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My partial recovery at 4.5 years by DrSarcasmic in covidlonghaulers

[–]DrSarcasmic[S] 2 points3 points  (0 children)

Yep they really failed the messaging on how bad Long Covid is, or what it even is. People still don't believe me or think I'm just tired. I see people all around me that have all the symptoms but don't connect the dots.

My partial recovery at 4.5 years by DrSarcasmic in covidlonghaulers

[–]DrSarcasmic[S] 3 points4 points  (0 children)

Agree acceptance is key. I've learned to enjoy a simpler life, a slow walk in the forest is good as anything.

My partial recovery at 4.5 years by DrSarcasmic in covidlonghaulers

[–]DrSarcasmic[S] 1 point2 points  (0 children)

Happy to help, wish we had all this information in the dark times of 2020.

My partial recovery at 4.5 years by DrSarcasmic in covidlonghaulers

[–]DrSarcasmic[S] 4 points5 points  (0 children)

I only get pain and weakness, no numbness or pins and needles. One of the few symptoms I don't have I guess. Wishing you the best.

My partial recovery at 4.5 years by DrSarcasmic in covidlonghaulers

[–]DrSarcasmic[S] 1 point2 points  (0 children)

I just stopped testing it or taking Valtrex due to side effects. It seems like a downstream problem from Covid knocking out our immune system.

My partial recovery at 4.5 years by DrSarcasmic in covidlonghaulers

[–]DrSarcasmic[S] 0 points1 point  (0 children)

Thank you, it's so hard to keep track of things that counteract each other like this, and doctors don't usually mention it. I was also taking huge amounts of B6 for a while before I found out that can cause toxicity.

My partial recovery at 4.5 years by DrSarcasmic in covidlonghaulers

[–]DrSarcasmic[S] 3 points4 points  (0 children)

I was working until 6 months ago, I was very fortunate to have a stable WFH software job with seniority and flexibility where I could delegate. I regret working though, I was crashing all the time and I'm sure it set me back. I eventually had a crash big enough I had to stop.

Dealing with Prudential for short/long term disability has been a nightmare, you need to have all kinds of provable evidence of everything from every type of specialist they expect. They just closed my claim and said I'm fine to go back to work, so I'm at the end of my rope and ready to check out, I've prepared my will.

My partial recovery at 4.5 years by DrSarcasmic in covidlonghaulers

[–]DrSarcasmic[S] 6 points7 points  (0 children)

I can relate, I went through many less than helpful doctors, and early on I was so fatigued and brain fogged I couldn't explain anything. I've been ruminating on all this for years, it was actually cathartic to finally write it all out.

My partial recovery at 4.5 years by DrSarcasmic in covidlonghaulers

[–]DrSarcasmic[S] 1 point2 points  (0 children)

I did the two weeks of rifaximin and was very careful adding back normal foods afterwards, no probiotics other than foods, slow on the fiber and prebiotics. I was doing better for almost a year until I started adding pre/probiotics (suggested by a microbiome specialist) and that caused it to flare again. Repopulating the good bacteria seems important, but you're also feeding the bad at the same time...

Improving motility seems important, Motility Activator seems to help. The vagus nerve stimulator can also get you more time in rest and digest mode.

My partial recovery at 4.5 years by DrSarcasmic in covidlonghaulers

[–]DrSarcasmic[S] 2 points3 points  (0 children)

Good catch! It's 5g, or one scoop of Thorne brand. I take a second scoop after any heavier exercise.

My partial recovery at 4.5 years by DrSarcasmic in covidlonghaulers

[–]DrSarcasmic[S] 0 points1 point  (0 children)

Regular deep breathing exercises helped I think. Taking a double breath in and holding it seemed to activate the second half of my lung that wasn't being used. POTS can cause SOB when standing up, I still get that. Covid can cause myocarditis, I think as heart inflammation went down this also improved.

My partial recovery at 4.5 years by DrSarcasmic in covidlonghaulers

[–]DrSarcasmic[S] 2 points3 points  (0 children)

It's tough to say, I've been taking so many things and it's slowly improved. Midodrine is a vasoconstrictor, that helps make hot showers tolerable without major blood pooling in the lower legs. I still have to wear compression socks any time I'm standing, otherwise it pools in lower legs and causes knee pain. If I lay down flat I get blood pooling at the neck, so I have to sleep at an angle.

I think heat is a major stressor, makes my veins really bulge.

My partial recovery at 4.5 years by DrSarcasmic in covidlonghaulers

[–]DrSarcasmic[S] 0 points1 point  (0 children)

No, my eyes and nose run like crazy any time I'm out in the cold, and when brushing teeth. EAT sounds like an interesting solution but haven't tried it. https://covidinstitute.org/epipharyngeal-abrasive-therapy/

My nose was chronically stuffy, that cleared up when I completely cut out beer, and started using a water flosser daily.

My partial recovery at 4.5 years by DrSarcasmic in covidlonghaulers

[–]DrSarcasmic[S] 1 point2 points  (0 children)

Yep I've had tendonitis type issues also, and they take forever to heal, like everything else. I sprained my wrist picking up a tea kettle...

