AP Diary

The following diary is to record my experience and progress on an antibiotic protocol in an attempt to manage psoriatic arthritis. I am forewarning you that the following is not pretty.

Day 1 (August 5, 2010)

Began Rifampin at 6 am on empty stomach, took azithromycin at 5:30 pm on empty stomach (beginning of z pack), took Limbrel at 5:30 am and 5:30 pm. Rifampin caused urine to be very dark and orange in color. Lasted for a couple hours. Drank large amounts of water. Extremely fatigued throughout the day. Feet and hands very painful. Pain definitely increased, feel more inflamed, swollen. Azithromycin caused almost instant diarrhea. Continued every 10 minutes or so, then hourly. Continued all through the night. No cramping or pain.

Day 2 (August 6, 2010)

Rifampin- 6 am on empty stomach, azithromycin-5:30 pm on empty stomach, Limbrel at 6 am and 6 pm. Diarrhea continues into the morning. No more by afternoon. Bowel movements normal rest of the day. Urine was dark orangish color again after taking Rifampin. Extremely fatigued again. Pain in hands and feet has increased from yesterday. Very painful. Pain feels different. Feels like something is being attacked and at work in every joint that has ever hurt.

Day 3 (August 7, 2010)

Rifampin – 6 am, azithromycin – 6 pm, Limbrel at 6 am and 6 pm. Urine color not quite as dark orange as previous days and didn’t last as long. Bowel movements all normal. Increased hunger throughout the day. Feet hurt like crazy. Tired out of my mind. Other than fatigue, no noticeable side effects from the med.s.

Day 4 (August 8, 2010)

Rifampin and Limbrel – 6 am. Just after 7 am right now. OMG. So much pain. I am hurting in places I have never hurt before. My feet are crazy painful–particularly my left foot. Left hip flexor hurts badly this morning and is making walking very difficult. Have always had difficulty with right hip flexor and it feels fine. Much later in the day hip flexor warmed up, stiffness in hands and feet lasted over four hours this morning. So stiff I couldn’t push down a button on a spray bottle this morning. Feet have felt swollen and on fire all day–very painful–walking very funny. Knocked down with fatigue. Slept most of the day. Every nerve in my body seemed to tingle with fatigue and I passed out. Have never been so tired. Took azithromycin and Limbrel at 6 pm on empty stomach. Loose BM in morning after taking Rifampin. Normal rest of the day. Good appetite.

Day 5 (August 9, 2010)

Took antibiotics at 6 am and 5:30 pm. Limbrel at 6 am and 6 pm. Really tired today, but not as crazy tired as yesterday. Feet and back are in incredible amount of pain. Who am I kidding, everything is in a lot of pain. They said it could get worse before it gets better. Can’t wait to see how long this is going to last. The back pain is all consuming sometimes. Can’t carry my little guy much-if at all. Really foggy thinking the last few days. Can’t focus and concentrate very well. BM all normal today. Feel hungry all the time.

Day 6 (August 10, 2010)

Took Rifampin and Limbrel at 6:20 am. I CAN’T THINK straight. I forget what I am doing from one moment to the next. I go to the fridge…why am I here? I go to the closet…what do I need here? This is RA, not med. induced. Just enhanced I believe, by the med.s since I think some dying off of bacteria is happening and causing toxic effects. Feet hurt live crazy! Wow. Feel inflamed, on fire on the bottom, tingle even when not on them, walking on rocks feeling is intensified. Right ankle and pain between shoulder blades hurts like crazy. Feel like I need to lay down. Got a great night of sleep last night for first time in weeks.

Day 7 (August 11, 2010)

Took Rifampin at 6:20 am, Limbrel 6:20 am, 7 pm. Loose bm in afternoon, normal rest of the day. Shooting pains in my feet. Incredibly painful. New kind of pain. They are on fire.  Back in a LOT of pain. Two spots on back that radiate pain–right between shoulder blades and base of my spine. Makes sleep difficult and feel pain throughout day from these areas. Got a good night of rest. Extremely fatigued all over throughout day, but pushed through day without getting a nap. Hungrier than usual.

Day 8 (August 12, 2010)

Took Rifampin at 6:20 am (stopped stetting alarm to take med.s a couple days ago and body wakes up right on time anyway) Added herbal liver and kidney support T.A.P.S a few days ago. Extremely thirsty. Ears and throat feel very dry and threaten to ache since starting med.s, so I keep taking in lots and lots of water. Urine was very dark yesterday and this morning. Feet, left pinky and back are hot, very, very painful. Feeling dizzy today. Only felt dizzy day after began med.s, but haven’t since then. Keep getting head rushes when I stand up and see white flashes. I go into deep breathing. Loose bm this morning. Ugh. But no cramping or pain. Couldn’t go back to sleep around 4:30 am this morning, stomach growling was part of problem. Ate a great dinner. Thought about eating something and then trying to get back to sleep.

End of the day. Took azithromycin at 5:30 pm. Pain in my feet has never been so acute in my life. Can you give a girl a break? sigh. Went to orientation with m this evening. walking from parking lot to the cafeteria was extremely painful. No way to fake it and walk normal. My feet continue to get stabbing pains even when I am off of them. Icing them now. No longer dizzy. Just grumpy. So much pain. As long as this is normal. I can deal with it. Staying on top of it with all of my supplements. Discovered on Limbrel’s website that the pill capsules are dyed with blue #1 and green fd&c #3. Elisa test showed sensitivity to fd&c #3 specifically. This evening, I opened up the capsule and put powder into my mouth and tossed the nasty gelatin, artificially colored capsule away. Need to call Limbrel to make sure ok to do this to receive best benefit from it. My feet have never hurt this bad all at once. M having friends over for sleep over. House just might have to be cluttered. I am so tired and in so much pain. Not able to rest during the day when my body cries for it. This is my pity party. pooh.

