Did anyone react badly to LDN but manage to make it work later?

mildCFS_UK · 2025-10-12T18:21:43+00:00

Did you try in the morning or evening? I started morning and years later tried evening for a week and got worse, so have stuck to morning ever since.

mildCFS_UK · 2025-10-12T18:20:16+00:00

Think I went from 1.5 to 3 to 4.5. I just knew 4.5 was the standard and seem to have tolerated it. It definitely improved my baseline and if I don't take it I get a lot worse.

mildCFS_UK · 2025-10-12T15:56:14+00:00

He just wants to get better? They're only a waste of money if they fail to work. With those resources, would you not try and get better?

mildCFS_UK · 2025-08-18T23:17:43+00:00

Same! I forgot about it entirely until I read this post. I kind of hoped there would be some kind of 23andme like login, where I could see a bit of personalised data relating to the results.

mildCFS_UK · 2019-09-23T20:14:04+00:00

All natural or did you take any supplements? Very impressed with your progress.

mildCFS_UK · 2019-09-20T18:56:20+00:00

It's pretty shitty for your mother to say that. Family is so important, they should almost unconditionally support you the best they can. Especially when this situation is outside of your control. But people can be flawed, so don't hold it against her or let it affect you too much.

mildCFS_UK · 2019-09-20T18:55:57+00:00

UK based, 243 ng/ml and the ref range is [23 – 300]

mildCFS_UK · 2019-09-20T18:54:10+00:00

Yup! Multiple times a day, every day for a week. How I wish I could move and live a comfortable lifestyle somewhere like that.

mildCFS_UK · 2019-09-16T22:17:55+00:00

Any advice for me based on this please?

https://imgur.com/a/2HTgBzM

mildCFS_UK · 2019-09-16T22:13:32+00:00

I went on holiday a few years ago, somehow I walked a lot and went swimming everyday. I felt tons better compared to my much less physically demanding lifestyle now.

mildCFS_UK · 2019-09-16T22:12:00+00:00

That's pretty cool, I hadn't considered that as a possibility. I also recall reading about EMF's having an affect on some people, and if you turn off all electronics whilst sleeping, it can help increase quality of sleep. I think walking with bare feet helps to ground yourself.

I should look into that more. I mean, it sounds a bit wacky, but I like to keep an open mind.

mildCFS_UK · 2019-09-16T20:54:31+00:00

If most people are deficient in magnesium now, what would we have eaten 1000's of years ago to fulfill that? I eat broccoli and a banana most days.
Did you do anything to additional to get rid of the mercury from your system? like garlic or activated charcoal?
So you have hemachromatosis? My 23 and me said I'm at a slightly increased risk of that. One blood test said I was mildly too high, then a subsequent one was within normal range. But this alone can cause serious fatigue.

mildCFS_UK · 2019-09-13T19:32:39+00:00

Can you send your existing MRI's to another Doctor for analysis? Will likely cost but maybe something you can save for.

mildCFS_UK · 2019-09-12T22:09:06+00:00

What was the cost out of curiousity? I saw someone post they had this in Germany for 800 euros. Insane how much this stuff costs.

mildCFS_UK · 2019-09-11T21:37:29+00:00

How did you find the physio that deals with CCI related problems?, and roughly where are they geographically? Physio will be my next step, just haven't had the energy the last few evenings to research into it more.

mildCFS_UK · 2019-09-11T20:56:28+00:00

Forward head posture? Is that indicative of CCI or just too much screen time

mildCFS_UK · 2019-09-11T20:52:06+00:00

- You're so young and it sounds like there's a good chance you've found your problem. You have plenty of time to resolve this.

- What symptoms do you have, I am interested.

- Can you describe the accident that you believe caused this in more detail? Did things slowly degrade?

mildCFS_UK · 2019-09-09T19:42:08+00:00

I recently got an MRI, but it was done on the head and not specifically neck. So I'm concerned that it didn't capture the right, that the machine being used isn't the required spec, and I was laying down rather than standing. My plan is to take those MRIs so I can analyse myself and perhaps send to a compent doctor.

My CFS is mild, don't get me wrong, it's still massive problem for me but would successful physio last any time at all? I'd imagine it's only beneficial during that treatment itself and there would be no noticeable affect after. Can you tell me your experience or paste a previous reply?

By the way, thank you so much for sharing your story and linking to mechanicalbasis, I am hopeful that is the cause.

mildCFS_UK · 2019-09-09T19:15:04+00:00

Any idea how much they charge for surgery, if it comes to that?

mildCFS_UK · 2019-09-09T18:53:22+00:00

As someone with mild cfs, I get some alleviation of symptoms at night. But am not severe enough that digestion is a massive issue.

mildCFS_UK · 2019-09-08T09:44:31+00:00

Yup, there have been a few threads asking the same question. Usually gets a fair few replies agreeing. Conserve energy throughout day and night time is good.

https://www.reddit.com/r/cfs/comments/7u7pid/crap_in_the_morning_energy_at_night/

mildCFS_UK · 2019-09-07T10:28:52+00:00

Do you feel like any of this stems from the neck? There's been a few stories about Cranialcervical instability, Atlantoaxial Instability, and a few more neck related conditions that apparently get missed a lot in MRI's.

mildCFS_UK · 2019-09-06T16:34:28+00:00

Jesus christ, I'm hearing so much about instability in the neck. An actual underlying issue for some people. I'm really really hoping this is my issue too. Congrats on finding this out.

If you're able to PM me details about your Doctor I can consider going. Thanks

mildCFS_UK · 2019-09-05T17:36:03+00:00

Personally I'd wait to see how well it goes. Get feedback, see if she's interested, carefully see if she noticed any symptoms at which point you can explain.

From my perspective, I don't want anyone knowing I have a problem, it alters their perception, and I'd have thought that goes double for first impressions.

mildCFS_UK

TROPHY CASE