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My visits with my rheumy scared me to death… telling me about all the joint destruction I had already experienced, etc.
She denied that food and AP could help my RA.
Instead of taking my rheumy’s advice, I changed my diet and did AP anyway, and I have been in remission for about a year (it took several months on AP to reach this point).
There is hope that AP will help you! I was skeptical at first, considering that AP only helps some people, so I probably wouldn’t be one of the ones it helps. But I was wrong.
Keep it up. Take courage. AP works for many people.Had moderate RA for 3 yrs.
I’ve been on Mino for 14 months now.
I have been in total remission for about 12 months (Praise Jesus!!!).
I tapered down on my mino for the last 9 months.For one months now, I have only been taking Mino (100mg) 1x/week.
I want to quit this stuff and finally have good GI health again.
I know I risk relapse and it might be harder to get rid of RA if it comes back. But…So…
what is a good maintenance dose?
what is to keep me from just quitting mino altogether?
I never had a herx on mino–maybe I never had an infection or it is totally taken care of. Does that give me any more grounds to stop mino?Thanks for any help you can give me!
well… good news!!!
I started brushing my teeth with grapefruit seed extract . If I get a stiff metal object, I can gently scrape the black splotches off my teeth after I’ve brushed with GSE and water!
I noticed the splotches are all in the harder-to-brush areas. I think it is just bacterial overgrowth or something. I’m so excited that I can keep taking this amazing minocycline. I’m glad to be able to do anything once again–and have a white smile!! =)
So I haven’t read every comment here, but I have to give my hearty AMEN!
AP WORKS!!! Just 2 months on this stuff and I can squat on the floor and work all day long… wow!!
I thank God for bringing me to this website and helping me find this freedom from RA!I’ve been on mino 2 months now. Every few days I’ll get shooting little pains in my joints–it reminds me of the symptoms I had at the very beginning of my RA experience–but it only bothers me a few minutes and then goes back/comes away for the day. I also will get muscle tension in my back and stuff like that. This is the biggest herx I can think of that I’ve experienced, though I feel awesome now symptom-wise. I use a sauna 2x/week… it took away the back tension last week =)
if you want to detox, a far-infrared sauna will really help–be wary of cheap saunas though!!This makes me excited because it is exactly what I have found in my own case… 2 mos on minocycline and I am nearly stiffness free all day long, every day! 2 months ago I would have guaranteed you I would never squat again in my life–and I am squatting often these days, working with my little siblings. Seriously, I am shocked at how well this has helped me. I was hesitant to try it for 2 yrs, and I am so thankful to Jesus that I finally started the abx!
So I would encourage everyone to try minocycline!!!
I have found 2 side effects bothering me: 1)a black hairy tongue that goes away when I brush my tongue with grapefruit seed extract every other day 2)teeth that look like I have never brushed once in my life and even 2-3000 mg vit C/day isn’t helping =(I just started minocycline a month ago… I have never felt so awesome since before I got RA at age 17, three years ago! Still visibly swollen in some joints, but totally loose all the time… no stiffness! Yipeee!! God was good to me, bringing me across “the road back”!
it didn’t work so fast for me, but it works nearly as well now that I have been on it a while… if I take it too late in the day for a week or so it will make me feel awful. I have to be consistent with taking it at the same window of time every day. It is awesome!
I had braces for three years or so before I began having RA symtpoms. I got my braces off a few months after noticing severe joint swelling. I never thought the two were related at all. Braces are usually pretty harmless, and I kept my teeth real clean anyway (only one cavity related to the braces!!!). I wouldn’t be too worried if I were you. I’m sensitive to toxins as well, and I don’t remember anything when I got braces. It was in my pre-RA days, but I’m still living in the same body!! =) If they would hurt my now, I bet I would have realized it then, and I didn’t notice anything bad about them.
I do want to encourage you that you’re the “sick” person! If you believe a treatment is good for you, you are the person who will benefit, not your doctor. You don’t have to make him happy. I hope you can find the right things to help you feel well!
My elbow swelled real bad and is still inflamed. I can’t straighten it as far as I used to, but on better days, I can get it near straight. i think the amount of swelling on a given day determines how far it can bend. Hopefully now on AP the swelling will go down and I will be able to straighten it fully!
I do have a popping sound in my knees whenever I go up stairs, seems to be getting worse as time goes on–and it’s been chronically swollen 2 1/2 years. I don’t plan to get an x-ray, but I sure hope this knee won’t give out on my any time soon!I can’t have dairy, and whey is out of the question. It is a dairy product. What causes my joint swelling is a reaction to the milk protein, and whey is just that–milk protein!
@Bumpy wrote:
…getting back to the leaky gut thing…..
Dixiegirl, I am really interested in your progress on AP, I think you started it about 5 days ago or so. I have scleroderma and like you have gone med free and focused mainly on healing my gut through nutrition (gluten, dairy, soy, caffeine and sugar free) and supplements (D, aloe Vera, probiotics, omega3, resveratol, glutamine and glutathione). I have made major strides in my overall pain and fatigue but have other bothersome symptoms that come with my condition and have been contemplating AP as a longer term ‘solution’. Please post more on your progress with AP and especially on your decision to try it.
Thanks for the posting!I have made major strides as well in my progress with diet, low dose naltrexone, and low dose hydrocortizone (5-10 mg/day). My diet is HUGE. I can hardly walk if I eat oats, but I climbed a 4,000 foot mountain last month! I could hardly believe it actually happened–me climbing a mountain, after where I’ve been! I give all the praise to Jesus Christ!!
I decided to try AP because I still have swelling in multiple joints. It’s not much. I don’t have morning stiffness, like I used to. But nothing else is helping me any more and I can’t just sit and wait for my joints to rot away! I called my doc and he recommended AP to me–I also had done hours of research and was beginning to think that it might help my RA. I’m less scared of mino’s side effects than methotrexate’s side effects! So I started last week.
I have real leaky gut issues, and I get indigestion after every meal now, so i’m kinda concerned. I am hoping that more probiotics will help. Any advice anyone??
I haven’t had my symptoms worsen or improve yet. I’m hoping the herx doesn’t have to happen in everyone for the abx to help them…When do you take the probiotics? How long after the mino? I’ve noticed alot of gas since I started mino last week, so I’m thinking I need to up the probiotics… any suggestions?
I was on a real rocky road when I started LDN. I was flaring up really bad. Because of that, I’m not sure how soon I started feeling so much better. I think it was within two weeks after I started the LDN. I did start with taking 3mg. If you don’t notice much of a symptom change, maybe you need more… If you think it is helping some, then you can ask your doc to increase the prescription, or try taking two pills at once for a few days to see if it helps more. I raised my own prescription from 3 to 4.5 for a week, just to see what would happen, and I have never gone back. My doc is fine prescribing 4.5mg for me (the maximum dose that can help RA). So maybe that would help too…
Hope the LDN helps you soon!I think it should…I have leaky gut and allergies. I changed my diet and it cut out 90% of my RA symptoms.
I was afraid to start the AP because of the leaky gut connection, but I started (after 1 1/2 years of debate) yesterday! So… probiotics will be my best friend and I hope nothing bad happens…
All I can say it that diet can violently affect my RA, and I’ve met several other people who have made the same connection. Hope diet change helps you– try gluten and dairy first. Stay 100% off of it, and if you feel better, try testing yourself for other allergens. Good luck!
