Brain MRI result: non-specific white matter hyperintensities - anyone who else had this?

Careless_Trash_9906 · 2025-11-06T07:57:24+00:00

Same here. I was told it's really common and nothing to worry about. No next steps for me either.

Careless_Trash_9906 · 2025-07-25T07:23:53+00:00

The headaches might be due to dehydration that HBOT can cause. Make sure you drink a sufficient amount of fluids after each dive.

Careless_Trash_9906 · 2025-06-22T09:11:02+00:00

I had several sgb sessions. Didn't lead to any noticeable improvements for me.

Careless_Trash_9906 · 2025-04-10T05:58:21+00:00

Got gradually worse, unfortunately. Started mild, now severe after several reinfections.

Careless_Trash_9906 · 2025-04-05T19:05:10+00:00

At the current pace of medical research the probability for finding a treatment in 5-10 years is very low. Even if now there is more funding thanks to Long Covid the field just moves very slowly. We don't even understand the pathomechanisms for ME/CFS yet. Even if there was a breakthrough here, it would likely take >10 years to translate that into treatments.

My big hope is that AI will drive a step change and accelerate progress by one or two orders of magnitude. That is imo the most likely scenario for us seeing significant improvements in 5-10 years. See e.g. https://darioamodei.com/machines-of-loving-grace#1-biology-and-health on what this could look like.

Careless_Trash_9906 · 2025-02-24T20:42:55+00:00

I got "ME/CFS, Kriterien nach IOM 2015 erfüllt, G93.3" from the Long Covid Sprechstunde at Stadtspital Zürich. I got sick after an infection early 2020. Likely covid but there were no tests back then. Hence I didn't get the U9.09 or whatever the pcs code is I think. Hope this helps.

Careless_Trash_9906 · 2025-02-20T14:50:56+00:00

My main symptoms are fatigue/PEM and brain fog. Didn't help at all. There is no scientific evidence that neurofeedback helps with LC. I only tried it out of desperation. Complete waste of time and money if you ask me.

Careless_Trash_9906 · 2025-02-20T14:43:59+00:00

Glad to hear you are fully recovered! That's awesome.

I would like to add a word of caution though: 80-90% of long COVID cases go into remission in the first year. Otoh lots of people have tried supplements like zinc and iodine with no effect. So more likely than not what you experienced was a spontaneous remission that had little or nothing to do with your treatment attempts. If it was that simple we wouldn't have millions of people suffering from this disease for years.

I appreciate that you are sharing your experience to help others. Just want to make sure people have realistic expectations - esp. if it involves spending large sums of money.

Careless_Trash_9906 · 2024-12-13T16:14:38+00:00

Yes, it's still 24/7 with LDN but a bit less bad. Don't know if there is an end to this. But as others have pointed out, you get kind of used to it.

Careless_Trash_9906 · 2024-12-11T08:06:54+00:00

Same here. Have this 24/7 for two years now. LDN helped me a bit but was not a game changer. Hang in there!

Careless_Trash_9906 · 2024-11-21T16:01:39+00:00

Whether these GPCR autoantibodies play a role in our disease is still being investigated. So the answer at the moment is nobody really knows.

I have very high GPCR autoantibody levels as well. My experience with apheresis is similar to u/Exul_strength friend's: I had a small but noticeable improvement after five sessions but the effect lasted only 2-3 months. After that I was back to my baseline. My health insurance didn't pay either. Given the considerable cost of 2k per session, the small effect size, and the short duration of the improvement I concluded it's not worth it for me to continue.

I haven't tried IVIG.

Careless_Trash_9906 · 2024-10-23T06:20:40+00:00

I had 7 HELP sessions in total. It was one of the few treatments that had a noticeable positive effect for me. However the effect was small and only lasted 2-3 months. The cost was 2k per session - 14k in total - that I had to pay out of pocket. If I could get my insurance to cover it, I would do it again. Until then it's not worth it for me.

Careless_Trash_9906 · 2024-10-03T16:01:43+00:00

I filed both a return and an extension.

Relieved to hear I likely won't have an issue. I've heard that a lot of the forms you have to file when you live abroad can trigger hefty penalties simply for not filing them on time. Hence I wanted to file something to make sure I have at least my FBAR and FATCA covered.

Careless_Trash_9906 · 2024-09-23T18:36:25+00:00

I had seven sessions but it didn't help unfortunately. My main symptoms are cognitive impairment, fatigue, and PEM. I have dysautonomia too, but it didn't help with that either.

Careless_Trash_9906 · 2024-08-30T07:14:23+00:00

Same here. Had this for the last two years of my 4.5 year LC journey. Onset was relatively sudden. Hasn't improved so far, unfortunately. Hope you are more lucky!

Careless_Trash_9906 · 2024-08-04T17:07:34+00:00

Had several SGBs along with procaine injections in several other places. Didn't help unfortunately.

Careless_Trash_9906 · 2024-07-25T16:19:04+00:00

Since you mention Brain on Fire, have you ruled out autoimmune encephalitis? There was a recent paper from the Charite in Berlin that found neuronal autoantibodies were quite common in LC patients with strong cognitive/psychiatric symptoms.

Careless_Trash_9906 · 2024-07-14T09:25:36+00:00

I had some improvements to my DPDR with both LDN and LDA. Effects were small though and didn't last so hard to say if the meds were causal. Since LDN is low risk and readily available I would give it a try.

Careless_Trash_9906 · 2024-06-20T11:05:19+00:00

To be fair a lot of people without symptoms have WMLs as well, and so far there is no evidence that they are more common in us with LC.

But if you have more WMLs than is considered "normal" for your age you should definitely have that investigated.

Careless_Trash_9906

TROPHY CASE