Home Forums Personal History and Progress Threads The Cynical World of Rheumatoid Arthritis- The Woods Files

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  • #367328
    Woods1977
    Participant

    BAD MICHELLE…

    So I”ve been on here for quite some time bragging about how well my arthritis has been under control.. Well the past few days I’ve been experiencing more stiffness/soreness than I have in quite some time- and I think it’s my fault. About two weeks ago I began being very “naughty” with my overall diet… I was feeling so great from an arthritis standpoint that I figured “Ah, it won’t hurt”…. HA! I’m going to do my best to get back to my gluten free/dairy free lifestyle.

    I’ll keep checking in to keep track of my progress to see how things pan out.

    #367329
    Woods1977
    Participant

    Moonwalking… and I don’t mean like 1980s Michael Jackson!

    Well… so much for kicking RA in the ass- it’s kicking MY ass, and in a terrible way! I was doing so well, then I started really going backwards in June… Now we’re into the end of July and I’m feeling worse than ever! Yesterday I was so ill that I almost contemplated going to the hospital- I was having flu like symptoms, and the back of my neck was severely swollen on the left side. Came home, went right to bed, then woke up in the AM feeling terrible again, but as the morning went on I felt better and better, feeling decent at the moment and actually ate some real food today. Pleae note, my sliding backwards is a pattern; it’s the 2nd time this has happened in 1 year, which has me more convinced than ever that we’re missng a piece of the puzzle in “The Woods Files”…

    Went to check out a new RA doctor that’s 2 hours away from me- the visit didn’t go so well. I’m sure he helps several people, but I felt he wasn’t understanding to the fact that I just can’t take off two straight weeks of work to come in for IV treatments. I wish he would have offered some alternatives, but he didn’t. I guess it wasn’t a total loss though.. He must have felt bad because he offered me a script for LDN and Diflucan. I know enough about LDN to feel comfortable trying it- I”m going to start at 1.5 mg (tonight is my first night). Then I’m going to research Diflucan, as I’m not as familar with it. I hate to just “hap hazzardly” start taking a bunch of stuff. As far as LDN, I’m using this strictly as a “tool” to get me over the hump… Once I get my AP use under control I’ll likely work to lower the LDN… I’ll post later as to whether or not I try the Diflucan.

    I’m also having stomach issues now… Each time after I eat I feel sick to my stomach, it comes and goes. Going to my regular GP tomorrow to make sure everything is okay.

    Aside from that, I’ve had an MRI, MRA and an EEG since my last post. I’m guessing they didn’t find anything, because nobody has contacted me. It’s my understanding that “no news is good news” in the medical community. So… I’m still left with the “funny head feeling”, although it hasn’t been quite as bad in recent months, and the headaches have subsided 100%. Now I’m fighting with my old buddy RA again.. **sigh**. I get so tired of fighting with RA, I really don’t want to be friends with you anymore, don’t you get it? Yes, I’m crazy.. but if I don’t make jokes I’ll have a nervous break down. Still managing to wear my heels into work though, it’s really my knees that are just stiff as hell, but my feet are still hanging in there doing okay.

    In closing, I’m hoping I can find a lady who’s story I found on Rheumatic.org- she suffered from RA for over 4 decades (since early childhood). This woman was so courageous, and I don’t know how she got thorugh everything she went though! Her story was very inspiring to me, and she got well using AP. It made me think to myself “Man up Michelle”… You’ve only had RA for two years, this woman had it her entire life- I don’t know how the hell she did it. I tried reaching out to her via email, but it was an old post so the email was no good. I think I found her on Facebok… I really hope she’ll accept my friend request because I must tell her what a wonderful person she is.

    I did a lot of thinking today- I have two choices. Keep fighting, man up and get this shit figured out, or die, period. Living in extreme pain on a daily basis for the rest of my life is just simply NOT an option- period. I REFUSE to be like the other RA’ers who are on other websites who simply blog about how horrible their life is, and all the nasty side effects of their biologics… I have compassion for these people, I truly do- but I can’t be that person, I won’t be that person. God, the Universe, whatever you believe in, gave me the intuition to know better about going the “standard” route when I was diagnosed with RA… and I still feel the same way I did in September 2011 when I was first diagnosed in regard to the standard line of defense, I won’t give up yet. It sure is scary sometimes though, isn’t it? I think the worst is when you have a new symptom that pops up that you never had before… Or when you’re doing something fun, and all of a sudden your thumb starts to hurt out of no where, and you just “know” it’s the start of a flare.. 🙁

    RECAP
    Starting LDN tonight (1.5 mg)
    Working REALLY hard to eliminate dairy from my life (I’ve been drinking tea in the AM the last few days)
    Working REALLY hard to eliminate the last traces of gluten from my life
    Reach out to Dr. S in Iowa (yes, THE Dr. S)… Gave him a quick run down of the past year, and asked what he would recommend if I were his patient – received a note two hours later saying he would get back with me sometime next week.
    Regroup and have a ‘heart to heart’ with my current AP doctor- something is missing.

