LDN and minocin

[cappygal]

Hi everyone, I'm new to this forum and wondered if anyone has had any experiences with using LDN or minocin specifically that you could share? Especially if CCP positive? Thank you in advance...

[helixhelix]

If you put LDN in the search box top right you'll get the list of previous posts about it.

[cappygal in reply to helixhelix]

Thank you

[cappygal]

Struggling to find anyone with experiences with LDN...

[Simba1992 in reply to cappygal]

Look up Simba1992. I have a lot of experience😊👍🏻

[Simba1992 in reply to Simba1992]

If you have questions I will be glad to answer them😊

[cappygal in reply to Simba1992]

Thanks Simba1992 - you sound so similar to me. I have also been on the AIP and taking supplements and considering LDN and minocin (but not sure if both can be taken together?).

Wondering about LDN - did you go through the compounding pharmacy in Scotland? Have you had any side effects? I'm finding getting restful sleep is hard, my adrenals are just really worn down due to all the worry and stress. xx

[Simba1992 in reply to cappygal]

Hello Cappyg,

I do have a lot of things to tell you that you might find useful. I am however a bit busy during the day but will get back to you in the evening. 😊 xx Simba

[cappygal in reply to Simba1992]

Thank you - very much appreciated. xx

[Simba1992 in reply to Simba1992]

It's ok to take mino with LDN, many do.

[cappygal in reply to Simba1992]

Thank you - that's good to know 😊

[Simba1992]

Hello again cappygal,

I'll try to make it short and clear. Feel free to ask me if sounds muddled😊.

As you have read I started out with AIP+LDN+ supplements, left Mino waiting.

Effects: After 3m 80% symptoms gone. After 6m still the same, weightloss started to worry. After 12m still loosing weight. Started to experiment with eating less meat and introduced legumes instead. Result was not good. AIP as a diet really never left me satisfied, the same could be said about the plantbased diet where fat was left out and the importance of fresh vegetables stressed. I was tired and symptoms were creeping back. I was doing something terribly wrong which my bloodwork also confirmed. I was hypoglycemic with high cortisol. My adrenals were on high gear to the point of exhaustion.

I found the explanation to my dilemma through the work of Dr. Ray Peat who in his articles so very well could explain the biochemistry of my current state. It was evident that my glucose metabolism was not working as it should and the diet had only made it worse. My liver wasn't storing glucose normally and when this happens the stress reaction is turned on and the adrenals start eating away on tissues ( weight loss and muscle waist) to get the needed food for bodily functions. The reason for this is usually found in thyroid dysfunction. I had all the symptoms for hypothyroidism and since Ray Peat is a specialist on thyroid function I have now followed his instructions for dietary measures to support my glucose metabolism and through this decrease my inflammation and symptoms. It is really working, I'm gaining weight, don't need pain meds, have energy and stiffness has subsided 50%. And what's even more important I've started to enjoy eating again!

So what was and is the role of LDN in all this? I think, in the beginning when the positive effects of AIP had probably to do with estrogen reduction(which is always antinflammatory and in fact probably seems to be enough for many that have lasting benefits of AIP), it was in fact supporting this healing. In the beginning I did have unusual dreams but then I felt my sleep became more restful and deep. I believe LDN is a good support when other things are in place in your body. For me I think I needed to get the right support for my thyroid and my estrogen-progesterone balance so maybe LDN will now have more effect. Hard to say what is what since I've been taking it all along and will continue.

So what I have learned is that picking a diet or doing changes in your diet is a good beginning but you need to check your overall health first so that you really pick a diet that supports your body and not one that works against you, like I did. This is when you get the benefit from LDN. And I have also learned how important it is to listen to your body not just to what is said about a certain diet. I never liked AIP and I should have listened😊

Yes LDN is sent to me from Dicksons pharmcy in Scotland. Works really well.

[cappygal]

Thank you so much Simba1992 - it means so much to be able to share experiences on here, as I've felt really alone and very scared over the last few months, trying to figure things out. I, like you, have been following the AIP (Paleo but stricter, as I had a food intolerance test which included some fruit & veg, gliadin, soya, yeast etc) since following the diet approx mid June and have lost a worrying amount of weight in a short space of time and am keen to put some back on. I have been unable to go properly to the toilet for some time due to the diet (sorry for too much info!). In terms of legumes such as lentils, they are rich in lectins which I now realise are highly toxic.

So I am really interested in how you improved this as I have all the symptoms of what you describe - adrenal stress. Did your GP diagnose this, as I suspect I may have this? What were the key measures for improving glucose metabolism? I will look up Ray's work. I have had to add a gluten-free cereal (not on AIP) as I was simply craving carbs. I was so nervous adding it. Plus I was also craving sugar - though I am sure I cleared any candida, I do crave some sugar!

It's great to hear that the tweaked diet and LDN has given you benefits - restful sleep and energy is something I am really struggling with at the moment. Do you take it at night and are they able to post it to you? xx

[Simba1992 in reply to cappygal]

Your situation sounds very much like mine. What you probably need is a different diet to get your metabolism back on track. Google

raypeat.com. On this website you will find the diet and how and why it works. There is also a very knowledgeable forum where people are very helpful and have a thorough understanding of these problems. You'll get a lot of help there if you want to😊.