Day 9 (August 13, 2010)

Didn’t get a chance to write on this day. Writing this a day later. Took med.s on time. Urine was very dark. Seems like every other day it is particularly dark. Finished the Limbrel sample. Going to wait to fill prescription for it due to flavonoids in it and fact that Elisa test showed I had sensitivities to certain foods rich in flavonoids. Also not thrilled about the artificial colored blue gelatin capsules. Still in a great deal of pain.

Day 10 (August 14, 2010)

Took Rifampin at 7 am. Pain in feet is slightly less today. Was able to depress the parking brake pedal in my car without thinking about it. Just about killed me to do it the day before. Still feeling very, very tired. Breasts are finally (as of a few days ago) back to normal. After weening little guy, they were full and VERY painful for week and a half. I was in so much pain and was concerned about getting infection because constantly full and hard despite constantly expressing them.  Felt like that issue was dragging my system down while also dealing with effects from antibiotics.

Day 11 (August 15, 2010)

Did not record on this day. Day later… took med and supplements on time. Stomach not happy in the morning. Crazy amount of pain. Ridiculous amount of pain in feet. Back has been improved since massage therapy appt. but still hurts between shoulder blades and base of spine. Went to AIGA event with B the night before and had to sit in hard metal chair for an hour during a presentation. That was a back killer. Couldn’t sit still due to pain. Was on feet for a while after that and definitely payed for it on this day. Great to get out though.

Day 12 (August 16, 2010)

Rifampin at 7 am, azithromycin at 5:30 pm. I thought few days ago was in worst pain ever, now I’m thinking this is it. Impossible to walk normal. Had to get x-rays taken that my new rheum. ordered before next appt. Went with m today to get that done. X-rayed hands, feet and back. Haven’t had hands x-rayed in over a year, back has never been x-rayed by Dr. Lady at the desk must have noticed my funny walking because she made a comment about not making me sit down and then have to come back up to the desk again. Thank you. Urine was very orange and dark this morning. Tested my ph and it is great. Stomach fine all day, normal bm. Still crazy tired. The fatigue makes life really difficult. So much that I want to do doesn’t get done. I have noticed that my thinking has been more clear. I am acutely aware of this. Noticed it yesterday. J is constant motion. Constant. But the best baby in the world. And where is he hiding all the food he eats? Crazy amount of food. Hands and feel felt very swollen this morn. Feet never warmed up. Constant pain. Ice and heat help only slightly while against my skin. Wondering if dose should be dialed back. Appt. on Monday. Anxious to see blood work results. Will they still be normal? Or will there finally be a blip?

Day 13 (August 17, 2010)

Took rifampin at 6:20 am. Feet hurt like crazy today. Good to work out with A. Tired, but get through the day–barely. Stomach a little sensitive this morn. Didn’t eat until lunch time. Usually able to eat in morning. Really dizzy this evening. Too tired to write any more…

Day 14 (August 18, 2010)

This morning’s pain was awful. Took Rifampin at 6:20 am. Took all supplements on time in morning and evening. Had terrible menstrual cramps. Not usual for me. Lasted into late afternoon. Made me feel very nauseous this morning. Had normal bm in morning and then around 9 am everything went through me. Fine the rest of the day. Still very high level of pain. Sore from working out with A yesterday, but not overly sore. Urine was dark and orange later into the day than usual. Fatigue is still a very overwhelming feeling. Hard to get through day.

Day 15 (August 19, 2010)

Took Rifampin at 6:20 am. Left knee is very painful. Not normally. Loose bm again at 9 am but normal early this morn. Repeat of yesterday. Maybe should take probiotic a little earlier. Feet very painful. Hands felt swollen and stiff this morn. Urine is dark. Throat feels very dry despite large amounts of water consumed. No menstrual cramps this morn. Took azithromycin at 5:30 pm. No noticeable side effects. My left knee hurt with every step today. Kept expecting the odd and sudden pain to disappear, but it never did and was very painful. Could not put pressure on left leg when I walked. What in the world? Toes on left foot very painful. Back definitely improved. Tired all day. So sick of this fatigue. Can barely function.

Day 16 (August 20, 2010)

Geez, the azithromycin must have kicked my butt overnight because I was in crazy pain today. Knee is still hurting. What’s up? Spot between shoulder blades is killer. Left hand stiff and painful all day. Feet, ugh. Tears this morning. Sick of the pain. Loose bm again. Twice this time. More fatigued today than last few days. Dark, dark urine this morn. Headed to IKEA this weekend. No way I can do that store. Wheelchair? Wow. But I refuse to use those oversized riding carts at Target.

Day 20 (August 24, 2010)

Have been taking med.s within half hour either way of schedule. Always on empty stomach except for last night when I had eaten something and then remembered to take Monday antibiotic dose. Stomach and body tolerated med.s better. Hopefully, didn’t diminish benefit too much. Saw Dr. yesterday and he said my two ankles were “day and night”. Couldn’t see ankle bone on right foot. If I even bump it or certain parts of my feet it hurts. Doctor said this approach is aggressive and will have to push on through the pain if want to stick it out, but if after eight weeks there is no improvement, I might want to consider trying a different approach. Don’t feel quite as inflamed as yesterday and definitely less pain, but feet still in tremendous amount of pain. Believe stress of first day of school for my three guys (start of middle school for M) aggravated my situation. I didn’t feel incredibly stressed and didn’t cry much for the first time. So, maybe stress was more internal. It was back to business yesterday though. Pain has been bad and constant last few days. Normal bm everyday though. Urine dark in morn. still. Always feel thirsty, dry mouth despite increased water intake. Doc said eyes are dry. Blood work still normal across the board. Even though I couldn’t see my ankle and toes look like sausages, my CRP is zero. Go figure. I can see my right ankle much better today. Left hand (pinky) is swollen and stiff all day. Warms up a bit, but pain doesn’t diminish much. Working out with A. Told her via text that today was a go but I was still a wreck. Decided to embark on Maker’s Diet again and began it this morning. Think it will be a great compliment to the AP. Felt great last time I did it, but wasn’t able to incorporate the fasting days since was still nursing. Going to work through the diet the hard core way this time. Bye, bye yummy things.

