobs as you can and are able. You need a computer and internet service. Certification agents/agencies are in place (each has training and has to apply each year for renewal of license) which hire independent initial reviewers. If you are good some hire individuals (benefits possible and a big positive). There are many other positions within the sector, as you improve, if you desire to advance.

Look up the string of words:

USDA National Organic Program, initial reviewer, training

I would suggest you visit with, by email, a certification agency. Many, if not most, need help. We work with Natures International Certification Services (they have parent company I know, but name will not come to me). I would suggest emailing the email address on their website. We do all our work with this company and have been with them many years, pushing near two decades of interaction. Good people. Nothing is perfect though as we all know.

This would give you an opportunity to work at your ability, from home, and increase work load as able or needed.

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Check my comments to others. I have written on a number of topics and things which may be helpful to you.

My "Covid profile" is:
12 Covid and long Covid events, 3 pulmonary embolisms, 5 DVTs or SVTs, Covid Viral Reactive Arthritis for now 13 months with no remission, heavy steriod use, elequis daily, blood profiles and metrics all out of wack due to immobility, sterdiods, DVT, PE, and SVT, anger, agitation, depression, frustration, extreme pain, loss of short term memory, impact on long term memory, extreme attention absence, weight loss, weight gain, muscle atrophy, GI problems of digestion, absorbtion, sexual dysfunction, variable good to high blood pressure, variable heart rate, susceptibility to other viral diseases, switching (transposing) letters, numbers, words, fact switching (memory switches information on thoughts, discussions, writing), face with name of person switching (terible symptom), inability to do anything significant muscularly as this seems to accentuate the memory and attention symptoms, hearing loss, tenitis in left ear, taste impact, smell impact, eye clarity impact, neuropathy (feet), and others forgotten.

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Doctors.

I am so glad your PCP is in your corner. You need one doctor who listens and works with you.

Long Covid research groups, doctors focusing on Long Covid or Covid, etc... I wish you the best. My experiences have not been good. There is a post which discusses this between myself and another Mayo participant. Maybe, it will be different.

Guinea pig is the best results I can say I have had outside of two doctors, one my personal physician (PCP).

You are going to have to interact with others by phone, sites like this, text, email, and in person. This is where all the treatments which have made a modest to significant impact for myself have developed or been found.

Traditional medicine, so far, has not provided solutions to the core problem: Sars CoV-2 impact on the human body. The doctors try to treat symptoms, in effect, for the most part and not the causation.

New research, published in refereed good journals, has shown that Long Covid sufferers have persisting low levels of virus somewhere in their body. The small intestine is a usual location. The impacts of this latter on serotonin production, regulation upstream and down by the Vegas nerve in the brain, and the digestive nervous system are very significant and symptoms caused by these anomolies, absent the Sars CoV-2, are parallel with symtoms of Long Covid. The virus impact on the autonomous nervous system is significant as well as various organ functions depending on the sufferer. The cardio, arterial, and vein/capilary system can be severely impacted. The capilaries and veins are or become "porous" due to the virus impact causing sites for clots and leakage impacting heat rate, blood pressure, and again the clots.

This discussion can go on. The point is, the virus has to be killed and purged and for those with Long Covid, our immune system is not able to get this done in many cases. The pattern is infection from the virus, Covid, Long Covid, absence of recovery before another infection occurs.

I am an extreme case per Long Covid research group doctors, doctors working with Covid, hematologist, immunologist, ENT, and so on. This is said to express the number of doctors I have worked with and the level of Long Covid and frequency they are examining.

Be prepared to wait. I am in three groups. I am still waiting to see the neurologist from the first group (this month) from getting accepted into the group May 2023. The second group entry visit was pending in late October. There was an issue when the appointment time was to occur and the appointment was resceduled to May 29, 2024. Yesterday, they resceduled to July 27, 2024. The third group we are in the process of a first appointment being set.

The doctors are not all sympathetic. Many are not nice, mean in some cases, apathetic, or just going through motions because they are inundated.

The medical sector of doctors has "moved on" generally, and as I visit doctors in whom I am in care, some change from initial postions of good doctor treating symptoms and seeking causal source to apathtic or worse by then no longer considering Covid as impirtant or related and just want to treat as if Covid was not a factor.

This has been my experience over the last 24 months. Some doctors refuse to see me saying they can do nothing.

It is like the "hypersensitive" medical sector response to Covid has hit chronic fatigue and is divesting itself from the issue.