I get the LDN posted to me, and I take it around 10-11pm, 4,5mg

When were you diagnosed? Are you on any medication?

If you have any questions I will be glad to try to help you. You can also PM me if that feels easier. Take care, and keep me posted,xxSimba

[cappygal]

I also meant to ask - did you tell your doctor/rheumatologist before starting LDN?

[Simba1992 in reply to cappygal]

I have talked about it with my GP. I haven't had a need for a rheumy since I was diagnosed since my line of treatment is not supported here in France. I am more interested in working with an endo who specializes in thyroid and adrenal problems.

[cappygal in reply to Simba1992]

That's interesting as everything about RA seems to point back to stress - physical, emotional and mental. So the link to adrenal stress and managing cortisol is absolutely key?

[Simba1992 in reply to cappygal]

In my situation, it was evident that my adrenals were overstressed which was confirmed by the high cortisol and hypoglycemia showing up in blood test. Ray Peats diet takes down cortisol and physiological stress through giving the body right fuel for energy production, normalizing the metabolic rate. It has had this effect on me, so far at least.

[cappygal]

Thanks Simba1992 😊 Our situations do sound very similar. I'll PM you tomorrow as I am keen to chat more. I will take a look at Ray Peat's site - have had a quick look online and it seems very interesting - some fascinating articles on there. It indicates that grains are allowed on the diet if they are treated - does that mean gluten-free? Also a mention of sugar - are there any particular types/sources recommended? xx

[Simba1992 in reply to cappygal]

I think you should really have a closer look at the diet. Put Ray Peat diet in the serch box. Ray Peat does not allow grains. Gluten is not good. Rice once a week ok. Nightshades except for potatoes are out, nuts and seeds too as well as legumes. Dairy is in as orange juice several times in the day. Good protein 150g daily. Lots of fruits. And what is wonderful for me, Coffee! All food with PUFAs should be avoided. This is just skimming the diet. AIP diet was a high protein, high fat, low carb diet with lots of veggies. Ray Peat is about high carb, good fat, high good protien lots of fruits with the goal to normalize your metabolic rate. Look up metabolic rate, you can calculate your own metabolic rate which tells you a lot about how your metabolism is functioning. Take your time and study Peats articles. If you want to join the forum you can look up what experiences those with RA have had. Take care.😊xxSimba

[cappygal in reply to Simba1992]

Thanks Simba1992 I will look up the diet for more info and will PM you in full this evening. I'm looking into the forum -- I see that you have to pay. Have you found it really helpful? When you say PUFAs are you referring to Omega 3s and 6s too? As I am taking a Krill oil supplement and eating oily fish? xx

[Simba1992 in reply to cappygal]

I didn't pay anything?! Really strange🤔

[cappygal in reply to Simba1992]

I think I was looking at the membership - the forum seems to be accessible 🙂

[Simba1992 in reply to cappygal]

This is what Ray Peat writes about PUFAs. Polyunsaturated fats.

raypeat.com/articles/articl...

[Bleakin]

Hi - I've just been reading your post on LDN. I'm curious if you have started taking it, and if you went to a practioner to get it ( there are a few in London who work on autoimmune & leaky gut), or whether you just got it from Dicksons/ Glasgow? Also, did you let either your GP or rheumatologist know?

I'm Seropositive, I had quite a high CCP but had to stop using MTX Metoject due to bad side effects with increase sense of smell (hyperosmia) & pain in lungs & Hydroxycholorquine made my arms very itchy. I have managed to get my ESR down with Paleo diet with some diary, but I am now getting random flares. I get major sugar cravings also, & have to eat dark chocolate. Menstrual cycle plays a part in cravings.

On diagnosis (2016) I went to a nutritionist in London who helped me with vitamin supplement based on a full diagnostic blood test and started taking Magnesium/ liquid vitamin D, L-Glutamine for gut, high strength fish oil. Lambert's Oregano oil tablets. One thing I think that helps is taking the probiotic Symprove ( supposed to be the only probiotic that reaches the gut alive) I take this every so often as a maintenance dose.

[cappygal]

Hi Bleakin I did order LDN from Dickson Chemist in Scotland. I haven’t taken it yet though but am thinking about starting it and yes I told my rheumatologist but they didn’t know much about it. You may benefit from it if you’re reacting to the drugs they’ve prescribed, which isn’t a surprise - they have so many known side effects. LDN by comparison has very few.

Good to hear you are finding the Paleo diet helpful. I follow it too, but no dairy, soya, yeast and other foods. Have you had a food intolerance test? I did York Test and it was worth every penny.

The only thing I struggle with cutting out is sugar, like you. I find that so difficult. Dried fruit seems to help and dark chocolate too. The missing piece for you may be the food intolerance test. Mine showed I was reacting to some foods I ate quite often, but healthy foods like 🥑 avocado.

Have you tried chicken type II collagen? I believe this helps and I’m going to start taking mine again. Your probiotic sounds good. I take one too, feel it definitely helps. There’s definitely a gut-immune system link. Which fish oil do you take - is it Krill?