Antibiotic Therapy
I’ve been doing some research into the treatments for Rheumatoid Arthritis, and the options are mostly crummy. Even the more innocuous drugs seem to have long term use risks, which don’t thrill me. I’ve been on sulfasalazine for several months now (I think I started in October), and I’ve not seen any good results yet. It takes time. So I looked around some more, and found a somewhat old school yet unconventional treatment, which is long term tetracycline use. You take a low and slow approach, taking 100mg of a specific tetracycline 3 days a week. Like other RA treatments, results come about slowly slowly slowly, often 6 months or more, sometimes a year or two. When I looked at the roadback website set up for followers of this protocol, I saw a ‘current protocol’ and an ‘historic protocol’. Current says take 200mg daily, historic is the more intermittent dosage. So I took this information to my doctor, and said I’d like to try it. She doesn’t have a lot of faith in the treatment, doesn’t think it will likely work, but she is willing to let me try it, and wrote me the prescription that I wanted. She prescribed it for 200mg daily, which I took for a week. I felt like crap. Somewhat sore, but really nauseous and sick to my stomach. So I looked a little more closely, found the intermittent dosage, and decided to try for that instead of the amount prescribed.
No difference is pain as of yet, but the feeling like absolute crap is gone since cutting back on my dosage. I’m glad for that. I gave myself a treat this weekend, and took some prednisone Friday and Saturday, which really is wonderful and takes away so much pain, and gives me a reasonable amount of energy. I cleaned up the back yard. I did some other chores. I felt like myself. I love that stuff. I do wish that I could stay on it, but I cannot. It’s too dangerous. So I took a smaller dosage yesterday, and a smaller still dosage today (you’re supposed to taper off, not just go cold turkey).
So now it’s back to no prednisone, giving the antibiotics a chance to work. Apparently tetracycline does not give you issues that some other antibiotics give…no resistance to antibiotics, no yeast issues. I am taking a probiotic to help my gut.
A lot of the people on the website say they get marked relief from going gluten, sugar, and dairy free. I tried those, and saw no difference. I had some blood work done awhile ago to look for food intolerance. I’ll wait to hear what the test results say before I decide whether to give these another try or not. I’m happy to eat more healthfully, but am not eager to eliminate entire food groups, so hopefully that won’t become necessary. I do see that for many people, they only need to restrict these food groups when in a flare, and most of the time it is not necessary. So that’s another consideration. A lot of people on the road back website discuss lyme disease, leaky gut syndrome, and so on. I don’t have any symptoms of lyme nor leaky gut, except for my RA.
I’ve tried several things to help. Acupuncture is known to give some relief, but didn’t help me. Vinegar and honey helps some people, but I haven’t noticed relief. Diet changes have made no difference. Yoga helps some, at least to relief stiffness. It doesn’t do a lot for pain. Swimming helps with energy and stiffness, but again, not much of a pain reliever. I’ve gotten into hot tubs twice, once with immediate relief, another time not so much. I even resorted to taking a bath (with epsom salts), but I hate baths so much, it just made me tense, which is the opposite of what it’s supposed to do. I’m taking turmeric, fish oil, and vitamin D. I’m thinking I should try some kind of meditation, but I haven’t gotten there yet. I have had a couple of massages, which generally feel good, but don’t help my joints. I am hoping that the antibiotic treatment works, that I can get off of the sulfasalazine, and get my groove back.
I’ll tell you, this whole thing has been an education for me. Not necessarily one that I wanted. I feel sort of like I’m bouncing back and forth between snake oil salesmen and big pharma. I don’t ally myself strongly either way. I’m all for figuring out the least harmful way to help yourself, and trying to go from there. Wish me luck.
7 Comments
Nance
I’m truly sorry, J. As someone who has lived with chronic pain in the past, and as someone who is a migraineur, I can sympathize with your quest for wellness. It’s something you are driven to do, and it is deeply, intensely personal. On the one hand, you become weary of the bombardment of therapies from very well-meaning friends, but on the other, you are eager to hear of and try them, hoping one of them will be The One.
In the meantime, you are happy for any respite, and you glory in the Good Days. I wish you more of those than the rest. I guess the best thing I can tell you is to find a really great doctor that you love. It’s a long journey that you’re on, and you have to be comfortable with your specialist while you’re on it.
J
Thanks Nance, as always, for the encouragement. I was overwhelmed earlier by the suggestions and remedies, but now I’ve gotten more settled and have sorted through some, and it’s better. I feel like I’m on the path I need to be on for recovery. I hope that’s true.
I do like my doctor quite a bit, so that’s a good thing. She may not be fully onboard with this treatment and believing it will work, but she’s happy to let me try it, which is enough. When I look for doctors that specialize in this treatment, there aren’t any nearby, and the ones within an hour and a half from here would be out of network, so more expensive. If it gets to that point, OK, but for now, I’m happy to stay with my doctor. I feel like she cares and she listens, which are good things. 🙂
Ally Bean
I wish you luck. I get what you’re saying about too many people with too many contradictory approaches to treatment. I have vision problems and everywhere I turn there’s a different way to solve my problem. As if.
Like you I’ve learned more than I ever wanted to know about a medical condition that I really don’t want to know about. But stupid stuff happens, I guess.
Hang in there and keep us updated. I think nance’s comment above is astute. If you like your specialist, you’ll get better– if only in the sense of feeling understood.
J
Thanks Ally! Yeah, I do feel understood with my doctor, so that’s a very good thing. I like that she’s open to this treatment, even if it’s not one that is taught in medical schools. I like that she remembers my situation from one visit to the next, and that she gets back to me quickly when I have questions.
I do wish I didn’t have this journey to travel at all, but since I do, I’ll make the best of it.
Rain Trueax
It’s a tough one. I don’t know enough about prednisone to know what the risks are– other than gaining weight. I know antibiotics are bad for making them less effective. So much we don’t know. Gluten takes six months to know if it’s an answer which makes it tough. Have you tried acupuncture? Some get good results from it and at least it can’t do any harm. I only used it once before I was scheduled for a hysterectomy and then it was to increase my healing. That all went well but was it the acupuncture? That’s the trouble with the body– lots of questions and few answers. Maybe they will come up with one and hopefully sooner than later for problems like yours as well as diabetes and cancer. VICE is scheduling a show that will talk about cancer treatments that use viruses to inject into the tumor and cause it to be destroyed. The body is just a huge mystery. But good luck with yours.
J
Hi Rain,
The long term side effects of prednisone include: Osteoperosis, cataracts, diabetes, a lump on the back of your neck, lots of weight gain, and I’m not sure what else. I already have Osteoperosis in my family, as well as diabetes, so I’m not eager to risk those. Short term use is generally safe, so I can use it when things get bad if I need to.
I did try acupuncture, but it didn’t help. My insurance doesn’t cover it, so I paid about $600 or so before giving up on that one. It is indeed such a mystery, and I’m amazed at the number of people I know with conditions that are outside of the norm, whose doctors say, “wow, I’ve never seen that before…” It’s crazy. All we can do is try our best and be our own best advocates.
Rain Trueax
Is that long term impact for everyone or certain ones who are vulnerable to it? We have had a cat on it for several years as without it, he doesn’t breathe right but we use it only every three days and only when needed then. So far no symptoms for him, not that it means much for humans. I also know someone who is on a light dose who is in his 70s but haven’t heard if he’s had any consequences. With the articles a person reads, it’s so hard to figure out what will relate to us. As you said, if it’s in your family already, then that concern is more pointed. I wish I had better answers as I also know those with chronic conditions where there is no real answer yet anyway. 🙁