Day 22 (August 26, 2010)

Yesterday was awful. Darkest I have seen my urine. Head was in the worst fog and was extremely tired. Believe it was due to withdrawal from grains and sugar since both were dropped from my diet two days ago. But today–I felt the best I have felt in a long time. I actually went to the small grocery store on my own. Can’t remember last time I’ve done that. And feet weren’t screaming in pain later. Still painful, but more manageable. We’ll see what tomorrow brings. Anxious to see what my morning stiffness will be like. Last time I did this diet, I felt great, but joint pain and inflammation remained the same. Had my chipped filling removed today and replaced. Did extensive research on the link between mercury and disease prior, and safe removal of amalgam fillings.  Was quite nervous going in today. Lots of prayer. When she cut into the filling she said, “Wow, came right out!” Thank you, Jesus, I thought. Called and spoke with dental staff about their removal procedures yesterday. Gave them a copy of the removal protocol Joe directed me to when I went in. Called Joe on air about mercury toxicity and he gave me some great info. Also told me to ramp up my Vitamin C intake to 8-10 grams for two weeks right after my appt. I chipped the filling back in 2007. Got me thinking about the fact that the chip provided an entry for bacteria on constant basis. My joint pain surfaced in 2008. Tooth issue could certainly be adding a drain to my system. Also interesting that my jaw pain is on the same side as the chipped filling. Whether or not it is adding to problem, glad to finally have it taken care of. I never like going to the dentist.

Day 23 (August 27, 2010)

9:45 am. Note to self-phase one of maker’s diet makes me feel good. It’s tough though if I don’t keep food in me because start thinking about eating oatmeal or Ezekial bread or sweet things like chocolate. Eating this way demands a little more prep work. But well worth it. Notice urine is darkest around the 9 o’clock hour. Took azithromycin last night on time, on empty stomach. Thanks to my phone alarm. Loose bm a couple times this morn. Feet look puffy, very, very tender. Specific points of pain on the underside of my feet that don’t go away when I sit. Ouch. Always seems like I am in more pain the morning after I take the azithromycin which hopefully means that it is dealing with something one on one in my joints. Another note to self-Dr. said latest x-rays show bone loss. This is a first. This means it just recently happened because I had x-rays taken by podiatrist just few months prior and they showed no arthritic changes.

Day 24 (August 28, 2010)

My feet are in so much pain. Toe next to big toe on left foot is more swollen than ever before. Beginning to look like the deformed toe on rt. foot. Scared to lose toes on left foot now. Pain in my feet is just plain crazy. Tears. Frustration. Left knee extremely painful this morn. Couldn’t put much pressure on it when walking. Feet hurt so much last night that it made falling asleep difficult. Stabbing pains, tingling, inflamed sensation. Extremely fatigued yesterday.

Day 29 (September 2, 2010)

July 15, 2010

September 2, 2010

Sigh…so, toe on left foot is under attack. Has taken on the sausage appearance of the one on my right foot. The flaring joint pain is one thing. But now the inflammation that is happening is scary. Four weeks into AP and it seems to keep getting worse. Can’t help but cling to hope and doubt the approach. Helps to read testimonials on Road Back site. Many also deal with pain and inflammation at the outset. For some it is only a few weeks, for others they herx off and on for years. Scary. The road back for me is certainly not a scenic drive. More like a back road that requires an all terrain vehicle with some seriously good praise and worship music to help remind me who is driving. Left foot hurts like something crazy at the base of my toes on the underside of my foot which makes walking normal impossible. I HATE using my temp. handicap placard. So self conscious. Had to use it this morning to get boys into gym for school this morning. Left pinky is still my enemy. Pain still runs down my hand to my wrist. Baby just woke…

Day 34 (September 7, 2010)

Hard to believe it’s been about five weeks on AP. Feels like a lot longer. Toe is still puffy and painful. Left foot felt like it was asleep for most of the morning. Kind of scared me. Worked out with A this morning and then after getting baby down for a nap I crashed super hard. Felt like I had run a marathon, even though I had just done strength training. Every nerve felt spent. A said I looked even thinner. She was concerned. Told her it was probably due to dropping grains from my diet. Noticed that eliminating grains has significantly reduced my fatigue. Dropping gluten has not affected my pain or inflammation. It didn’t in the past either. Craving Ezekial bread and pancakes. Began taking type II collagen two days ago. Taking third dose tonight on empty stomach. The Harvard study, among others are quite compelling. Joe has it compounded for me at his pharmacy. Can’t hurt to throw one more trick in the bag and see where it gets me. Have had intense pins and needles cramps in gut in the evening the last two times I took the azithromycin. Couldn’t finish my dinner last night it hurt so much. Not liking that. Going to do metals test. Began taking captomer this morning for the test. Taking three divided doses of two pills on empty stomach. Makes figuring out when to eat a chore since I have to take it three times on empty stomach. Collect urine for 24 hours on the third day and send sample to lab. Joe wanted to do this test a long time ago but I couldn’t since I was breastfeeding. He thought I should wait now that I have embarked on AP. But I feel like I want to hit everything I can so I know that I have at least explored this option. Still have loose bm most mornings around 9 am. Urine still very dark and tinted orange in mornings, but clears up to almost clear by afternoon. Drinking a ton of water still. Getting really tired of all the pills I have to take every day. Somewhere around 30 a day. Gets exhausting when not seeing results. On a positive note-a very positive note-I feel like the RA brain fog has lifted significantly. My thinking is much sharper and much clearer. Was crazy how disconnected I was from my brain before and struggled from one moment to the next trying to recall what I was thinking or doing. Couldn’t focus on a recipe, constantly forgot what I was doing when went to rooms or refrigerator. It was ridiculous. For the most part-that is gone. I have also had an increased desire to clean and organize at times. This is incredible if I really stop and think about it because this desire has been absent for more months than I can recall. I want to work on my jewelry again-haven’t had the desire since baby was born. I am still too tired to do a lot of what I would like to do. But the desire has returned. This is good. If I could just get to my front yard. It has never looked so awful. It’s sad. Discovered from neighbor that someone drove their car into our front yard three nights ago. There are skid marks in the street and plants and shrubs wiped out, tracks in our grass. Next door neighbor and neighbor two doors down awoke when they heard the crash. Car hit a parked car at corner before ending up in our yard. Police showed up and made a report. Guess because our bedroom is in back of house, we slept through the entire thing. I believe God answered the prayers I say with the boys for protection over our home. Our car in the driveway could have been hit, or the house.

