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Hi, I’m very thankful to have found this forum. I was just diagnosed with RA and am still in shock. I thought I had osteoarthritis in a single finger but it progressed to all fingers and now my feet. The rheumetologist I saw came highly recommended, however, she only wants to prescribe meds which I know can be necessary but she doesn’t seem to think there’s a connection with anything I’ve brought to her attention. Before my joint pain began, I was sick for a month with various gastrointestinal issues that I chalked up to something I picked up from eating out. It was pretty severe but eventually went away. Weeks later, joint pain. A few months later, an RA diagnosis. I also am in menopause that abruptly started this year. My question is this – if you test negative for mycoplasma, does that essentially mean the antibiotic therapy is unnecessary?
My blood work for ANA, CRP and Sed rate was all negative/normal. My RH factor was 99. I am confused about which route to take at 51, I don’t want to waste years.
Thank you for all the information. I will update progress for those that may be interested. I am making an appointment with a recommended doctor I’ve found here tomorrow. All the best to everyone.
Thank you for posting. It sounds like our stories are very similar. I had gastrointestinal troubles first too. All my blood work historically is pretty normal just like you. I only have the RA factor. It was 71 in the beginning and I have gotten down to as low as 25 with minocycline, LDN, and consistent diet change. All of my joint and muscle pain has gone now. My fatigue is much much better…everything is better. It is not uncommon for rheumatologists to stick with the status quo. It is simply an easier and more secure path for them to take. I am excited for your upcoming appointment. Let us know how it goes. I am very glad I made the decision to try AP. The other medications are there if you need them, but I think your intuition is telling you to try this first. To answer your question, there may be mycoplasma that we don’t have a proper test for. It is great if you can find a mycoplasma to treat, but it is far from necessary. You are on the right track.
Flare fall of 2014...muscle aches, joint pains, fatigue, hair loss, rashes, etc.
RA Factor 71 in Jan 2015 down to 25 as of September 2017
DR4/DQ8 HLA...biotoxin illness
IGG food allergy to wheat, egg, and dairy...probably all grains
Vit. C&D, probiotics, milk thistle, turmeric, fish oil, methyl b 12, methyl folate, digestive enzymes, Candisol, Ubiquinol, berberine, chlorella, Moducare, LDN, monolaurin, Triphala, Patriot Greens, Paractin
MTHFR compound heterozygous
Igenex IGM positive Lyme, minoMWFHi Ann
It is an awful shock when you get diagnosed or realise what you might have. My symptoms spread in a similar way to yours started in June this year. It started in one finger, spread to both hands, wrists, elbows and left ankle.
I haven’t got an official diagnosis yet because all my blood are negative/normal with no swelling, however, one doctor thinks I may have reactive arthritis after a UTI.
The way I dealt with the shock and living nightmare that I found myself in was to take long walks and listen to the entire Harry Potter series of audio books! That took me to a different world, which is what I needed at the time. When I had terrible, dark thoughts I reminded myself to live in the now. In the future who knows what may happen, I may get run over by a bus tomorrow and then all this terrible worry and stress would be meaningless. I reminded myself to be grateful to still be alive.
Let us know how you get on with your appointment. There is real hope with the antibiotic therapy. Good luck!
Maddie
No official diagnosis yet but probably some type sero-negative, symmetrical inflammatory arthritis.
Started AP treatment December 2018. 200mg Minocin MR Mon/Wed/Fri.Hi Anne;
I really can’t talk much about RA as I have Scleroderma.The one thing I really know is that 10,15,20 years down the road I have many friends with RA and NOT ONE is doing better with the usual meds.In fact many are in wheelchairs.Many were really doing better on meds in the first few years but in the long run they are in really bad shape
I have been on AP for 19 year and doing great except for a few aches and pains now and then but they just might be from getting old.Yes, you are in the right place. All of us here understand your feelings. It is difficult going from normal to a possible chronic disease diagnosis in what seems like a day’s time. It is also hard to articulate your feelings to the friends and family you wish to share with. Many cannot possibly understand how scary it is, because they haven’t been there. I remember when I first learned of my RA factor and was not feeling well, I thought my best days were over. I thought that all I was going to try to do was maintain where I was and not get worse. It was a despairing time in my life. Unless you have been there you cannot know those feelings. We understand. We have all been there. Guess what? Almost five years in I am doing really well. No consistent aches and pains, no major hair loss, much more energy, no left arm weakness or loss of dexterity as before, less rashes and hives. Have you also looked into your food intolerances? Giving up gluten, egg, and dairy have been a huge part of my success puzzle along with AP and LDN. Some people here say diet change did not affect their progress, but it is a definite area to pursue just to see. It can take up to three sometimes five years to totally detox from gluten. So don’t give it up for three weeks and say it did not make a difference. I would give it much longer than that if it were me. Yes, please let us know how your appointment goes. I am hoping you won’t have to wait long. We are here for you!
Flare fall of 2014...muscle aches, joint pains, fatigue, hair loss, rashes, etc.
RA Factor 71 in Jan 2015 down to 25 as of September 2017
DR4/DQ8 HLA...biotoxin illness
IGG food allergy to wheat, egg, and dairy...probably all grains
Vit. C&D, probiotics, milk thistle, turmeric, fish oil, methyl b 12, methyl folate, digestive enzymes, Candisol, Ubiquinol, berberine, chlorella, Moducare, LDN, monolaurin, Triphala, Patriot Greens, Paractin
MTHFR compound heterozygous
Igenex IGM positive Lyme, minoMWFNo one has ever tested my for mycoplasma or lyme and I’ve gone into remission twice with AP. Your mileage may vary…but it worked for me. I hope this helps.
Minocycline 100mg every other day with food...lots of food: Zydus brand. Celecoxib 200mg twice per day: Greenstone brand.
Similar story. Mine started with what seemed to be food poisoning. A few months later I was hiking and I thought my shoes were bothering me because I was having trouble walking. A few months after that I noticed I couldn’t get up from being on my knees without a struggle. Then I had surgery for something unrelated and POW within 4 days I was in excruciating pain and downhill from there. It took six months to get a diagnosis of sero negative polyarthritis. I read that RA can test negative for 18 months to 2 years. I also went into menopause during this period. By year 3 of i was diagnosed with sero positive RA. At first I went the biological route with success but that only lasted 3 years. I really struggled for several years until I found this forum. I started AP in 2009 and by 2010 I was in remission. Stayed there for 4 years until I lost access to brand Minocin and had to go on a hunt for a generic that worked for me. It’s been a lot of ups and downs the last 4 years because of that. I have never been tested for mycoplasma and don’t plan to be. AP works. It’s a long road back once you start taking it but it does work. You’re early in the disease so it should work faster for you. I’d suggest you give it a try and keep posting here. Many of us old timers have been having trouble since we lost access to brand Minocin so you may have to tinker with dose and brand of generic. If you haven’t, read Scammel’s book which contains Dr. Brown’s book The Road Back. It’s an eye opener.
Welcome and good luck.
Cindy
I have the book on order and can’t wait for it to arrive. I’m on a low inflammation diet but my pain is worsening and it’s scary. This is giving me some hope for sure. The plaquenol I’m taking doesn’t start working for up to two months and I did not want to take mexotrexate. I made an appointment today with a recommended doctor from this site for about two weeks from now so I’m counting the days. I will post more as things progress, thanks again everyone.
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