    #367330
    Woods1977
    Participant

    My experience with LDN
    Thursday, July 25

    I decided to bite the bullet and try LDN on Thursday night; I’m already experiencing some interesting results.

    On Thursday night I took 1.5 mg as instructed. Within 45 minutes the severe stiffness in my hands improved significantly, probably by 80%. The result was comparable to taking an OTC anti-inflammatory such as Aleve, although I didn’t notice much improvement anywhere else. Unfortunately, my hands were stiff/sore once again in the AM.. I experienced the same occurrences with my hands on Friday, Saturday and Sunday nights following my evening dosage. My first increase in dosage takes place on day 8, which in this case will be this upcoming Friday. I honestly don’t want to get over excited (I’m beginning to lose all hope that there’s anything that will help my RA), but regardless, I’m interested to see if I get any further relief. Another note- there’s absolutely no way I could take this during the day, it makes me extremely tired. More information forthcoming!

    #367331
    Woods1977
    Participant

    HELL TO THE NO… NO MORE MINO!
    Tuesday, July 30th.

    I’ve got some really screwy stuff going on (for lack of a better term). Once again within the last week, I’ve felt seriously ill following my dose of Minocin. At first I thought I was just getting sick, but I’m pretty convinced that it’s from the Minocin because I’ve come down with what feels like the flu for the 2nd time following my regularly scheduled dose. I just don’t understand it- I had absolutely no problems taking Mino in the beginning, and now it’s like I can no longer tolerate it, perhaps I’m herxing, or, maybe it’s brought another “underlying” infection to the surface… Who the hell knows. I called my AP doctor today and told him of my experience-he doesn’t want me to quit the Mino cold turkey, and has asked that I back down to 50 mg 1x weekly, and schedule an appointment in his office as soon as possible. I took my weekly dose yesterday (Monday), so I won’t be taking another dose until next Monday (which I’m now dreading). Regardless, I’m going to DEMAND my AP doctor to remove me from Mino PROMPTLY… and try changing me to Doxy or something else. I’ve also noticed that my neck is swollen and my throat hurts as well… Not sure if I”m fighting off some kind of infection or what, but regardless, I can’t keep going this route.

    Still using the LDN… I’m really hoping I’m a good responder! It will be a great tool to “get me over the hump” while I get this crap with the Minocin figured out. By the way, I should add the “flu type symptoms” I’m experiencing occurred BEFORE I added LDN to my bag of tricks- so I’m 100% confident that LDN is not the culprit.

    #367332
    Woods1977
    Participant

    Wednesday, July 31

    Monday, July 29 was my last dose of Mino. Feeling better in relation to the “flu” type symptoms I experienced, however I’m still not 100%. Regardless, I’m not bedridden as the last two times I took the Mino, which is definitely a bonus. I swear I thought I was dying.

    My knees have been giving me fits- and in addition to the stiffness and soreness it’s terribly embarrassing! Yesterday I was in a parking lot with two older women in their 70s… They could walk better and faster than I could! Then my boss stopped me to ask me if I was okay because I could barely walk.. Nice. 35 years old and I’m on my way to the “old folks home”. If I don’t get this under control immediately I’m going to be in some serious trouble. As of right now I have very little hope for the future. Very dark period in my life right now. I’m not religious in the slightest, but I am SO very grateful for this website and forum… Everyone “gets it”, and it’s not like the other RA forums where people are evil, mean and hateful. Quite honestly I never hear anything positive on those forums, from which I have removed myself because they were bringing me down even more. Still want to go on conventional treatments? Thanks, but no thanks. I absolutely CANNOT imagine living my life in a wheelchair! If I ever get to a point where I can’t wipe my own ass (I’m sorry for the crude comment) I have no desire to live- period. I refuse to live that way, it’s simply not an option for me. I absolutely must get this figured out.