Day 41 (September 14, 2010)

Where do the days go? I can’t believe it’s been a week since I last wrote. I’m shocked. I miss being able to write posts for my blog. It has been so neglected. : ( Little guy takes one nap now and it has been averaging only 45 minutes. Most days I can’t help but lay down when he rests. That means zero time left for me to do anything I want–i.e. return e-mails, phone calls, blog, research. My days start at 5:40 am and are spent getting the boys ready for school and to school, caring for little guy–which involves a lot of food prep and clean up and non stop play (which I love : ), picking up the boys from school, helping them study and get homework done (which is overwhelming for me at times) while making dinner for the family. Then it’s time to get them to bed and by then it’s pushing nine o’clock and I’m so ready for bed.

Toe on left foot is still puffy. But, I actually felt a bit of improvement in my feet yesterday. Tried hard not to get hopeful or happy, which is pathetic in and of itself. I hate it when I think I might be experiencing twinges of improvement only to have my hopes severely dashed the following morning. I noticed yesterday that I didn’t have to “baby” my left foot as much when I walked. And then…I took my Monday dose of azithromycin in the evening and woke up several times last night in pain. Woke up this morning feeling inflamed all over and down right depressed. I feel like I don’t get a moment to myself these days and it has started to affect me. I haven’t been in a Bible study since little guy was born and have been in one consistently for years. This too is affecting me. I feel disconnected. And well, today, I felt like this has caused me to somewhat lose touch with myself. I give to my family because I love them with all that I am and then I realize that I haven’t given much to myself and I become someone even I don’t want to be around. I feel disconnected from God more than I have in a while. I am thinking about getting up at 5 am just so I can have some time to myself. I just know that less sleep is going to kill me. I can barely make it through the day as it is. But there is nothing more delicious than a dark and quiet house, a hot cup of coffee and a bit of time with the Lord and His Word in the morning. I miss those days. I was able to do it before baby because I could take a shower once I got the kids to school. Now with little guy, if I don’t get up early to get a shower or epsom bath–it just doesn’t ever happen and then I feel down right yucky all day. Feel so much better when I am somewhat put together for the day even if the only place I am going is carpool. Today was tough emotionally. I know it is also because I get off track and life becomes about me. Note to self–not about you!! On a better note, fantastic progress to note that I am thrilled about. I can do push ups now! Once the inflammation and pain attacked my left hand–which was promptly after the depo medrol injection wore off–I became unable to bear ANY weight on my left hand without crazy pain and I was physically unable to bend my wrist enough to get into push up position. Yesterday I thought, you know, my wrist is feeling pretty good lately, let’s just see what I’m capable of now–and low and behold I dropped and did a few without any trouble. Mind you, my pinky is still kicking my butt and hurts 100% of the time. But hey, I can do push ups now! This is exciting. I showed A this morning when she came to work out with me. She was also thrilled. I was also able to increase my hand weights to what I was using a while back now that my wrist is more cooperative. Both of my ankles have been very painful lately. Left ankle pain is new and was pretty bad this morning. Haven’t felt a bit of pain in the left knee. So strange–this migratory pain. It’s so intense and then just disappears. Stomach held up yesterday after taking azithromycin. Pain between shoulder blades is pretty sharp. Still feeling clear headed. This is wonderful. See my doctor next Monday. Anxious to see my labs. Interested in seeing whether they are different since taking med.s. Time for bed…

Day 50 (September 23, 2010)

Again, can’t believe another week has already passed. Have been taking med.s on time since day one. Urine still dark in morning and was experiencing loose bm on occasion. Usually followed the morning after taking azithromycin. Upped saccharomyces boulardii dose significantly per Joe’s instructions and it seems to have eliminated problem. Took azithromycin this week without cramps or discomfort of any kind. No doubt about it–morning after azith. dose I am in more pain. Labs I saw Monday at follow up appointment are still great across the board. As far as my symptoms–improvements have remained steady. Wrist is great. Hello push-ups! Slight improvement in feet. Less limping. On mornings that don’t follow azith. dose there is practically no morning stiffness in hands. Was reading over beginning AP diary notes and I am blown away by improvements made since beginning AP. Felt definite improvement in my feet at work over this past weekend. No doubt about it. We hit World Market, Container Store and Target and my feet didn’t feel twice their size when we got home. They certainly hurt, but not as bad as they would of in the past if I had even walked one of those stores. I was still able to stand on them and make dinner afterwards. This is a miracle. But yesterday being that it was day after azith., they were on ice and felt inflamed the minute I stepped out of bed. Couldn’t bend the pinky on my left hand all the way yesterday morning. Eventually warmed up. Was very inflamed and painful. Something at work there. Left thumb is also inflamed and painful. Yesterday, my back and neck were kicking my butt. Last few days I have had increased back pain at base of spine that shoots pain down my butt. Also dealing with pain between shoulder blades. Had to sit against ice yesterday. Back feels improved today. Right ankle has remained swollen. If I just bump the inner bone words come out of my mouth that should not be in my vocabulary. At my appointment Monday, AP doctor said that the research shows that improvements start to become apparent in the second and third month. This is good news to me since I have seen signs of progress after six weeks. Have to keep reminding myself that the flares and pain usually mean the med.s are at work. Had to scale back on my fish oil and wobenzyme a little for a few days since I started experiencing stomach cramps and nausea. I was burping and tasting my fish oil. Not a good sign and nasty! Have returned to regular doses as of yesterday. So far so good.

