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Side Effect or Filler Effect of LDN?

bertiedog

Senior Member
Messages
1,738
Location
South East England, UK
I have definitely proved this by having some yoghurt immediately after and following on with some weak tea. By doing this it has stopped the more or less immediate reaction. The syrup seems to be quite sticky so I guess it might have some sort of sugar in it and I am very sensitive to anything with sugar. I am prediabetic so that might also be something to o with this reaction. I gave up all sugar over 10 years ago so this might be the explanation.

Regarding the LDN itself it seems to give me great energy even if I am feeling crap with migraine. I also seem to have a very good mood. I cannot blame the LDN for the migraine at this stage because I get them very regularly anyway. This seems to be due to me running short of my steroid over night so I am going to try taking a tiny dose of hydrocortisone before I go to bed. It all gets very complicated when one is also hypothyroid and also has adrenal insufficiency.

Pam
I checked with Dicksons the pharmacy that makes the LDN syrup and they gave me a list of the ingredients. One of them was glycerol and there was also a tiny amount of saccharin so I think its possible that these don't really agree with me causing blood sugar issues which I have anyway (very sensitive to any sugars).

I stopped the LDN for 3 days because of severe intractable migraines and restarted yesterday, possibly did a bit too much and ended up aching all over and feeling like I had the flu. Lasted till I went to bed and felt horrendous when I tried to walk the dog. Kept thinking about vertigo I felt so queer and this made me hugely anxious.

Today I haven't taken any and its been a better day, not brilliant but I definitely don't have the flu or a virus.

Pam
 

mermaid

Senior Member
Messages
714
Location
UK
Hi again - if you find you cannot tolerate the LDN syrup (which I have never tried though I have had tabs/capsules and cream in my time!) it might be worth trying the sublingual drops instead. I haven't got a full list of contents but it seems to be v concentrated and I assume has less additions (not sweet anyway).

The downside is that they cost more (£27) though at the rate I am using them they will last more than a month, though I don't know yet how long they are active - I need to ask that one!

I am back on the LDN, on the sublingual drops and decided to try it at night time again. So far not too bad. I am getting a disturbance in my sleep but did get back to sleep Ok last night and can't really remember much. Stomach OK anyway.
 

bertiedog

Senior Member
Messages
1,738
Location
South East England, UK
Thought I would give a brief report as it is now 5 weeks since starting. I still cannot seem to go above 1.1 mg. Last Wednesday, 4 weeks after starting I had a very strong negative reaction for 4 hours to 1.4 mg. I felt a lot of pressure in my head and was quite lightheaded and dizzy. It made me anxious cos I had to go out to order some curtains at a shop about 5 miles from home which meant I had to drive there. The horrible feelsing wore off after 4 hours and then I was better. The next day I went back to 1 mg without any problems but I started to get the bad heads so stopped for 2 days for things to settle.

Restarted yesterday at 1 mg and had an excellent day and today was good too. It definitely gives me energy and also I get the good mood. From the end of last week I also started on a herbal tincture to kill off the Lyme and infections but also there are herbs in it to support my body in general. That was probably why my heads weren't good and why I stopped the LDN to ensure it wasn't that. Feeling so good yesterday was very unexpected and so was today but yesterday evening I still got a bad head and it was there through the night so I needed 50 mg Sumatriptan to get it under control and some Naproxen. Normally I would have been crap all day but by midday I felt a lot better and had a good afternoon even though I was busy helping out at the Visitor Information Centre.

I do wonder how common it is to get a good response on just 1 mg of LDN?

Hope you are doing better @mermaid, my sleep hasn't been affected at all because I take mine in the mornings and yet still get a good affect.

Pam
 

mermaid

Senior Member
Messages
714
Location
UK
Sadly I have decided that LDN isn't for me, Pam. Glad that you are making reasonable progress and I wish you well. I know of people anecdotally who have been helped by v low doses of LDN such as 1ml.

For some reason the liquid kind, even the sublingual causes me severe issues with my gastritis after around 5 days in. Clearly, the tiny bit that trickles down my throat is enough to do it. Anyway, it seems to strip away my stomach lining, as I have tried it numerous times now, with both the sublingual or liquid form made up from capsules. It takes me days to get it to heal again, and I feel dire while this is happening.

Also I do not want to go back to the transdermal cream form, as I had bad side effects, and also apparently there is new research that indicates that it doesn't work in the same way as the other forms (it blocks the receptors for too long).
 

bertiedog

Senior Member
Messages
1,738
Location
South East England, UK
@ mermaid I am sorry to hear this but LDN definitely doesn't work for everyone. I must be lucky because it hasn't affected my gut at all (I have low stomach acid and have to take betaine with meals). If anything it has helped me with the constipation I would have at times. It hasn't done anything for the migraines unfortunately but they probably haven't been quite so painful which is something I suppose.

I have started treatment for Lymes disease having tested positive 3 weeks ago at Infectolab and thankfully I am tolerating the herbs ok but did have a huge herx after a massage last Saturday so I do feel at least things are starting to go in the right direction but it is likely to take well over a year.

It is truly wonderful to have such good energy throughout the day and I am very grateful for that.

I do hope that you find something else which will help you to feel a lot better.