    Let’s talk LDN… I’ve been eating anti-inflammatories like candy the last few days; I could be wrong, but I think it’s possibly interfering with the LDN. I just don’t feel the same effects of the LDN that I do when I’m not taking any anti-inflammatories. Since I’m feeling slightly better today, I’m going to do everything in my power not to take any Aleve before bed tonight, and just take the LDN. Tonight is my first night of a higher dose, so we’ll see how it goes.

    Other updates… Knees were slightly better this morning when I woke up, although I took some Aleve before bed so I’m not sure if it’s the Aleve or if my flare is starting to cool down. I took what I hope will be my last dose of Aleve for a few days… I’ve been taking too much lately, so I’d like to begin weaning myself off and hopefully just continue with the LDN.

    GAME PLAN
     NO MORE MINO (demanding to go on Doxy)… Doing wash out until I see AP doctor sometime within the next 2 weeks
     Wean myself off Aleve (been taking way too much lately
     Increase LDN dosage tonight
     Get tested for DILE
     Get tested for additional toxins (i.e. heavy metals)
     Wait for appointment to come with infectious disease doctor in October

    #367333
    Woods1977
    Participant

    The Infamous Dr. S

    Ever since I joined the Road Back (and read the book), I’ve been hearing about “Dr. S in Iowa”. Much to my delight, the kind Dr. S is actually accessable via email! I wrote to him last Friday providing a high level overview of my situation to get his take… He thinks that I’m clearly a responder to AP and it’s working, but he said it’s working too well…. He has advised me to pull back on my dose of Minocin- he did not seem to think I need to go on Doxy, even when I told him about my flu like symptoms. Additionally, he did not seem to feel that any co-infections were involved.

    I defintely appreciate the feedback from Dr. S; how kind of him to respond to emails. Regardless, I’m still going to perform “due dilligence” from a patient perspective and get tested for co-infections and DILE. I think I’m a bit afraid right now becasue I”m feeling so horrible… I think additional testing will hopefull set my mind at ease.

    As for LDN, I think it’s working a bit, but I really can’t tell 100% yet. I’m still feeling really crappy so it’s difficult to gage right now.

    So long for now…

    #367334
    Woods1977
    Participant

    ***UPDATE***Had my appointment today with the AP doctor

    ***UPDATE***Had my appointment today with the AP doctor… received some very surprising news!

    Rheumatoid Factor: Dropped 22 points since previous test
    CCP Antibody IGG: Dropped 0.95 points since last test
    ESR/Sed Rate: Up 20 points from my last test (I’m not surprised given the way I’m feeling)

    Although my sed rate isn’t where I need it to be, the improvement in my Rheumatoid Factor and CCP is EXTREMELY important… This is the first time since I began AP therapy that I’ve had any improvement in my RA Factor or CCP. Even when I was feeling well, those markers continued to go up- not down. This is definitely good news, despite the fact that I feel like death. While the labs are encouraging (even the “Road Back” book discussed that there are times when labs will improve before the patient), my doctor was more concerned about how I’m feeling- not just the labs.

    Minocin or no Minocin… that is the question.

    Given all the crying and whining I’ve been doing the last few weeks, you’ll be very surprised to hear that I’m giving Minocin one last chance. I had a detailed conversation with my doctor about this- he’s not quite ready to change to Doxy just yet; he was extremely pleased with my labs with exception of my Sed Rate of course. He wants to try backing me down to 10 mg/wk of Minocin to see if I can tolerate it before we give up, and he’s going to set me up with a compounding pharmacist so that I don’t have to try and figure it out myself. Given the improvements in my labs I’m willing to try Minocin again at 10 mg/wk to see how it goes. He also explained to me the importance of using anti-inflammatories right now (I know this, but I hate taking them)… but I’m going to use them as a “tool”, then once I’m feeling better I’ll begin to taper off of them.

    My thoughts are all over the place right now… I’m really hoping these recent labs are an indicator of something good to come, although I’m going to be cautiously optimistic.

    #367335
    Woods1977
    Participant

    As I sit her typing on my home computer, the hot tears are steaming down my face. I essentially feel like death- I’m just wiped out. Furthermore, my hands are finally begining to show the ugly signs of RA- I’m starting to see get some ugly bumps on my fingers, and on really bad days I can barely get my wedding ring on and off. I really need to get this under control… Although I feel like I’ve been dealing with it for so long, I don’t get freaked out the way I used to about new symptoms. That”s pretty sad isn’t it?