Day 54 (August 27, 2010)

I stepped out of bed three days ago and my feet screamed out in pain. What?! Sigh…two steps forward, three steps back. Last few days have been very difficult. Pain has remained intense in my feet. Doesn’t matter if I am sitting or standing. They hurt! Pain radiates up my calves. They feel on fire and the pain on the underside of both feet is very sharp. Increased pain in my right foot for first time since beginning AP. Was unable to stand for the entire portion of music worship at church. I eventually sat. But pride makes it difficult to do so. I got some looks this morning from parents for parking in handicap spot at school event. Took a NSAID this morn. Haven’t done that since my c-section. Try to avoid them at all costs since antibiotics are hard enough on my gut. Got metals test results back. Have a consult with Joe to talk about next step. I have three times as much lead in my system as the max “normal” number. Also have high level of mercury. Great. Have had trouble with sleep for over a week now. I wake up around 3 am every night and have extreme difficulty going back to sleep. Not normal for me. Left collar bone and neck very sore all week. Makes sleep uncomfortable. Have never had a problem with left side, only right collar bone. When MRI was done on right side, was told there was inflammation and steroid shot was recommended. Didn’t take that route and not a hint of pain now months later. Back is tolerable. Hands feels pretty good. No morning stiffness. Wrist–check. Could the change in weather have anything to do with this? It was significantly colder this morning. Pain started a few days ago though. Thanking God that not everything flares at once. Body parts taking turns. Have noticed for the last three weeks that my dreams are very vivid and easy to recall without effort. I waited to make note of this to see if trend continued and it most definitely has. Not a night passes that I don’t remember my dreams very clearly throughout the day. Usually dream recall is random at best. But I can recall details every night. Sometimes when I get up to use the bathroom in the middle of the night and fall back to sleep, my dreams go back to where they left off. Strange. Could it be rifampin causing this? I have read that it causes brain confusion. But I have felt very clear headed since beginning AP. A bit nervous about taking tonights azithromycin dose since I am already experiencing so much pain in my feet. Can’t help but wonder what in the world is going on with my feet all of the sudden and have to remind myself that God is with me and loves me.

Day 62 (October 5, 2010)

Woohoo! Made it to two months. Doc said that research shows that most improvements begin occurring in months two and three. Bring it! Feeling better than a week ago. Still no morning stiffness. Normal BMs. Probiotics are doing their job. Did exercises with A this morning that involved me putting full pressure on both wrists to work arms. No increased pain in wrist as a result tonight. Did something with weights that really ticked off right collar bone though. Very painful right now. Really hard to carry baby on that side. Told husband the other day that if my hands don’t get any better than they already have, that I can live with way they are now. I can get most jars open now. Forget about it before AP. It still hurts, but at least I can do it now. If I could just get my feet to a better place. Tried wearing tennis shoes with my special inserts the other day. Ouch. Won’t be doing that again. Will be dragging out the Dansko clogs soon now that it is starting to get a wee bit cooler. I did manage to go to small grocery store today with little guy and carry heavy grocery bags and even drag myself to another store later with baby and S to get him pajamas for his special pajama day at school tomorrow. Had to instruct his brothers not to snicker at his new jammies since he was so delighted to try them on when he got home. Didn’t want his bubble burst. He looked so cute. Back is behaving lately. Massage therapy always takes edge off. Nails are getting worse with each passing day. Has separated from nail bed on right hand and shape of nail is curving up. Not liking this situation at all.

Day 84 (October 27, 2010)

BMs continue to be normal. No problems with stomach or appetite. Blood work still great. Everything has felt pretty tolerable with the exception of my feet. Back gives me trouble from time to time, but massage therapy and constant stretching and ice always help. Feet have been a roller coaster. Better on some days and somewhat tolerable with shoes on until evening time, and then other days I wake up and they are just plain angry the minute I step out of bed. Occasionally make sleep uncomfortable. Feet have felt pretty good the last couple days compared to how they usually feel. Began yet another elimination diet to compliment AP yesterday. Also did a C flush yesterday morning. It took 48 grams to get flush results. Wanted to completely clean system out before embarking on the strictest diet I have ever tried. Incredible that I haven’t experienced any headaches as a result of not having morning coffee. No brain fog or grogginess. Boys have been praying like crazy for me.  I thought I would crave my cup of coffee all day, but instead feels empowering to give up that which I looked forward to every morning. Thought I would crave sweet things more as well. Hasn’t happened. Also thought there would be more withdrawal systems. Also hasn’t happened. Of course, this is only day two. I might go crazy in a few days!

Day 97 (November 9, 2010)

Making dinner with my feet on ice

Boy does time fly. So, I’m a good three months into this. I had a realization today in regard to my feet and I also remembered that people who have experienced success with antibiotics say that the changes can be so gradual over time that you almost don’t notice them. I was making dinner tonight and I realized that I haven’t used my stool much to rest on throughout the process in the last couple weeks. And here’s the biggie for me. I haven’t iced my feet in a few weeks. The photo to the left was taken mid October. I would often ice my feet while making dinner because they hurt so badly. I would then ice them again after dinner, or stick them on a heating pad for some temporary relief. My feet still hurt and I still can’t walk completely normal without wincing. But they must be more tolerable if I don’t feel desperate to ice them. It’s so hard to tell sometimes when you get used to them being in pain 24 hours a day. But by golly, I think there is improvement going on. Back was just awful last week though. Better now. Spot between shoulder blades again and lower back at base of spine. Killer. Pinky and thumb on left hand slightly stiff, but tolerable and workable. Energy level is good. Mind clarity is good. Ankle on right foot won’t quit though. Still looks inflamed. Never seems to change. Always puffy and stiff and painful. Making discoveries with diet. Soy and wheat and buckwheat bring on headaches and fatigue so far. Nail on right hand seems to have stopped progressing. Nail on left hand is still busy doing something. Have a red painful bump under the skin on knuckle of left hand. Still having incredibly vivid dreams. It’s like watching a movie every night in my sleep. Urine very dark in mornings due to antibiotics. It’s a crazy orangish color. Kind of scary. BMs all normal, stomach is doing well. Have had a ravenous appetite the last couple days. Crazy hungry all the time. What has always satisfied me barely cuts it. I am taking in a lot of protein and fresh vegetables and fruit. Zero grains lately.

