PS check your user name : )

I've seen a neurologist in Sydney, and was part of a clinical trial where I saw another and had a brain MRI. For me, it just ruled out any "traditional" neurological issues. The neurologists didn't find anything specific. However I do have memory issues, brain fog and visual disturbances. They all vary depending on fatigue and whether I've triggered POTS. The neurologist was Dr Stephanie Barnes. Lovely. Not a LC specialist but I'm not sure if anyone is.

How long did you get LDN for? I had to very slowly increase the dose as I had some sleep disruption etc. In fact I'm still slowly increasing. The effect seems to increase over time. They say to stay on it for about 8 weeks if testing it. You could also try the supplement COQ10. I tried it but it's hard to distinguish the effect from the other meds I was trying. Have you had a test for POTS?

The problem is that it is very individual and depends on your symptoms. For me, I have found that Low Dose Naltrexone and Serotonin both help with brain fog and fatigue.

LizBeth if you are in Adelaide you are lucky yo be near Dr Dennis Lau, one of the few dysautonomia experts in the country, and he has a good understanding of Long COVID. Worth a referral.

Sophie, I have neuro symptoms too. My MRI was clear, and even a test of my memory showed up OK, although I've got the attention span of Dory. I saw a neuro in person, who confirmed based on some in-person tests that I wasn't my usual self, but that "my brain was still there, just having trouble getting out". She was right and I've improved over time and with medications. All specialists said that my tests were normal until I got to Clinic 19, who had me do a simple POTS test which gave me an immediate diagnosis. Most specialists are still unfamiliar with Long COVID, and are really only able to confirm that there is nothing else going on (which is worthwhile). You need a specialist who understands Long COVID, and there aren't many, which is why I'm mentioning Clinic 19 all over this forum 😁. They do phone consultations which was a godsend for me. https://clinicnineteen.com.au/ For people in Adelaide - go to Dr Dennis Lau, one of the few dysautonomia experts in the country, and he has a good understanding of Long COVID

Deb it is definitely hard to find good medical support! I have found Clinic 19 useful. https://clinicnineteen.com.au/

It can take a long time but it does improve. Get checked by a cardiologist (just in case) and get a specialist who understands Long COVID (I'm with Clinic19 https://clinicnineteen.com.au/ ) Dont give up 😊

Yes it was recorded! You'll need to buy a ticket to access the recordings - drop a note to the POTS Foundation explaining that you missed the conference and I'm sure they will help https://potsfoundation.org.au/contact/ You can see the program here: https://potsfoundation.org.au/conference/ Finally, they have opened up the Foundation to associate members (patients and carers) because they need to get a sense of patient numbers when lobbying politicians. You can join here: https://potsfoundation.org.au/associate-membership/

P.S. if you aren't familiar with POTS, it's a common part of Long COVID, details here https://potsfoundation.org.au/living-with-pots/

Oh this is great news and great info Mia! Thank you!

So sorry to hear that Mia and hope things can improve for you over time - they often do with LC

I'm so glad you are already connected to Clinic 19. The relaxation and pacing strategies sound really smart, good on you. I have the CFS/POTS flavour of LC rather than MCAS, so different approaches probably suit. It's tough but you are doing really well to get a few things in place that help. Are you able to get out of the house (or bed) at all?

Hi Gareth - I've been stood down too. There's lots of us. It's a while since you posted, how are things now?

Hi there : ) I understand. I've had LC since 2022 and was bedbound for around 6 months, then housebound since. I also had to leave work and am only just starting to pick up a little paid work now (we'll see how it goes). This community isn't very active (I think people aren't familiar with the platform), but there is an active Facebook group at https://m.facebook.com/groups/301101014574843/ There are also various international support groups on various platforms (Facebook, Discord etc). I have had a good experience with medical treatment from Clinic 19, a private group of specialists focusing on LC. A lot of people on the Facebook group are trying them. They diagnosed me with post-viral POTS (a type of dysautonomia) and suggested some simple things that really help. They also put me on LDN for the severe fatigue and other issues. That has really worked for me, so I'm lucky there. Although I'm still not well, my quality of life has improved substantially. There is a long wait list but it's worth a try https://clinicnineteen.com.au/about-us You aren't alone and there is lots of good advice out there when you start connecting with patient groups. We are all tracking the research pretty closely and there is a lot of new information coming through all the time. Thank you for your health care work at the height of the pandemic in 2020. That was a scary time and everyone who understands COVID is immensely grateful. It may have disappeared from the public view a bit, but there are many many people who have been affected and who understand how very serious this is. Everyone in the LC community will understand all the challenges you describe as they are shared by so many of us. We understand the challenge of just attending to daily life, and I would like to congratulate you on being able to achieve what you do while feeling like garbage.

Yes, lot of symptoms returned for a short while after a booster. I think it took about a week, maybe 2 weeks to get back to baseline. I decided to get it because the risk of worsening with an infection is much higher. Hope you improve soon.

Its worth a try Steve! I had sinus inflammation prior to LC. Staying away from mould, and steam inhalation were both useful. The problem with this type of health condition is that there are so many possible issues going on. I've decided not to spend to much money or energy on any one approach at this stage. I treat an increase in symptoms as a warning signal to rest and refuel (sometimes easier said than done!). You might be interested in checking out this syndrome, which some people with LC experience. It doesn't sound like you have this but just in case: https://www.healthline.com/health/mast-cell-activation-syndrome#symptom

Hi there - some people have reported that they have LC-induced Mast Cell Activation Syndrome (MCAS). It might be worth checking things out with an immunologist if this looks familiar. https://www.healthline.com/health/mast-cell-activation-syndrome#symptoms There are symptomatic treatments to make people with this condition a bit more comfortable. This may not be you though - all your symptoms could have multiple other causes! But hives is a bit characteristic of MCAS.

Totally agree with taking it slow Cosma. Deciding to postpone your degree would have been hard but regaining your health is essential - good call. Re vaccines - yes, I've had my 4th vaccine while I had Long covid. I felt bad for a few days (I often get a reaction to vaccines, I have autoimmune issues). Then I was back to my current LC normal. From what Ive heard, some people improve, some people feel the same (like me) and some people feel worse (but thats the smallest group). I'm sorry I dont have the brain power right now to find the studies with the stats! I decided that the risk of feeling worse from reinfection was much higher than feeling worse from vaccination, so I went for it. Re antihistamines - Some people with LC *are* using antihistamines but I think thats if they have LC-induced Mast Cell Activation Syndrome (MCAS). https://www.healthline.com/health/mast-cell-activation-syndrome#symptoms

Beau you are definitely not alone with those symptoms. I dont have the blurred sense of self but I have heard others with LC describe just that. I definitely have neurological impacts, but these are mainly cognitive function. I did have a brief episode of depersonalisation (I think that's what you are describing) and its no joke, its a very odd feeling. You could try seeing whether a neurologist can make any suggestions. Sometimes this is actually a symptom of migraine, which is also a common LC symptom. Sometimes it is triggered by fatigue, so the resting you are doing is good medecine! Otherwise, I have most of the symptoms you describe, and they are definitely common witj LC.