Hello I am Simba

[Simba1992]

I am new here on this site. I was diagnosed with seronegative RA 2015 and have been controlling my RA so far with AIP diet, LDN and supplements. I am doing constant research on understanding my RA better. I am looking forward to hearing your thoughts and experiences😊

[munchybunch]

Hi simba. That's so interesting. Do u have a high cpp level? Does Ldn help. I have a v high ccp (225) and yet I have no symptoms. I've read a lot about Ldn and I'm finally starting it next week . I'm also trying to eat more fresh veggies etc. I d love to hear more details about what you do. I really want to avoid the drugs if poss!! Thanks

[Simba1992 in reply to munchybunch]

Hello munchybunch,

My CCP was 145 and the inflammation markers quite high, brain fog and fatigue when diagnosed wth a seronegative RA. So I needed to get the inflammation down. I was very unlucky, or maybe lucky, to fall in the hands of the worst imaginable bully of rheumies, who inspite of my poor condition gave me a push to do my own research by giving me an ultimatum of aggressive treatment or nothing at all. This is how I found the autoimmune paleo diet, LDN and the importance of certain supplements. I also found the antibiotic treatment protocol with minocykline.

Thought I would try without the minocykline first. In three months I felt nearly normal and inflammation markers the same. I would say 80% better. Then however the decrease in symptoms didn't continue even though the disease under control and no erosion. So I continued my research and found evidence that symptoms could be worsened by other underlying dysfunctions and deficiencies that the diet and LDN perhaps didn't address enough, especially hypothyroidism that is a common undiagnosed dysfunction in RA as well as estrogen-progesterone imbalance in favor of estrogen that causes ongoing chronic inflammation. Now trying to fix these and hoping for results.I am still working on my diet and trying to understand what exactly would work best for me. I don't exactly know the effect and role of LDN since the diet has always been alongside it but I am certainly continuing taking it, knowing it's mechanism of action that I can only benefit from. Hope it will help you😊 It will take some time to kick in in most RA patients. What is your dosage plan? Do tell us how it goes. Best of luck. xx Simba

[munchybunch in reply to Simba1992]

Hi simba. Can u pls tell me which supplements you take. Thanks

[Simba1992 in reply to munchybunch]

RA patients are shown to have a deficiency in magnesium, zinc, copper, vit B6, B12, vit.A, vitD3,vit.C, vitE, Q10 besides these I take glutathione, natural progesterone cream, Lugano iodine drops, choral calcium, Boron, Chortisol support, turmeric golden paste, probiotics, Colostrum. 😊

[Ktltel in reply to Simba1992]

Hi, I read Boron increases estrogen levels. Isn't this counter productive since you said you're estrogen high?

Stella

[Simba1992 in reply to Ktltel]

Havnt heard of that, have to look that up! Thanks😊

[Barbgalvin]

Never heard this before, what is LDN? or, maybe I am just having a foggy moment.

[Simba1992 in reply to Barbgalvin]

Something really worth looking into😊 You find all the info you need on these websites: ldnresearchtrust.org and ldnscience.org

Good reading. Simba

[Barbgalvin in reply to Simba1992]

Thanks Simba.

[cappygal]

Hi Simba1992 I recently tested anti-CCP positive and am terrified at what's happened over the last few months as I also lost my job too. Are you in the UK? I am looking into LDN from Dickson's Glasgow and also keen to go on minocin too. I've been also on the AIP diet (had to introduce gluten free carbs as wasn't going to the toilet enough) and supplements too. Could I ask how you went about getting on minocin - was this via your GP or rheumatologist? How have you found the LDN? Thank you in advance 🙂

[cappygal]

Sorry Simba1992 I think you might not be on minocin - is that right?