January 20, 2011

Wow. It’s been a while. Where am I now. Feet continue to show progress. Other improvements have held steady. I get around most days without being limited. I worked out with A yesterday for first time in almost two months. Felt awesome! Did squats. I’ve advanced to working out on my feet. Yay! Energy level was great. Wasn’t sure what to expect and after she left, I bounced on rebounder and did a few more sets with weights. Felt slightly sore the next day in a good way. Interesting to look back over diary and read that spot between shoulder blades and base of spine is recurring theme. Starting a week or so after Christmas, same areas began to show pain and increased pain levels that I have NEVER experienced the likes of in my back before. I could barely turn head. Pain was all consuming in neck and top of back. Ice, heat, pain killers, muscle relaxers barely touched it. Saw massage therapist for deep tissue, chiropractor and did a lot of stretching. Slowly began to notice improvement–took weeks. Still battling pain. Had x-rays done (again). Working out Tuesday did not aggravate it. Good to know. Sleep has been difficult for weeks now. Wake up a lot. Never really comfortable. Not sure what the heck is going on there. Doctor does not think related to disease. But I am not so convinced. It is right on the spine and radiates pain. Experienced sudden fatigue and light headedness that was overwhelming and forced me to lie down around the same time my back flared up. Was frustrating. Feel like I am bouncing back now. Bought a juicer few weeks ago. After 3 or 4 days of juicing veggies, I noticed that I felt rather remarkable. I told my son that I felt alive. I make sure to also eat fruits and veggies in their whole form as well. Everyone in family got hit with a bad cold bug a couple weeks ago. Honey nearly lost his voice, boys were coughing and hacking and blowing noses constantly and are still getting over it. Little guy got a slightly runny nose and I got nothing. I kept holding my breath and waiting. But nothing. I chalk it up to eating clean and healthy and a few key supplements. Went to first play group today with little guy. Felt good to crawl out from under the rock it feels I’ve been living under and meet some new mommies.

May 10, 2011

Last day of rifampin was April 29, 2011. Last day of azithromycin was week prior to this. Woke up yesterday feeling like I had fallen down the stairs. Everything all of the sudden aches (muscles, all my tender spots, neck, back–let’s face it–entire body in some way or another). Feels as if body is threatening to go crazy. I’m going to have a little fit if it does. Trying to douse the feeling with clean foods and supplements. Woke up feeling the same this morning. First time in a long time that I woke up feeling beat up two days in a row and just wanted to crawl back into bed both mornings. Makes it easy to slip into dark place in my mind, but focused on staying positive. Focus. Focus. Trying to take it easy while also being productive. The two are not going together well. Gee, I wonder why.

May 28, 2011

I think the the aligning of the worst storm we have had in a long time and “my time of month” caused the train wreck of a body I had when I wrote my last entry. Didn’t get worse, but lasted couple of days. Life is a new roller coaster of pain and function now. I am realizing my new norm more and more. There are moments when I do seriously forget about my neck/back pain and get absorbed in whatever I am doing. Today I am writing because my emotions or hormones–one of the two–or both–are seriously messing with me and it’s starting to bother me. I am aware of the fact that emotionally I don’t feel steady. I am edgy–sometimes very edgy.  And the past couple of days I’ve had random bursts of tears. Keep telling myself to snap out of it. But sometimes we women have to just ride it out. I’m only mid month. Hmmm. Always trying to cover my bases with nourishing and raw foods, key supplements, sunshine, fresh air, etc. Feet are being so good to me. Oh, thank you feet. I looooove you. School is out. Praise the Lord. Boys are all off doing something enjoyable. Husband is asleep on the couch. 🙂 Must be a bubble tea coma. Gotta love that sugar! New house is really coming together (insert nail biting). Packing, packing, sorting, purging, packing…  So surreal sometimes.

December 8, 2011

I finally got after my protocol tab and updated it. My progress made with an antibiotic protocol continues to hold steady in the grand scheme of things. Have learned that weather plays a huge factor in my body’s happiness. When the thermometer or barometer changes–oh, hello! Other players include hormones, food that no one should be consuming, chemicals, preservatives, artificial colors and flavors. (The fake stuff that makes food taste better than it should and body and home care products work like magic. Rats!) Skin and nails are still compromised. Starting a protocol to help with liver cleanse/support and repair any damage to gut to help body with effects antibiotics had. I cover large expanses and fare well on my feet (with the aid of my Naot and Dansko shoes). I am parking at the far end of parking lots again. Thank you, Jesus. I don’t wake up stiff and I am more mobile than I have been in a long time. Trying my best to keep stress levels down and body well nourished. I am not loving this time of year due to weather, but loving this time of year due to all of the pretty lights and colors in His honor! Christmas is coming!

August 29, 2012

I am still pharmaceutical free (over one year and three months since I completed AP). Holler! A miracle no less. I consider each day a gift. I have not had a joint go crazy and blow up on me since completing my antibiotic protocol. Diet allows for very limited wiggle room because I start to hurt and certain joints become inflamed if I get sloppy/lazy. Wheat is my worst enemy. Chiropractic adjustments have proven critical to the overall function of my body–particularly in my neck area. If I go too far past the four week mark, my neck and shoulder blade area becomes painful. But I have been doing well overall and have avoided the recommended surgery and epidural injections. Still dealing with compromised nails and skin. Frustrating. Blood work looks fabulous. X-rays of hands and feet show no further damage. Crazy storms still kick my tail. My heels become almost unbearable to walk on when the storms brew. And then as quickly as the storm disappears, so does my pain. Overall, considering where I’ve been physically in the last five years, very content with how I feel today.

