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DiscussionWhat helps longhaulers dealing with Chronic Fatigue?
Post-COVID Recovery & COVID-19 | Last Active: Aug 15, 2024 | Replies (43)Comment receiving replies
Replies to "I have been in the NIH Long Haul research program since 2020. I have been diagnosed..."
I have been on LDN - the pills - for about 3 months. I have found it to be a miracle worker. I am now walking distances without breathlessness and most days, I have more energy. I moved from taking the LDN with dinner because of weird dreams and sleep disturbances and now take it each morning with breakfast. LDN has not taken care of all my Long Covid/CFS and fibromyalgia symptoms but I do feel so much better. I titrated up to 4.5 mg. I had balance/dizziness problems and gastro issues before LDN and continue to have those symptoms.
Sorry, LDN is Low Dose Naltrexone, 4.5 mg. It's a compounded prescription.
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.
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.
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"
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Learn to pace yourself and accept it....3yrs later and i am half the man i was.
I no longer can do a list of chores in one day....I break things that need to be done into doing 1 a day.
If i do too much i crash and get worn out and get so sore it's painful to just to stand up from a chair or sofa and walk.
At first i fought it, But after paying the price of doing too much i gave in and accepted it as my new normal.
Accept that you can only do what you can do.
I am hopeful as research comes along we will all be able to get back to where we were Pre Covid or at least
close to where we were.
For reference im a 55 yr old male....Who completely remodeled his basement in 2019 and i look at it now
and say ....No way could i even attempt that now.
Try to do one little chore a day and pat yourself on the back when your done.
Hang in there!!