    From previous posts you’ll know that I can no longer tollerate Minocin- although my doctor was persistant that I continue taking it, at a decreased dose of 10 mg/week. I really wasn’t on board with this, but I felt like I didn’t have a choice in the matter either. I’m not much of a Maverick when it comes to ordering drugs from overseas… I feel like my AP doctor is my only hope.

    Call it the luck of the Irish… or call it anything you want, but three compounding pharmacies later, my AP doctor gave up on Minocycline and changed the script to Doxycycline, so I guess I won by default! Each compounding pharmacy he called either didn’t carry the Watson brand, or they just didn’t compound Minocin period. However, they DO compound Doxy… and I should be able to get my script tomorrow- a bottle of 60 capsules, 10 mg each, which is nice because I’ll have a great deal of control over how much I take and how I want to ramp up.

    Although I’m grateful, I’m starting to feel extremely defeated. What if I’m one of those people who AP doesn’t work for? I can’t imagine living my life taking biologics… I’m going thorugh an extremely dark time right now. Once again, I feel like I’m facing a problem I can’t fix, and although I’ve never comtemplated suicide, for the first time in my life I’ve thought about what I would do if I can’t get this under control? I CANNOT LIVE LIKE THIS… I WON’T LIVE LIKE THIS! I’m tired of going to work and sleeping in the bathroom stall because I”m too exhausted to keep my eyes open. I’m so disgusted that I have to ask my husband to open almost can/bottle in the house because my hands are so stiff and sore. I’m going to be 36 years old next week and I’m moving around like a 90 year old in a nursing home. OH, and the best part- I’m back to throwing myself on and off the toilet again, ain’t that some shit? The worst was last weekend when my husband and I were on our boat. I love floating in the water on my inner tube… Although it wasn’t a good idea last week, due to the fact that I was so stiff/sore I almost couldn’t pull myself out of the water- it was extremely embarrassing. I DO NOT WANT TO BE THAT PERSON THAT EVERYONE TALKS ABOUT AND FEELS SORRY FOR! If I ever get to a point where I can’t wipe my own ass (forgive my crudeness), I don’t want to live- end of story. I just feel so hopless- and the only thing that remotely keeps me going is this website… I’ve read all your hopes, dreams and defeats- truly, a wonderful group of people who really do understand.

    I was thinking a lot today- thinking about how you know you’re seriously ill when your indulgences are no longer pleasureable. If that alone doesn’t motivate you to get well, nothing will. Jesus, I really don’t want to turn into “that person”, who does nothing but talk about their illness. I woud give anything to be well again.

    #367336
    Woods1977
    Participant

    The Summer Wind

    It’s been unseasonably cool recently, but the lovely Michigan summer has returned! The sunshine and waters of Lake Erie this past weekend greatly improved my mood. I hate like hell to think that Fall is just around the corner.

    Still using LDN nightly- 4.5 mg. At first I thought it was helping but now I’m not sure. I’m really not seeing any kind of dramatic difference in terms of stiffness/soreness, but it’s certainly not exacerbating my symptoms either, so I’ll continue using it for the time being.

    I picked up my script for Doxycycline from the compounding pharmacy yesterday and took my first dose yesterday (10 mg). I can’t stress enough how sensitive I am to Minocycline at this point, so I’m being extremely cautious during my initial ramp up period. My current plan is to begin with 50 mg/week (10/20/20 M-W-F). If within the next three weeks I find I can tolerate 50 mg/weekly, I’ll slowly ramp up an additional 10 mg (20/20/20 M-W-F), and see how that goes, then adjust accordingly.

    Ironically, I woke up in the middle of the night last night with some shooting pains going through my hands and wrists. Given my past experience with Minocin, I’ve been able to associate shooting pains with the overall “die off” response, although it’s highly unlikely that 10 mg of Doxy could cause such a reaction so soon. Regardless, I found that my hands felt different this morning when I woke up- still stiff, but not as stiff/sore as they have been. I’m not getting too excited, again, I realize that 10 mg of Doxy isn’t going to cure me, and it could very well be a placebo effect at this point. Regardless, I’m feeling decent today in terms of stiffness/soreness so I’ll take it!

    Brain fog has been slightly better lately… Not sure if it has to do with discontinuation of Mino, addition of LDN or detoxing, but regardless, I’ll take it!