15 thoughts on “AP Diary

  1. Thanks for posting this diary. I’m curious about antibiotic protocol for RA and hearing a personal story is interesting. I heard it takes a long time to know if it works….keep it up and keep us posted.

    • Thanks for the encouragement. It has been a tough past two weeks. I’ve heard it can take a while before seeing improvement too. Have to keep reminding myself of that. Will try my best to maintain the diary and hopefully one day I will have improvements to record.

  2. Dear Daughter,
    Your diary is a great idea. We can get a clearer understanding of where you are at. I know you work very hard looking after your family by sheer will power. How else could you do all that you do, feeling the way you do. God bless you.
    Love, Mom

    • Aaahhh, thanks, mom. Made me cry. Sheer willpower. That’s good. You gotta do what you gotta do and the depth of our resources when we need to carry on is amazing. Love you, daughter

  3. Hi. I’m curious about why you’re taking Azithromycin. My husband has had RA for 14 years, and I recently did a lot of research into antibiotic therapy. He’s trying Minocycline and has been on it for about a month now. It’s hard to say whether or not it’s working on it’s own merits because my husband continues to take other RA medications, including a daily maintenance dose of 10mg prednisone, methotrexate, naproxen, and has also recently received an infusion of Actemra. However, after 1-1/2 years on Rituxin, during which he had cold symptoms every single day (sore throat, runny nose, congestion), we decided to try something new. We’re convinced the Rituxin “caused” the cold symptoms and he decided to try another biologic that acted on different cells in the body.

    Just curious about how your doctor and you decided on Azithromycin.

    Thanks.

    Mary Jo

    • Hi Mary Jo,

      When I began my AP research, minocycline was the most common approach I found. As you may know, it is the approach Dr. Brown discusses in his book, The Road Back. After contacting the Road Back Foundation for a list of doctors that practice AP therapy, I decided for the first time in a long time that I was going to trust the protocol my new doctor would recommend and give it a whirl. I was surprised when he said he likes to prescribe azithromycin with rifampin. I had never heard of either one and was expecting him to prescribe minocycline. However, since he has been practicing for many, many years and his patients sing his praises, and he has had success with these antibiotics when other drugs have failed–I decided to give it a go. He said he likes to use rifampin and azithromycin because they are broader spectrum antibiotics and go after A LOT. He said they are also on opposite ends of the spectrum and compliment each other very well. He said it is definitely a more aggressive approach, and unlike minocycline which works best with a low and slow approach–rifampin works best when you come in guns blazing. I kind of like that! I’m ready to blast whatever is ticking my system off. My doctor did say, however, that after we give this a go for about eight weeks–if we don’t see any relief in my pain, we can consider switching to the minocycline approach.

      I hope and pray that your husband begins to experience some relief. Fourteen years is a terribly long time. He is blessed to have a wife that researches different options. I met a woman in the waiting room at my last appointment. She has been diagnosed with eighteen different things and is on a variety of med.s for everything from lupus and RA to high blood pressure. She is in her thirties. She began the same AP protocol four months ago in addition to the multiple med.s she is on and began to experience relief after six weeks. Hope this helps. : )

      • That’s really interesting about the azithromycin + rifampin. When I read your diary, I cringe at all the pain you’re in. Also, I can’t imagine dealing with three kids on top of it all. I’ve been the main caregiver in our family for the 14 years my husband has been sick–for him and for our two children, who are now in high school. This disease is terrible and takes a terrible toll on those who have it as well as those who love those who have it! My husband finally went to part-time work last fall because he was so sick all of the time; that’s one reason I got involved in his care. I was so tired of him never feeling well; also, I felt his rheumatologist didn’t really understand what a hell our lives were. At any rate, Tom seems a bit better since the Actemra infusion, but he’s still in a log of pain many days. He takes minocycline 2X/day along with his other RA drugs, and we’ll see where this leads us. One thing we do know: If he doesn’t feel much better this year, he won’t be working at all anymore. Thank goodness I have a good job with health care benefits!

        You are in my thoughts and prayers. I know your struggle and my heart goes out to you.

        MJ

  4. Pingback: Antibiotics as a Treatment for RA? « Living with Rheumatoid Arthritis

  5. Was wondering what you have been up to but then I remembered your AP diary. It looks that may be some progress but one thing we all know about RA is that it is unpredictable. Sometimes are treatments work, sometimes they don’t but it is does help us greatly when we explore all of our options. But you are absolutely right about the role that diet plays and you are doing a good job putting all of this together. RA is not about being medicated alone. Management is about all of the changes we are willing to make – diet, exercise, lifestyle, supplements, etc. Hang in there. This flare with your feet will pass.

  6. As for the swelling, have you tried SAM-e? It is a natural supplement that you can find anywhere. In fact, I saw it the other day at Walmart. It is made of Sulfur and helps to relieve pain and inflammation. It also helps to build collagen (collagen which bonds our joints together). It is probably just as effective as most over the counter pain meds.

    • Great to hear from you, Lana! Thank you for the encouragement. I checked on you the other day and read your great post on sex. Bravo! Superbitch has a great one too that is really funny! I read it to my husband and he got a kick out of it.

      You are so right about the unpredictable nature of treatments. And we all know that even if something works for one person, it might not work for another. But I always feel encouraged by the fact that the pioneer of AP, Dr. Brown, successfully treated over 10,000 patients before his death. It is sad to me that simply because there are not double blind studies touting it’s success (which is not an accurate reflection of what AP has done for many since it can take up to a year before some see improvement and double blind studies are completed after only six months) and FDA approval (which is meaningless to me personally since they approve things that cause cancer and are banned in foreign countries, i.e. allura red, http://www.3dchem.com/molecules.asp?ID=402) that many people write off AP treatment. I am also extremely encouraged by the multitude of success stories on the Road Back Foundation, http://www.rbfbb.org/.

