best practices for post covid syndrome ie. long haul people

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  • Sun, Nov 29, 2020 - 04:48pm

    #1
    capesurvivor

    capesurvivor

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    best practices for post covid syndrome ie. long haul people

Not sure where to post this so new topic. My 38 y.o. immune-compromised son got covid about three weeks ago. He almost died the first day, then bounced back pretty well and is home, never intubated or O2. Lots of scans in the ER didn’t reveal any damage in lungs, cardiac, and chest, IDK if had brain scan, I was 2000 miles away and found out days later and he does not like to dwell on crisis details. He developed various nasty symptoms suggestive of neurological impairment such sudden tachycardia, extreme sensitivity to cold such as inability to pick up a cold soda can,  sweats, severe abdominal and intestinal pain with no identifiable cause, severe low back pain with no cause, severe fatigue with 14 hour naps,  etc. He is on no meds and in ER did not receive anything we would have taken , probably just got a dexamethasone injection. His symptoms are similar to chronic fatigue/myalgic encephalitis and fibromyalgia, the latter of which I have struggled with for 30 years with virtually no success at pain relief. Did Chris post a best practices for post covid syndrome and I missed it? Does anyone else have a source for this? There is a FB group I’ve just joined, no info yet. This is a big problem for thousands of people and their diagnosis apparently depends on what subspecialty they see, not good. Medicine has not handled ME or FM well over the years and I fear my son and others will be left behind with resources focused on acute treatment.

  • Sun, Nov 29, 2020 - 06:15pm

    #2
    VeganDB12

    VeganDB12

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    Reply To: best practices for post covid syndrome ie. long haul people

I am sorry your son has long haul covid 19. I have posted a few articles about long haul Covid but am not aware of standardized best practices.  I can share a few things I have picked up on the long hauler blogs.

1. For fatigue, pacing rather than graded exercise.  Pacing means activity within boundaries without pushing past to fatigue. Overdoing leads to recurrence/relapse of some symptoms.  Rest rest rest.  The ME/CFS sites have good information on this.

2. I have spoken to docs researching this issue; it may be autoimmune, residual infection or possibly histamine related or some combination of all 3. There are Covid clinics that do remote consults and you can search google to find them. Mayo clinic is one but there are many others popping up all over the country.

antihistamine medications to be surprisingly helpful (loratadine, pepcid for rash/stomach upset)   Everyone is different and the problems may need to be evaluated individually.  It can improve over time but not clear if things always go back to normal as the underlying harms done by the virus vary.Some people do well with second trial of steroids, some don’t.

A very good ME/CFS site is https://meassociation.org.uk/.

An excellent long hauler resource (where many HCW post ) is bodypolitic.slack.com. It has threads organized according to symptoms (neurologic, fatigue, etc…) and a good search function.

Wishing you the best. There is a lot of research going on in this area and treatments will become available. In addition as I said, there is a role for further exploration of individual problems.  Many people end up on baby aspirin or blood thinners as prophylaxis as well but this has to be discussed with your son’s physician as there are risks.

minor edit

 

  • Sun, Nov 29, 2020 - 07:32pm

    #3
    suziegruber

    suziegruber

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    herbal approach

Hi CapeSurvivor,
I am sorry to hear about your son.  If you are open to alternative approaches, check out Stephen Harrod Buhner’s information on both Covid and its aftermath.

I wish you both well.

–Suzie

  • Mon, Nov 30, 2020 - 12:04am

    #4

    davefairtex

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    reddit covid longhauler group: niacin

It seems (from the following reddit group, link below) that the full-flush niacin helps some percentage of long haul COVID patients immensely.  Others, not so much (assuming the nay-sayers aren’t shills for Pharma – niacin is incredibly cheap, so nobody in Pharma will make money on this if it works).  If the nay-sayers are genuine posters, perhaps this is a result of differing genetics in the population.

https://www.reddit.com/r/covidlonghaulers/comments/jxm6wy/i_tried_niacin_for_the_first_time_and/

and also

https://www.reddit.com/r/covidlonghaulers/comments/k2mzr8/8_months_in_what_has_and_hasnt_helped/

[23 mar – one week ago – nothing helped.  then…]

Early Sept 2020: I began searching online, and saw recommendations for a number of vitamins. B12, C, D, Zinc, K2, Omega-3.

These did seems to help very slightly, but no real inprovement from this time until mid November…

Which brings us to one week ago.

On recommendation from the “Biohackers” article, I tried Niacin. My full experiences of the first 24 hours are detailed in my previous post.

In short. It helped significantly. The only symptom which is hasn’t done anything for is the headaches. Everything else has improved massively. Not 100% but I now feel 75% myself, in conparison to 25% of lower.

I was finally able to get back to work (programmer, non active job)

Yesterday, after discussing the findings and the possible links to MCAS and NAD+ depletion with my doctor, he recommend I tried increasing the dose of Niacin from 50mg once a day to 100mg twice a day with meals.

It has only been one day, but that has definitely bumped me up to 85% in the short term.

Niacin in dosages up to 3000 mg/day appear safe, as per the 6-year 3g/day study done back in the 60s on 1100 patients – who had an 11% all cause mortality benefit vs the placebo group.  So even though you get the flush, it doesn’t seem to actually harm you.

https://core.ac.uk/download/pdf/82670876.pdf

It is the flush that scares people.  I’ve been trying 500 mg 1/day for 2 weeks now.  Flush is actually – believe it or not – enjoyable, if you can relax into it.  Its like a non-painful sunburn that lasts for 30-60 minutes, then leaves me feeling slightly happier and more peaceful.  I take it because NA is a NAD precursor; NAD is a critical item in the body used in 400 different processes, and it declines straight line with age, right along with glutathione.

I’m not a covid long-hauler, nor am I a doctor, nor is this medical advice.  Etc.  But I was interested to note that others on this covid longhauler reddit group found it helpful.

At $6 for 100 x 500mg tablets, nobody makes money on Niacin – so the positive comments are most likely genuine.  My sense anyway.

  • Mon, Nov 30, 2020 - 03:59am

    #5
    VeganDB12

    VeganDB12

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    glymphatic massage

glymphatic massage for long haul fatigue, headache, fog (the theory)

demonstration of technique (6 minute video, done gently)

 

  • Wed, Dec 02, 2020 - 03:12pm

    #6
    Mary59

    Mary59

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    Neutral Website for mainly Treatments for COVID –

https://covexit.com/

About this Blog
This is a blog by Jean-Pierre Kiekens, an Oxford graduate and former university lecturer, presenting news and independent policy analysis about the pandemic with focus on treatments.

They Feature our own DR CHRIS Martenson….

“I am going to want Zinc plus Hydroxychloroquine plus Azithromycin” — Chris Martenson, PhD“I’ll tell you what. If this is me, and I am me, and I end up getting this thing, I am going to […]

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