    That’s all for now…

    #367337
    Woods1977
    Participant

    It’s my party and I’ll cry if I want to!
    August 22, 2013

    Today is my birthday- I turned 36 years old today at 2:06 PM. I’m fairly certain I don’t need to tell any of you what I so desperately wish for…

    What is it like to have Rheumatoid Arthritis? For me it’s like having a dark cloud always looming over me. No matter how happy I want to be there’s always something holding me back. The illness alone makes me feel ugly and unattractive. I don’t want to be “that person” that everyone talks about and feels sorry for (I’m doing a good enough job of that myself). Once again I’m wearing flats and kitten heels into the office… lovely. My fingers look like sausages- cute! I just realized today that I’m actually starting to avoid certain things because I know the outcome will be painful… For example, I dread having to get bottled water from the vending machine at work, because I know I’ll have to fight with the lid to screw it off! Something else I hate about this illness is that I have to worry about how I’m going to feel tomorrow morning when I wake up… Even on the weekends when I want to do something fun, I have to worry about whether or not I’ll feel “up to it”. This is NO way for anyone to live. I feel like I don’t know who I am anymore… Where did “Michelle” go? This is not me. I was the girl that never encountered a problem she couldn’t fix… I’ve never felt defeated in my entire life. I’m tired of going to doctors, getting labs… I’m tired of having an upset stomach all the time… and considering my Monday-Friday 5 AM wake up call, I’d kill for a good nights rest. I HATE the person I’m becomming… I do not want to be “that person”, but I feel so powerless… and all I do is complain… and it makes me hate myself even more.

    In terms of my new Doxy schedule, tomorrow will be my last dose for the week. So far I’ve had 10/20, then on Friday I’ll have another 20 mg for a total of 50 mg this week. I’m not feeling well what so ever, but I’m not getting terribly ill from the Doxy either, so at least my system is tollerating it for the time being.

    That’s all for now… Feel well my friends!

    #367338
    Woods1977
    Participant

    Doxy Update

    Friday, August 30

    Today marks week two since I began taking Doxycycline. I’m presently taking 50 mg/wk (10/20/20). I’m already experiencing some nasty flares- and based on my previous experience with Minocin, I’m quite certain the flares I’m experiencing are “die-off” response flares. We all know the drill – there’s no getting around flares completely! That said, I would say I’m tolerating Doxy reasonably well, as it’s certainly not putting me to bed with flu type symptoms like Minocin did. I’m sorry Minocin, you’ll always be my first love, but I need to love you from a distance right now… 

    I woke up Tuesday morning in tremendous pain in my shoulders- I cried all morning long until my beloved Aleve kicked in- it was horrible. The pain was so bad that I seriously didn’t know how I was going to wash my hair in the shower. My goodness, how we take simple tasks for granted! Never again! Ironically, the pain seems to be slowly dissipating away from my shoulders and down my arms. Perhaps the Doxy is working its way around to all the “critters” as my AP doctor likes to call them? Who knows… 

    On a positive note, I woke up today with much less stiffness/soreness in my knees and hands- but I’m having some nasty shooting pains instead. Based on my own personal experience with RA, shooting pains are not a “normal” symptom for me- my main symptoms of RA are stiffness/soreness/swelling. That said, I’m willing to bet that the decrease in stiffness/soreness/swelling associated with the shooting pains are the result of a “die-off” reaction for sure. I strongly believe I’ll have a better idea of how things are going within the next 7-10 days. If I continue to do reasonably well during the next two weeks, I’ll likely ramp up my dose to 20/20/20 M-W-F. Something I’ve learned is that my body is extremely sensitive to this therapy- no sense in rushing things and making myself ill.

    It’s funny… While I’d do anything to have my health and wellness back, I’m actually thankful for this experience in strange way- I feel that it’s made me a better person. Does that make sense? Between watching my Father suffer from Dementia and RA, it’s made me have a lot more empathy for people- empathy I didn’t have “pre-RA”. More importantly, I’m learning about something called HUMALITY….. and boy is that a tough pill to swallow. Asking for help and admitting you can’t perform a simple task is an extremely humbling experience, in case you don’t already know!

    I’m not a religious person by any means… but I feel very strongly that this journey (at least for me) isn’t just about healing my body, but also my mind, spirit and soul. No matter how difficult the road- someone is making sure I’m learning the lessons that were intended for me- and I’m fine with that. While it’s difficult not to have a “pitty party” every day, I can honestly say I don’t feel sorry for myself (at least when I’m in my right mind—RA tends to make us a little crazy and crabby from time to time).

