What helps longhaulers dealing with Chronic Fatigue?

Posted by seidholz @seidholz, Feb 13 6:17am

I have been in the NIH Long Haul research program since 2020. I have been diagnosed with all the tropical symptoms- loss of taste and smell, brain fog, dizziness etc. all have improved over time with the exception of Chronic Fatigue. I have asked, even pleaded with my doctors and researchers for a solution for this and get only blank stares. I have regularly exercised, watched my diet, lost over 30 pds, get plenty of sleep and take all sorts of vitamins and supplements- with no effect. Does anyone have any suggestions? All my blood work and multiple tests with the NIH study come back normal. Very frustrating

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hicopd | @hicopd | Mar 14 7:30pm

It also helps if you can have a POTS expert help if you have postural orthostatic hypotension. They can help you with Midodrine for floppy vasculature and a low dose beta blocker to reduce the high heart rates. They are also familiar with what doses are best and which medications have fewest side effects.

carlosmayo | @carlosmayo | Mar 15 11:01am

Sorry for the slow reply ... I missed the question.
I don't have links. Initially both Naltrexone and Abilify came from compounding pharmacies. But to save money I now take an Abilify oral solution 1 mg/ml and dose with an 4ml oral syringe - 3.5 mg/day. Camber Pharmaceuticals brand.
For Naltrexone I make up my own 1mg/ml solution with 50 ml water and one 50mg Natrexone Hydrochoride tablet (Mallinckrodt manufacturer), then again using an 1ml oral syringe take 0.9ml/day. The dose levels were arrived at through a very gradual many months step by step increase in dose to find the maximum that I could tolerate without side effects. Hope that helps, happy to answer any other questions.

sandguy | @sandguy | 6 days ago

In reply to @carlosmayo "Sorry for the slow reply ... I missed the question. I don't have links. Initially both..." + (show)

I'm sorry, but I'm a little taken aback at your Naltrexone dosage. You are only taking .9mg per day?
The normal LDN is between 1.5-5mg, so I'm surprised you'd be getting any effect from that.
Please clarify, thanks!

mspaminreno | @mspaminreno | 6 days ago

I'm 82 years old and 4+ years post covid, I am supplementing for energy. I don't feel perfect each day but I supplement anyway. The thing I learned is that we don't start out with the same amount of energy available each day and it is up to us to rest too in order to help our body. I know you're curious: I take L-Carnosine, Taurine, ATP and some more natural things. May I suggest you take a look at the free YouTube channels of Gez Medinger (he is one of us). Also, check out the free chanel of the Bateman Horne Center.
And, before I forget: According to the Institute for Neuro-Immune Medicine (also on YouTube - free) today is Long Covid Awareness Day - "Happy Anniversary"

carlosmayo | @carlosmayo | 2 days ago

In reply to @sandguy "I'm sorry, but I'm a little taken aback at your Naltrexone dosage. You are only taking..." + (show)

My mistake Abilify dose is 0.9mg/day, Naltrexone dose is 3.5mg/day.
Thanks for catching that.

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