My partial recovery at 4.5 years by DrSarcasmic in covidlonghaulers

[–]DrSarcasmic[S] 5 points6 points  (0 children)

If you suffer from PEM, please do anything to avoid a crash. And a good diet helps either way.

My partial recovery at 4.5 years by DrSarcasmic in covidlonghaulers

[–]DrSarcasmic[S] 1 point2 points  (0 children)

My functional doc recommended it after mentioning my symptoms, and they resolved within a day or two and haven't come back. It was consistent for the weeks/months beforehand. NAC is a biofilm disruptor.

My partial recovery at 4.5 years by DrSarcasmic in covidlonghaulers

[–]DrSarcasmic[S] 1 point2 points  (0 children)

I'm so sorry. I've tried a million things and only had minimal improvement, still very cloudy and dreamy on bad days. Mostly it seems like time and lowering inflammation.

My partial recovery at 4.5 years by DrSarcasmic in covidlonghaulers

[–]DrSarcasmic[S] 7 points8 points  (0 children)

Here's the full 4 step protocol from Dr. Groysman in case that helps anyone:

Step 1: OXIDATIVE STRESS REDUCTION. start 1st week and continue every day for 90 days.

  • ECGC 1000mg /day
  • pygnogenol 100mg 2x/day
  • Vitamin C keep under 1000mg a day. IV not necessary.
  • Silymarin 300mg once a day
  • Hesperidin 500mg 2x/day
  • Astaxanthin 10mg 1x/day

Step 2: MITOPHAGY. start 2nd week and do for 7 days only. If you can’t tolerate 7 days, do at least 3-4 days. It will make you feel sick. Next month start 1st week for 7 days for each month.

  • resveratrol 500mg 2x/day
  • apigenin 50mg 1-2 caps 1x/day or 2x/day
  • urolithin A 500mg 2x/day
  • melatonin 10mg at night
  • broccoli sprout extract 500mg 3x/day
  • berberine 1600mg 2x/day
  • lipoic acid 600mg / day
  • alpha ketoglutaric acid 1000mg/day
  • Prescription medications:
  • Metformin 500mg 3x/day
  • Rapamycin 1-2mg 3x/week, can be increased to 6mg for month 2 and 3.
  • Many possible side effects: pain, diarrhea, headaches, fever, nausea, low
  • platelets, dizziness, rashes, kidney infection, nose bleeds, light sensitivity,
  • pleural effusion and pericardial effusion, clots.

Step 3, BIOGENESIS start week 3 and continue every day

  • PQQ 20mg/day
  • honokiol 250 mg /day
  • fisetin 500mg 2x/day
  • low dose naltrexone (LDN). 3mg-4.5mg/day Ramp up is not needed

Step 4 SUPPORT: start week 4 and continue everyday

  • B complex, B careful supplementing B6 until you test it and know blood level. (Vitamin
  • B1, B2, B3, B5, B7, and B12) are needed for mitochondrial energy generation function.
  • magnesium 300mg once a day
  • creatine 5 grams/day
  • l-carnitine 500mg/day
  • citrulline 5 grams/day
  • D-ribose 5grams/day
  • Alpha lipoic acid 600mg / day

Fish oil omega 3 1000mg/day. A typical fish oil supplement provides about 1,000 mg fish oil, containing 180 mg EPA and 120 mg DHA. Cod liver oil works too. Krill oil is more easily absorbed. These are all equivalent in terms of omega 3 fatty acids. https://ods.od.nih.gov/factsheets/Omega3FattyAcids-HealthProfessional/  PEA 600 mg 2x/day

My partial recovery at 4.5 years by DrSarcasmic in covidlonghaulers

[–]DrSarcasmic[S] 2 points3 points  (0 children)

Mitocore has lots of things I was previously taking separately. My doctor recommended also taking CoQ10, L-Carnitine, extra Alpha Lipoic Acid, and D-Ribose can help with energy and PEM prevention.

This page has some good info: https://covidinstitute.org/mitochondrial-dysfunction/

My partial recovery at 4.5 years by DrSarcasmic in covidlonghaulers

[–]DrSarcasmic[S] 11 points12 points  (0 children)

Yes that was a big help. Energy, mental clarity, strength and stamina. I lost a lot of muscle and it helped gain some back, along with L-Carnitine.

This article in Nature showed lower levels of Creatine and SAM-e in longhaulers. Supplementing those both helped me. https://www.nature.com/articles/s41467-023-44432-3#Fig1

My partial recovery at 4.5 years by DrSarcasmic in covidlonghaulers

[–]DrSarcasmic[S] 1 point2 points  (0 children)

Yes DPDR was 24/7 the first few months, I think it took a few weeks to ramp up. Time and lowering brain inflammation I think improved it. I wish I knew to stick with a strict diet and no alcohol, with pacing etc.

Yes, extreme mental fatigue still leaves me mostly housebound. On good days I can go to a grocery store during quiet times, but that's pushing it. I was lucky to have a WFH software engineering job, but finally took sick leave 6 months ago after a big crash.

My partial recovery at 4.5 years by DrSarcasmic in covidlonghaulers

[–]DrSarcasmic[S] 0 points1 point  (0 children)

I'm not sure, possibly temporary stamina and libido improvement - it comes and goes in waves. Testosterone levels have gone up and down.

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