    That’s all for now… I’ll check in sometime next week and recap my progress.

    #367339
    Woods1977
    Participant

    Senseless babble

    #367340
    Woods1977
    Participant

    Saturday, September 7
    Things that make you say “hmmm”….

    I went from not being able to wear my wedding ring yesterday and a left elbow so stuff & sore that I couldn’t hold a phone to my ear, to having a fairly decent day today. This is the 2nd time in 8 days that I’ve had a “decent” day… Don’t get me wrong, I’m not feeling ‘great’, but my pain is tollerable today, and I’m simply elated that I can wear my wedding ring again. I’ve only had 2 Aleve today, so that should tell you something!! It’s been a while since I’ve taken the OTC dosage… (doc wants me on the prescription dose for the time being until I’m feeling better).

    I’ve given up the fight against insomnia from a “natural” perspective, and reached out to my Aunt for some Xanax to help me relax before bed. It’s not the “be all end all” by any means, but I’m slowly getting some much needed rest, so I’m not going to complain. I swear I’m not a drug pusher, neither is she…. haha. She only gave me 10 pills, told me to break them in half, and when they are gone not to ask her for anymore… 😆

    I’ve decided to take a break from LDN… I really don’t think it’s helping my RA. I mostly quit taking it because I’m afraid to take it with the Xanax. If I find I start getting worse (is that possible) I’ll likely resume the LDN at a later date, but for now I’m just not seeing any benefit. Please note, I don’t want to discourage anyone from using LDN, as a number of us “auto-immunies” do really well with it, especially those with MS and Crones. It’s just not for Ms. Woods…

    Anyway, that’s it for now friends… Be well and enjoy the rest of your weekend!

    Woods

    #367341
    Woods1977
    Participant

    Cautiously optimistic

    Today marks week four since I began taking Doxycycline.

    About a week ago I wrote how the next 7-10 days would be crucial in deciding if Doxycycline is “doing its thing”…. and while I’m cautiously optimistic, I think I’m slowly starting to turn the corner. I don’t feel well by any means, but the last three days I’ve noticed that my severe stiffness/soreness in the AM seems to be improving in less time. Additionally, I’m noticing a nice improvement in terms of how my anti-inflammatory medication is working, as my hands, feet, neck and shoulders seem to be responding to it much better than in recent weeks past. There was a point in time where I could hardly make a fist with my right hand, and with exception of my index finger, I’m able to make a fist once again. I also noticed that I didn’t have to struggle as much to wash my hair today…. which was greatly appreciated. Let me tell you, this chic has a head of long, thick hair, therefore washing my hair is quite the chore! Finally, I’m happy to report that I didn’t cry this morning when I got out of bed from being in pain. I’m telling you, the ugly faces/crying caused by RA pain probably aren’t helping my facial features- I don’t need any help with the aging process!! Don’t get me wrong- the flares/herxing have been horrible with Doxy, but way more tolerable in comparison to Minocycline.

    Next topic: Xanax.
    I’ve decided that Xanax is one of the best drugs created for mankind. Yes, I sound like a junkie (don’t judge) but my month long insomnia cycle is finally coming to an end. I’ve slept fairly well the last three nights and today was the first time in weeks that I haven’t felt like death at my 5 AM wakeup call. Starting this evening I’m going to begin weaning myself off of the Xanax, as this drug is highly addictive. My intent was to use it strictly as a tool to break my insomnia cycle, nothing else.

    Now… Let’s talk LDN. I haven’t taken LND since last Thursday night- primarily because I was too chicken to mix it with Xanax. I’ve made a solid decision to cut the LDN from my protocol for now as I’m just not seeing any benefit from an RA perspective. I want to stress that my personal decision to refrain from LDN should NOT discourage fellow RA’ers… as it’s truly a miracle drug for some of us “auto-immunies”; it’s just not MY miracle drug. Regardless, I wouldn’t hesitate recommending it to anyone else as it’s non-toxic with very few side effects.

    I have a follow up appointment with my AP doctor this Thursday. I looking forward to getting my RH factor and Anti-CCP re-tested to see if my #’s are still dropping, or at least maintaining. Finally, my big appointment with the Infectious Disease doctor is on the 24th of this month- that should be interesting!

