What helps longhaulers dealing with Chronic Fatigue?

Posted by seidholz @seidholz, Aug 13, 2024

Having just been through a battery of tea s for my NIH study at UNMC and a visit with my GP, it turns out that there is no answer for my CF, brain fog and racing heart. I have had Covid 4 times and no real serious symptoms other than fatigue and congestion. Blood work has been normal as well as brain scans, heart tests etc.
I used ozepmpic injections 6 weeks ago and eliminated refined sugar and junk food from my diet and dropped 20 lbs hoping that would help but didn’t notice any change in the fatigue.
my GP suggested citalipram which I just started but other than than he had no suggestions. I still stopped drinking 2 years ago and was hoping to enjoy a better life and now this has gotten in the way.
Any thoughts or ideas?

Interested in more discussions like this? Go to the Post-COVID Recovery & COVID-19 Support Group.

sanDGuy | @sandguy | Feb 24 12:47pm

In reply to @jsg12206 "I use a Biomax900 series from this manufacturer, the only FDA Certified RLT panel that has..." + (show)

RLT seems to mostly be used for skin conditions.

From the Cleveland medical clinic
"There’s no scientific evidence to support red light therapy use in weight loss, cancer, cellulite removal or mental health conditions like depression and seasonal affective disorder (SAD)."

Can you provide a link to the peer reviewed journal article that discusses its use for conditions like post Covid?

rissanz | @rissanz | Feb 24 1:07pm

In reply to @carlosmayo "Hello. I too have long covid with intense fatigue. What has helped me is low dose..." + (show)

That is great to hear. I thought low dose naltrexone and abilify were doing similar things. So can be taken jointly?

I'm on low dose naltrexone, it helped me to be able to get out of house for leisure. But only for couple of hours. So I'm looking for treatments that allows me to do more.

Thank you @carlosmayo

carlosmayo | @carlosmayo | Feb 24 5:02pm

In reply to @rissanz "That is great to hear. I thought low dose naltrexone and abilify were doing similar things...." + (show)

Hi. Yes you can take the two together. My Stanford LC/ME/CFS clinic started me on LDN and after a number of months the dose settled at 3mg/day. They then started me on Abilify - again at a very very low does (0.1mg/day) and had me slowly work up. I have been taking the two together ever since ... now two years. For the first year and half my health improved about 80%. Then for unknown reason it got worse but I am still 60% better than I was - still a life changing improvement.
Happy to help with any more questions. Good luck to you.

rissanz | @rissanz | Feb 24 6:11pm

In reply to @carlosmayo "Hi. Yes you can take the two together. My Stanford LC/ME/CFS clinic started me on LDN..." + (show)

Thanks! That's great to hear. When I'm well I'm about 40% capacity now. I had a bit of relapse as I changed LDN from capsule to liquid. It seems liquid doesn't work for me.

Anyways, I'll stabilise on LDN capsule and ask my GP for new prescription. Would you know any research publication that talks about this protocol?

Are you taking any other medication or doing any treatment for fatigue or PEM?

Thank you!

carlosmayo | @carlosmayo | Feb 24 9:58pm

In reply to @rissanz "Thanks! That's great to hear. When I'm well I'm about 40% capacity now. I had a..." + (show)

Hi. I dont know about research on Abilify. Maybe the Stanford clinic website has something ...
You bring up something I have been wondering about - the efficacy of the liquid LDN compared to capsules. How do you know the liquid does not work as well for you? I used to use capsules, but now dissolve a 50mg tablet in 50ml water and take 3ml solution with an oral syringe ... saves over $800 a year in compounded pharmacy bills but I have wondered if it works as well.

Other treatments. When I got worse again I started taking colchicine (0.6mg/d) and plaquinil (300 mg/d). Both have helped some with fatigue and headaches, not as dramatic as LDN or Abilify, but still helpful. Both from the Stanford clinic.

rissanz | @rissanz | Feb 25 12:40pm

In reply to @carlosmayo "Hi. I dont know about research on Abilify. Maybe the Stanford clinic website has something ......" + (show)

Thanks!

Please don't compound the medication by yourself. One theory why i didn't respond well to liquid LDN is that the new pharmacy i was using didn't know how to do it properly.

So I'm going back to capsule and back to previous pharmacy who are specialised in compounding. Liquid was half of the price of capsule, but if doesn't work, ended up costing me a lot. Probably i could get liquid from this previous pharmacy, but i didn't want experiment anymore.

I'll google around for research reference. Thank you!

rissanz | @rissanz | Mar 11 7:09pm

In reply to @carlosmayo "Hi. Yes you can take the two together. My Stanford LC/ME/CFS clinic started me on LDN..." + (show)

Hi Carlos, my GP is looking to prescribe me Abilify. She was asking for the treatment protocol. You mentioned that you started on 0.1mg, how fast did you increased the dosage? Time and dosage wise.

And what's the dose you are taking now? I imagine, that like LDN, the sweet spot very variable per person.

Thank you!

diverdown1 | @diverdown1 | Mar 12 8:11am

In reply to @seidholz "I have been in the NIH Long Haul research program since 2020. I have been diagnosed..." + (show)

Hi,
I tried low dose Naloxone and it helped some, but I was recently put on Cymbalta. It has helped a lot. It is a serotonin norepineprhine reuptake inhibitor (SNRI). It has also helped with my depression and anxiety. It is not for everyone, but I know that it is used for chronic fatigue. Hang in there.

vostie | @vostie | Mar 12 9:37am

In reply to @seidholz "I have been in the NIH Long Haul research program since 2020. I have been diagnosed..." + (show)

I have used LDN for three weeks now at 1.5 mg and have seen my fatigue inch away a bit. I have more energy and have been able to double the distance of my short walk. I can still get laid low if I overdue it so am trying to moderate my activity even though I feel better. A side benefit for me is that I am losing my food noise at night...so no craving after dinner.

I am now moving to liquid LDN so we can titrate the dose up and see how I do. Will be interesting to see if I do not progress on the liquid and have to move back to the pills. The compounded pills are expensive and not covered by my insurance...the compounded liquid is covered.

rissanz | @rissanz | Mar 13 11:23am

In reply to @diverdown1 "Hi, I tried low dose Naloxone and it helped some, but I was recently put on..." + (show)

Naloxone? That's interesting. Does it work like low dose naltrexone?

View More View Less

Please sign in or register to post a reply.