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How do you get some answers?
I started having health issues in 2021 starting with fatigue then adding in GI issues, recurring SIBO/IMO, increased anxiety, brain fog and concentration issues, ringing in my ears, and increasing blood pressure. I had very mild COVID and only had the home tests nothing lab confirmed, and I did have several rounds of mRNA vaccine before I had COVID. I've been bouncing around between doctors and specialists and all tests have come back normal. I have asked about a possible COVID connection to what I have going on and it pretty much gets dismissed right away and the topic changes. I don't even know that long covid is what I'm dealing with but I have my suspicions. Any suggestions on how to try to get to the bottom of why I have all of these new issues and how to get on the path to feeling better?
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P.S. You say that Mayo could help you (or could have helped you) if they would “change their approach.” 1. What WAS their approach? 2. What was wrong with it? 3. What better approach should they take? I have an appoint with Mayo soon, so your answers would be very helpful before I drive to their clinic in Rochester from Chicago. Thanks!!
@stuartkjones4 1. Mayo tested me for multiple blood markers, more blood tests than I had ever had in my life, and a tilt table test, and a sleep apnea test. Multiple conversations with Doctors of various specialities and all tests showed normal. All that was September of 2023. 2. All tests and consultations showed normal although I was suffering from PEM, Exercise Intolerance, Brain Fog, Rocking sensation, and a terrible Head Sensation. I knew something was wrong, yet all tests and consultations returned normal. The balance of the program consists of a course of drug therapy (cymbalta and naltrexone) and virtual coaching from a nurse and physical therapist with an exercise program. 3. A better approach, I would compare what they say is their current approach to my description, and point blank ask them 'has your approach changed?' over the last couple of years. Mayo did help me with coping techniques such as limiting my physical and mental activity levels to avoid a crash. And as with any journey you learn lots along the way and once I 'checked the box with Mayo' it allowed me to make a decision to look for other help. In my life and profession I have always endeavored to find a root cause, a 'murder weapon' so to speak. Thats just one thing I like about Dr. Patterson; vascular inflammation is the root cause of our symptoms and he can measure improvement.
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1 ReactionThis is me!!! Oh my god I am not alone. And because I am a woman ( I believe) stress and depression seem to be the go to answers! That’s BS. Trying again with my PC doctor in June. I feel so useless. Each day is unpredictable. Will I be able to function or not? I never know. I hope I get help
@stuartkjones4 1. Dr. Patterson's working theory is that vascular inflammation is the root cause of LC symptoms. He has developed a blood test measuring markers that verify vascular inflammation and other things. His blood test is the first and only blood test that showed my blood was abnormal. I was out of normal bounds on 14 elements, some 100x. His approach is a series of drugs and life style changes that cure vascular inflammation. 2. All of my symptoms have improved. I had PEM, Exercise Intolerance, Brain Fog, Rocking Sensation, Head Sensation. I couldn't exercise without a crash which then caused me to sleep for hours. A couple of my more troubling symptoms was a lack of motivation and an inability to focus on things for more than about 5 seconds. I don't know if those are additional to my listed symptoms or in addition. 3. As mentioned "His approach is a series of drugs and life style changes. I would add that he states an 80% cure rate and once you are done with his program you stay cured. 4. Dr. Patterson is in Houston, and all of his appointments (and those on his team) are virtual. Full disclosure, I don't work directly with Dr. Patterson. Like any good Manager, he divides his work amongst his team by symptom type. Once your initial blood tests are available, a decision is made whether you see Dr. Patterson or another Doctor on his team. There are tons of YouTube videos with Dr. Patterson. I highly recommend you spend the hours it takes to more fully understand what is possible.
I found this article and I know that most of you probably already know a lot of this, but it does have some information that I did not know.
https://my.clevelandclinic.org/health/diseases/25111-long-covid
I started having what felt like urinary tract infections (UTI). I went to my doctor and did not have a UTI. She referred me to a urologist that said it sounded like interstitial cystitis, however after she did an exam, etc., that proved to be false as well. I noticed that when I drank anything other than water, I had that UTI pain. So, I decided to just drink water. I have not had any UTI type pain or symptoms since. I will tell you, though, I would love to have a Ginger Ale!!! 🙂
I understand. I have to just take each day and do what I can. I never know how I will feel. Hang in there!!!
Hi Diver, I’ll buy you a ginger ale any time - to thank you for sharing you valuable information about drinking only water! So glad you have no more pain! I’ve recently had mild bowel discomfort, thinking coffee and diet coke caused it, so I’m going to give them up now and drink only water, thanking you for having the courage to relegate yourself to drinking only boring boring boring water.
PS. I’ll let you know how that works. If it does, count on a good old glass of delicious ginger ale from me. 🥂
PPS. I have read that LC causes GI “symptoms,” though I can’t remember the nature of those symptoms. I think diarrhea is one. arichards writes that his doc says LC is caused by inflammation of the vascular system. Could that cause GI problems?