    That’s all for now… Have a good week everyone! Friday is just 4 days away, but who’s counting?

    #367342
    Woods1977
    Participant

    Just my imagination??

    I want to be really careful with the phrase “cautiously optimistic”, but some positive things are going on.

    While I’m nowhere near being out of the woods, my depression is slowly lifting and my witty banter & charm is returning, much to my husband’s dismay. He always tells me quote “As long as you think you’re funny that’s all that matters”. In my opinion HE’s the one with the problem- he doesn’t know good humor!

    Additionally, I’ve noticed a huge improvement in relation to my brain fog and concentration. My typing skills are about 75% back to normal (typing is an important gage for me, as I’m an excellent typist by nature), and I’m not having as many brain farts as I was a month ago. Finally, while I’ve been extremely achy lately (more achy than usual), my joints have been more functional the last few days if that makes any sense. However, my knees are unrelenting in terms of stiffness majority of the time. Don’t judge, but I swear I’ve contemplated teaching myself how to stand over the toilet seat, pee in a solo cup and call it good. However, being a woman I would guess that my aim won’t be so great- that’s going to be yet another “maneuver” I’ll need to teach myself. Ladies, if I come up with anything good I’ll be sure to post an update. I’m not kidding- my toilet drills are going to be the DEATH of me- literally. I can’t stand the horrible cracking sounds my knees make- it’s like nails on a chalk board.

    Sleeping is up and down… I was taking some Xanax which helped a great deal. I did this for about 7 days, then slowly took myself off, and introduced Melatonin drops. Definitely not as effective as Xanax for sure, and the last two nights I’ve slept like crap. I think the main reason I’m having problems sleeping now is due to my shoulder pain. No matter how I lay I can’t see to get comfortable. My shoulders are much better during the day, but once I lay down for a few hours they stiffen up, hence the discomfort and disruption in rest. I’m slowly coming to the conclusion that sleeping pills (or other aids) are a “tool”, and it’s absolutely imperative for me to get good rest right now. I very well may consider going to see my primary care doctor for help in this area… She’s a great physician, and together I know we’ll come up with a plan to help me get better rest. I might go see her. I’m very much against sleeping pills but I can’t very well can’t continue to sleep in the bathroom stall at work either. Or, perhaps I’ll turn into one of those weirdo’s who goes to sleep in their car during their lunch break.

    My visit with the AP doctor was pretty uneventful, even a bit disappointing. He was open and honest about the fact that he’s never had to take an AP patient completely off of Minocycline and switch them to Doxycycline. He went on to say that Doxycycline doesn’t work and that Mino is far superior. From a patient to patient perspective, we all know better in terms of Doxy’s effectiveness; hopefully I’ll be the patient to school HIM in regards to Doxy. He also said that he’s convinced that when I increased the Mino dose the last time it quote “shook something up and all hell broke loose in my body”, which I’m inclined to agree with. What’s frustrating is that he’s hell bent on getting me back on the gosh damn stuff! He’s presently looking for a compounding pharmacist that will compound the Watson brand Minocycline to 5 mg capsules- and he wants to slowly re-introduce it once I’m feeling better. I think he’s secretly trying to kill me… that’s what I think. I’m really not a fan of this approach- I know my body, and I know for a fact that the Mino is just too much for me to handle. I’m not saying it doesn’t work, clearly it has, but my system absolutely cannot tolerate the drug. I’m hoping I begin feeling better sooner than later so he’ll back off on the gosh damn Mino! In terms of lab work, he didn’t want to do anything this time around, as my dose of Doxy is so low he doesn’t feel like it’s really effective. As far as an increase in Doxy goes, he always leaves that up to me, telling me to listen to my body.

    Since I’m experiencing some “overall” improvement, I’ve decided to increase my Doxy from 10/20/20 M-W-F to 20/20/30 M-W-F. I’ve been on Doxy for just over 1 month- I think a 30 mg increase is perfectly warranted at this point; if not I’ll just pull back on the dose- my body will tell me if it’s too much. I know some people reading this might think I’m not taking enough of the drug for it to be effective, or that I need to increase it faster… I know this is no cake walk, but I need to maintain a certain lifestyle in terms of a professional career. If I do too much too soon I’ll end up completely non-functional, and not working is simply not an option. Besides, I actually like my job and I think it’s good for my mental health- it takes my mind off all the crap that’s going on.

    That’s it for now.. Hope everyone is doing well!

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