Does anyone know of anyone whom has gotten over Long Covid Condition

Thank you for your input... SO much! When you say "Don't over extend yourself."...is 5 minutes of mild exercise a day ok? And is there a particular brand of Vit B3 that you preferred? I always go with brands that are third party tested for an unbiased review. I already have been on a low histamine diet for 7 months now and have not had much, if any improvements. My Tryptase blood levels keep going up despite that low histamine diet which shows that my mast cells are giving off too much histamine. So I get tremors and heart palpitations from it and zaps down my legs and muscle twitches. I am also being ruled out for Lyme disease although I don't ever recall a tick bite. But it seems Lyme disease can stay dormant in you as long as your immune system is in check but once getting covid some immune systems can't deal with the covid AND the Lyme so it goes after what virus is strongest thus causing the Lyme disease to come out of its dormancy. Seems many, many people have Lyme disease and don't even know it. Lyme testing is difficult and most conventional doctors are not familiar with the extensive testing involved. They order one simple blood test and think that if its negative, your fine but that is definitely not the case. There is so much more testing like Western Blot tests and the like that should be done and even then if you are not dealing with a Lyme literate provider then you can get the brush off.
In any event, I am waiting for my Lyme disease test results from an independent lab that came highly recommended from Lyme disease folks and also will need a bone marrow biopsy to see if I am dealing with systemic Masto cytosis post covid per the Immunologist and Hematologists recommendations.

I will definitely try the B3 supplements and have restarted my liquid IV packets again. Thank you so much for your very valuable input. God Bless you and stay healthy. Waiting for my day to turn a better corner.

My tremors feel head to toe. Feels like I am sitting on a washing machine during the spin cycle. Especially in my torso and abdominal area. I am currently reading a book on Vagus Nerve Healing written by a physician so I am doing the work and trying out the exercises recommended. My tremors are far less worse when I am at rest because my muscles nerves are not firing or demanding as much when I am not really moving at all. I saw someone recommended Vit B3 as key and so just ordered some. I DO see a FUNCTIONAL MED Dr at the Cleveland Clinic and she has me on Mast Cell Stabilizers but not much is helping because my Tryptase levels are going up which give off histamine and can cause tremors. I have been on a low histamine diet now for 7 months as well. Until Covid I was in EXCELLENT shape. I was very athletic and in perfect health. I had three of the vaccines and was due for the fourth but then got Covid. My PCP told me not to get any more vaccines of any kind right now while I am dealing with all this because he said my immune system is running amuck right now and another vax could confuse it all the more.

Can you give more specificity about Liquid IV....is this from Amazon...if so exactly which one you get etc.

Thx

Hi ritzgerb,

Liquid IV is one of many electrolyte powders available on the market. You can buy it on Amazon, or Costco, Target, Walmart etc. There is a non-sugar option now, which is my preference because the original had quite a bit of sugar in it (not good for inflammation). And there are many flavors to choose from. But ultimately they are all the same formula of B-vitamins, potassium, sodium etc. I prefer Liquid IV because of the high B-vitamin content and I feel it's one of the best for overall hydration, particularly when watered down and sipped throughout the day. Hope this helps!

All the best!
Denise

Thank you!

i tried to reply yesterday, but somehow my message was lost.
i dodo have tremors head to toe that come and go. mostly at rest. they diminish or go away when i move around, then come back when i stop. i have no external tremors. i also have has lots of bloating, which has been made better with amla (indian gooseberry). i bought the powder and made my own capsules so i could figure out the dosage. i am right now taking Xifaxan. it has had no effect on the tremors. neither has propranolol or Zoloft.
my dr. gave me a prescription of primidone (mysoline). however, i found out that it us a barbiturate and i get reverse reactions to it so do not plan to try it. both propranolol and mysoline are recommended for long term essential tremor. i also tried an Apolloneuro device which made the tremors worse, which made me think my vagus nerve is involved (the apollo device sends sound waves to stimulate the vagus nerve).
i also take 4.5 mg LDN which has been wonderful for improving my energy levels. it has made a big difference.
if the new reaseach about LC and gut serotonin play out maybe there will be a solution. i plan to start taking either amino acids supplements or tryptophan or trying low dose lorazepam.
regards, ellie

I am scheduled for a bone marrow biopsy and am really scared . I never had anything abnormal in a blood test before!! And I am 75 years old. The blood test results are worrisome. The more I read the more I realize what an absolute beast Covid is. But abnormal red cells need to be checked out and I read this can be a result of Covid lasting anywhere from two months to two years after infection!

I’m having trouble staying hydrated after having 18” of my colon removed due to severe diverticulitis. I was told by my Functional Medicine Dr to use LMNT Electrolyte Drink Mix. You can order it on Amazon. There are 1000 mg of sodium in 1 packet and no sugar, 200 mg of Potassium and 60 mg of Magnesium. I am also suffering from Hashimoto’s/Hypothyroidism and lost my taste and smell in December of 2022 due to Covid. I still don’t have my taste or smell back and am currently trying Acupuncture for that. So far, after 8 treatments, no taste or smell…. I wish you all the best on your personal health journey.

Thank you for your valuable input! Especially about the Apolloneuro band. I bought one as well and after two days of use I felt that it contributed to my tremors returning and/or worsening my palpitations. I thought it was just one of those coincidences as we seems to second guess ourselves often, but hearing that this also happened to you made me feel secure in my initial observation about the device. I stopped wearing it over a month ago but to no avail...I still have the tremors that no one sees, but that I can feel. The tremors make me feel like I could run a hundred miles... as if my adrenaline is being affected by my vagus nerve. Thank you for your observations on the other meds as well. I am very sensitive to any medication (new since post covid) and don't care to try this or that if it will not help. I too have some odd reverse reactions to many meds they have tried on me--- even at children doses. I know everyone is different but I am also finding out that many of us are experiencing similar responses to symptom management. I talked to my functional medicine Dr about the Amla just a few weeks ago and she said she would have to look in to it and discuss it at our next appointment. It was recommended by a friend who is going through LC and was one of the FIRST nurses in our area to be stricken with it. She has done many local interviews and is offering advice on what works for her. She also has LYME disease which was brought out by LC. Seems when our immune systems are in check the Lyme can remain dormant and many of us can live with it but when Covid interferes the immune system leaves the door unlocked to fight stronger things and things that were once locked away are now free to roam our bodies. I have a pending Lyme disease test that was sent out to an independent lab because the hospital labs are not reimbursed for the stringent Lyme testing so unless you are flamingly positive with Lyme Disease a hospital Lyme test could give you a false negative result. So I paid 1600$ for a very reputable independent lab ( IGENEX) to run the in-depth Lyme tests for final peace of mind.

I feel your fear. I too am getting a bone marrow biopsy in Nov. because of elevated tryptase levels not responding to antihistamine protocol my doc has me on or the fact that I've been on a low histamine diet for 7 months. It is not only discouraging but very scared wondering if there is more to long covid than meets the eye. I DO know others who have had bone biopsies post covid and they came out normal. I am hoping for the best for us both.