Maraviroc update - Long-Covid (POTS)

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  • Опубліковано 18 гру 2024

КОМЕНТАРІ • 46

  • @crystalkeara8868
    @crystalkeara8868 3 роки тому +4

    Treating the mat cells with diet and high dose antihistamines, high dose singulair and Xolair injections every two weeks has helped tremendously! Before Covid I was a mountain runner (22 miles at a time). Got Covid in March 2020 which was mild, but lasted about a month. Then in July I became bedridden. Lots of salt, testing the mast cell symptoms and time have been working. I still have bad days, but now they are less (likely use to them too). I think I had MCAS undiagnosed prior to Covid. Just started Corlanor to help reduce the heart rate even more. Before allergy meds it was 130 average, going as high as 200 bpm. Then 3 days after Xolair injections it went down to 110-120 bpm and my breathing improved. I didn’t even realize I had an issue until I felt able to breathe deeply and with ease. Foods, heat and exercise still flare me, but I now can manage. Really hoping the Corlanor for the POTS helps. It will feel strange not to feel jacked up anymore. I always feel like I drank multiple pots of coffee. I hate having to be on meds forever, but if they give me my life back then I will take them. I haven’t been right since I was 14 years old (likely after some kind of infection), I’m now 43. My doctors and I have been trying to figure out what was wrong with me for years. My labs are AWLAYS normal. If it wasn’t for the POTS and MCAS being so severe after Covid then I would have never been diagnosed. The testing for these conditions are the only ones that ever came back positive and I respond to meds. I hope you get better soon and definitely look into MCAS. If you have POTS then you likely have MCAS because these conditions tend to coexist. Do you know if you have EDS or hyper EDS?

  • @cynthiabesson6734
    @cynthiabesson6734 2 роки тому

    Thanks so much for sharing with all of us as we are just starting to go thru the protocol

  • @rpierce7004
    @rpierce7004 3 роки тому +4

    Where do you get the list of doctors from Dr.Patterson recommdations?

  • @MrMomrod1
    @MrMomrod1 2 роки тому +1

    I did the protocol as well for over a week. Felt like my head was caving in.. was in bed for 3 days. I stopped taking the meds

  • @browneyedgirlFL67
    @browneyedgirlFL67 3 роки тому +2

    Can you share what the labs are for the Covid that you referenced. Thank you.

  • @behnamkhaki4986
    @behnamkhaki4986 4 місяці тому

    my VEGF and SDC40 were normal, and CCL5 (RANTIS) was elevated. Started the protocol 2 months ago. My symptoms are mostly neuropathic pains (all after v a x).

    • @rtjfamily
      @rtjfamily 5 днів тому

      Have you seen any relief at all?

  • @robertpickering9942
    @robertpickering9942 3 роки тому +3

    I would love to talk to you. I had covid in March 2020. I have a lot of the same symptoms that you have. I suffered heart complications and now my heart rate is in the 50s. It will jump to 130 or so if I get up and do anything. Even when I am sleeping it will do it. I also have the brain fog, neuropathy, cannot exercise because it causes symptoms to get worse, cannot work basically. I have experimented with ivermectin and it helps for about 2 weeks or so but then my symptoms come back. I had zero heart problems before covid. Would really just love to talk to someone that I can compare notes with and see what has worked for each other.

    • @neverseenblue11
      @neverseenblue11  3 роки тому +1

      My heart goes out to anyone going through this. I have a lot of tips that have gotten me somewhat better over the last 18 months. I'll do a video on it tomorrow. It will be kinda long. My HR no longer goes over 90/ 95 when I stand and I've been able to go back to work over the past couple of months.

    • @rudygonzales3589
      @rudygonzales3589 3 роки тому

      @@neverseenblue11 what do you think have you the best progress? Certain meds or just time along with diet

    • @polyforge3d
      @polyforge3d 3 роки тому +1

      I have identical symptoms. It started in December 2020. While lying down, the pulse of around 65 rises to 115-130 when I stand up, and then there is tightness in the chest, shortness of breath, increased dizziness, weakness. Exercise worsens the symptoms. Other symptoms include joint pain, especially in the fingers and toes, muscle pain, chronic fatigue and weakness, gastrointestinal problems, nausea, dizziness, earache, eye pain, and sleep problems.

    • @rudygonzales3589
      @rudygonzales3589 3 роки тому

      @@polyforge3dthanks for replying, your 9 months in and still all those symptoms? My two are chronic fatigue and pots like symptoms. What helped with the pots?

    • @polyforge3d
      @polyforge3d 3 роки тому +1

      ​@@rudygonzales3589 Unfortunately, I still have the same symptoms all the time, including POTS and chronic fatigue. all I noticed was the improvement of POTS symptoms when I was on a hike in the mountains. I did not want to go, I thought I could not do it, but I forced myself. Walking in the mountains felt quite good, my heart rate dropped to about 90-100 after such walking while standing. However, it only took a few days and everything was back.

  • @thirstythursday123
    @thirstythursday123 2 роки тому

    Could you tell me where you get tested for blood work or how we find dr Patterson dr’s. Hope your doing well. Thank you.

  • @mr1001nights
    @mr1001nights 3 роки тому +2

    So the Maraviroc didn't improve any neurological symptoms?

  • @dominictalorico3983
    @dominictalorico3983 3 роки тому

    Hi this question seems sort of arbitrary but we're you able to get any insurance reimbursement , I'm thinking about being tested had covid over 3months ago have many long haul symptoms just not as severe as some people, I still have shortness of breath , not to mention a non productive cough or a constant need to clear my throat ,f as fatigue and peripheral neuropathy

  • @dominictalorico3983
    @dominictalorico3983 2 роки тому +1

    How much maraviroc were you on ?

  • @steve0ne11
    @steve0ne11 2 роки тому

    What were your InCellDx labs like? Mine were really bad, with 10 elevated parameters. My index was 1.3.

  • @vanjacalantropo
    @vanjacalantropo Рік тому

    How are you now? Did anything help? I have the same symptoms.

    • @neverseenblue11
      @neverseenblue11  Рік тому +1

      I'm able to walk over 7 miles a day at this point. I really need to make a new video.

    • @vanjacalantropo
      @vanjacalantropo Рік тому

      @@neverseenblue11 omg that’s fantastic! You were able to walk long distance while having LC right? I can barely walk 5 min.. thank you for sharing!

    • @neverseenblue11
      @neverseenblue11  Рік тому

      @vanjacalantropo I was in pretty bad shape at one point. I couldn't even grocery shop without feeling faint or like I'm going to pass out. My heart rate would sore!

    • @vanjacalantropo
      @vanjacalantropo Рік тому

      @@neverseenblue11 I hear you! Resting doesn’t help and doing things doesn’t help. Its great you are doing so well now!!!

  • @hilarymurray7800
    @hilarymurray7800 2 роки тому

    Did maraviroc get rid of the brain fog, and anxiety and depression?

    • @dritonaliu5611
      @dritonaliu5611 2 роки тому

      Wow thats awesome. You are the lucky few that it helped. I did it for 5 months it did nothing for me. Did maraviroc, statin, aspirin, and ivm.. sadly many many of us had no benefits at all. Even tho after we were checked we had 0% s1 spike protein yet no improvements.

  • @miquelramirez7584
    @miquelramirez7584 3 роки тому +1

    43MAR 👫👄💖

  • @miquelramirez7584
    @miquelramirez7584 3 роки тому +1

    MRA MRA 34😘👄💏❤