      Wrist is still feeling great. I can’t help but do push ups through out the day to check on it. I’m still amazed by this new ability. Another neat thing is that the pinky on my right hand that I could only close half way for the last eight months or more has full range of motion now. This particular pinky is what alarmed my last rheumy and prompted him to urge me to start a biologic ASAP since he said I was experiencing “permanent deformity”. Well, it’s back to normal. I can hardly believe I can touch it to the palm of my hand without any trouble at all. I can’t help but check on this often too. : ) My morning stiffness has also significantly diminished. Still feel improvement in my feet today. More improvement than I have experienced since my feet came under attack. Don’t get me wrong, I am still walking funny. But I’ll take any signs of improvement any day. Of course, I am holding my breath until I feel that any progress made becomes consistent and long lasting. But I haven’t seen progress since symptoms first began two years ago (aside from the two weeks of relief from a depo medrol injection that incidentally made me worse after it wore off). But I have to tell you that simply feeling like I have my brain back is out of this world wonderful. There is nothing better than feeling “with it” again. It got to be noticeable and embarrassing when I was having conversations with people. I would lose my train of thought constantly.

      As far as my diet–I had gluten the other day as an experiment and I wanted to take a nap afterwards, but didn’t experience any increased inflammation or pain that was noticeable. Will continue to keep it out of my diet, or at least to a bare minimum since it is definitely inflammatory. Fortunately, the swelling I’m experiencing is most likely a sign that AP is working since many people experience increased pain and inflammation at the outset of the treatment. This helps me to chug along on this protocol. Many get a LOT worse before they start to see any improvement. Another reason why reading others experiences on the Road Back Foundation really helps me to understand that what is going on points to progress. I have not tried Sam-e. Thanks for mentioning. I take mega doses of MSM which is a sulfur supplement. Once I started taking it my nails became so much stronger and the ridges diminished. The mega doses of fish oil I take are for inflammation, as are the digestive enzymes and anti-inflammatory meal replacement (that is quite yummy). My vitamin C megadoses help with collagen building and I don’t know if you noticed that now I am taking undenatured type II collagen. Here is a great link about it. http://www.medsci.org/v06p0312.htm

      Thanks for checking on me. I think of you often and still wonder with amazement how you keep so many plates spinning. Many blessings to you, Lana!

  7. Looking at your latest entry (Jan. 20) – great news on the exercising and good for you! Know that takes alot to get to feel better and there will be good days and bad days. It is just part of it. Hang in there.

  8. Great to hear from you, Lana. It’s so true. I believe that no matter how much better I feel, there are just always going to be days where things are a bit flared up. It comes and goes still. You are never far from my thoughts and prayers. You are my warrior sister. : )

  9. Just a quick note, as I’m off to work in a minute. I just found your blog and read through parts. I’m wondering about the AP protocol for myself, and will do lots more research.

    I have had RA, undiagnosed, for about 10 years, and finally diagnosed last year – but I know from my journals when the various pain, stiffness, swelling, brain fog, etc. etc. etc. – that was all blamed on “peri-menopause” and “natural aging” actually started.

    In the mean time, some things that are working for me that you might want to consider: (I have diagnosed Celiac Disease – so gluten free is key) are the GAPs diet (or SCD diet or Perfect Health Diet – all are about the same)
    Weekly lymph massage to address the swelling – much better than regular massage. Also, deep tissue massage can damage the lymph system, so be sure your therapist is aware to be extra careful with your lymph system. (and, as in everything, not all lymph therapists are excellent – I’ve tried 5 before I found the absolute best in my town)
    Acupuncture to support the immune system.
    And last, but definitely not least my “five fingers” shoes by vibram – I could not sing their praise loud enough. They have fit snugly and act as a mini massage all day, and keep my toes aligned so they don’t get more crooked.

    Email me if you want to discuss any of the above. I’d love to talk more. I’m 62, work full time, but don’t have children to care for. Don’t know how you young folks do this disease with wee ones to care for. My children are your age, and it breaks my heart to read your blogs and see the pics. You are in my prayers.

    Susan

    • Hi Susan,

      I’m so glad you found my blog. I really appreciate the great info. you shared! If you haven’t checked out the Road Back website in regard to trying out AP, I highly recommend it. It has been a great resource and I’ve corresponded with a great group of people. I would also highly recommend reading The New Arthritis Breakthrough. It’s amazing to read about the work that has been done and the things accomplished with an antibiotic protocol.

      I’m with you on acupuncture (need to update my blog since I’ve had great results with it recently) and lymph massage–how great!–I’m a big believer in stimulating lymph system which is why I mention dry brushing my skin in my protocol. My rebounder is also said to be the best thing you can do for your lymphatic system.

      I’ve done so many elimination diets and tinkered with my diet so many times to discover my triggers and fortunately, gluten is not an issue for me. Even with that being the case, I stick with sprouted breads and like to soak my grains for a day before making pancakes and waffles for the kids.

      Have you visited Cathy at her blog, The Adventures of Catepoo ever? She has RA and some Vibram five fingers shoes as well and wrote about them. I’m so happy to hear that you have found comfy footwear! A tall order for us most of the time! I have found Naots to be my shoe of choice. I also love my Dansko sandals. I just recently discovered Naots this past winter and they are my where have you been my whole life shoes–like walking on little pillows compared to my other shoes!

      Thanks for leaving a comment despite the fact that my blog has laid dormant for many months. 🙂 It’s a pleasure to meet you! I would say that I have experienced success with AP. It was a rough road at first and I haven’t experienced symptoms as long as you, but I have never regretted the decision. My feet feel the best they have felt in years and I haven’t had a joint swell on me in a while. Even if it’s temporary, I am loving every minute of it and thanking God for any and all signs of improvement for the time being. Thank you for your prayers. You will be in mine. It is tough with little ones, but I have an amazing husband that is a huge support. And as I imagine you know, God will get us through any situation. Blessings to you!

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