Yes, there are some really good doctors out there, but they are inundated with people like us and have no room or appointments are a year out, more or less.

Again, this is why you have to become your own researcher, advocate, and activist patient.

We are all here for you and we will all work together for our health and future.

There are solutions I have experienced, but the doctors mostly downplay, ignore, or .... lost word... (do not believe what responses are).

The solutions are in plants: food such as specific vegetables [(proper preparation - heat, too much heat, freezing, etc... cause partial impact loss, total loss, or subverted effect)], plant oils, plant minerals, plant phytochems, herbs, spices, and derived supplements. Plant part, maturity or not mature, plant mineral nutrition (plant had proper nutrition while growing), raw, steamed, roasted, grilled, volume, frequency are all important aspects to use of these plants.

I have seen minor to significant improvement and in some symptoms disappearance of the cause and symptom (s).

Organic versus non organic is not the key. The above mentioned in the prior paragraph is the key (s).

Send me questions as you like. It is my obervation, short of heart impact such as atrial or ventrical fibrulation or flutter, I have experienced moat all symptoms.

May God be with you, Amen.

Jt

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@cropdoc

Be encouraged, we are here.

I do not know your background, education, such, but I can tell you of a job/work I believe you can do if you are or can become organized. Organization is the key. Journal daily, work and personal, medical. One journal each. Record times, what was said, this related to work and medical journals. I am suggesting you consider being USDA Organic Certification Initial Reviewer. You have to get training and be certified. The method of work, post Covid, is much of the work done off-site, at your home. You take jobs as you can and are able. You need a computer and internet service. Certification agents/agencies are in place (each has training and has to apply each year for renewal of license) which hire independent initial reviewers. If you are good some hire individuals (benefits possible and a big positive). There are many other positions within the sector, as you improve, if you desire to advance.

Look up the string of words:

USDA National Organic Program, initial reviewer, training

I would suggest you visit with, by email, a certification agency. Many, if not most, need help. We work with Natures International Certification Services (they have parent company I know, but name will not come to me). I would suggest emailing the email address on their website. We do all our work with this company and have been with them many years, pushing near two decades of interaction. Good people. Nothing is perfect though as we all know.

This would give you an opportunity to work at your ability, from home, and increase work load as able or needed.

Jump to this post

I have been looking into jobs I can do at home online, but I will definitely look into this and look into your words of advice to others. I really appreciate your responses to me and your honesty, I was starting to feel like I was losing my mind and the thought of being 53 and having to start all over again is very overwhelming. Being a single parent with a daughter with a Borderline Personality Disorder age 23 still living with me and struggling with life herself. You have made it clear that this is going to be a battle with a lot of closed doors, but for me I have to get ready for this battle and fight for me for once. As discouraging as this do I dare say disease is, with everyones struggles and frustrations with the medical field, it is encouraging to hear from people like you who have been fighting this fight and continue on fighting. Thank you again for your honesty, wisdom and words of encouragement. You have helped give me the kick in the butt I needed today to prepare and move forward. God Bless you

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@sprudlow

I have been looking into jobs I can do at home online, but I will definitely look into this and look into your words of advice to others. I really appreciate your responses to me and your honesty, I was starting to feel like I was losing my mind and the thought of being 53 and having to start all over again is very overwhelming. Being a single parent with a daughter with a Borderline Personality Disorder age 23 still living with me and struggling with life herself. You have made it clear that this is going to be a battle with a lot of closed doors, but for me I have to get ready for this battle and fight for me for once. As discouraging as this do I dare say disease is, with everyones struggles and frustrations with the medical field, it is encouraging to hear from people like you who have been fighting this fight and continue on fighting. Thank you again for your honesty, wisdom and words of encouragement. You have helped give me the kick in the butt I needed today to prepare and move forward. God Bless you

Jump to this post

Your words I read come at a time that these were needed. The reactive arthritis and presnisone has been rough these last three weeks. Hearing from someone which was able to gain something, maybe just encouragement, maybe help, maybe more comfirms something God put in my spirit last year.....you are to help others with this disease. He put in my mind I would not be healed as He has done and we have seen in today's life with others and those we study in His Holy
Word. What you wrote and some others have said are all confirmations of my understanding from Him.

Thank you, bless you and your daughter. May God shine His face upon you. May He comfort you and lead your path in the life journey.

In Christ,

Justin

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