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  • #308027
    lemons
    Participant

    So much for me doing so well and yacking on about it too ! Past few days I have plummeted into an abyss of clicking clunking shoulders and the most dire depths of total depression. Swelling looks like its going down but I feel so desperately low, its very hard doing this protocol in the UK as there is little support and only 2 very expensive clinics that provide treatment.

    #370996
    Babylove
    Participant

    Hi lemons,
    I am sorry to hear how you are feeling. I really can’t offer much help, as I am new to this forum, and struggling to figure out what is wrong with me. But, I too having been feeling terrible lately, and I know it is so easy to become discouraged. I CAN offer to pray for you, and I will be, other than that, try to hang in there 😉
    Babylove

    #370997
    lemons
    Participant

    Babylove thankyou for support.

    #370998
    lynnie_sydney
    Participant

    so sorry to hear that you are feeling lousy both physically and emotionally.

    My only suggestions is that you detox as much as possible if you are experiencing a bad flare. If you’re in excruciating pain, then coffee enemas seem to be the gold standard in terms of relief. (You’ll find info on these using the search function). Otherwise, drink as much (pure) water as possible to flush toxins from your system and perhaps try the lemon/olive oil drink. Hope you feel better soon…..when we’ve been doing well, it is sometimes hard to remember that this is a one step forward, two steps back road.

    Be well! Lynnie

    Palindromic RA 30 yrs (Chronic Lyme?)
    Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
    rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
    Diet: no gluten, dairy, sulphites, low salicylates
    Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

    #370999
    lemons
    Participant

    Im not in that much pain, Im more clunking and clanking, everything is cracking and Its the depression that is unbearable. All my strength has returned but I feel mentally f****. If you could see my hands they are nearly back to normal and are looking good. I am also putting on a lot of weight, Im not huge but I wont be far off at this rate !!

    edited to remove potentially offensive language. Please remember that this forum is visible to anyone, including children. RBFV

    #371000
    lemons
    Participant

    P.S coffee enemas ?

    #370994
    PhilC
    Participant

    Years ago when I frequently had mild depression, I used a natural remedy — chocolate. Yes, chocolate! I ate a fudge brownie every other day. It worked. I wouldn’t do that now, though. If I felt the need I’d buy some unsweetened cocoa powder and make something chocolate that is dairy-free and egg-free.

    Depression is often caused by a magnesium deficiency. I recall reading on here that a magnesium deficiency is very common in people with Lyme Disease. I suspect that the same is probably true for many other chronic diseases as well.

    Phil

    "Unthinking respect for authority is the greatest enemy of truth."
    - Albert Einstein

    #370995
    lynnie_sydney
    Participant

    Coffee enemas have been used to reduce pain in cancer patients (Dr Gerson). It is thought that their benefit comes from the fact that coffee is absorbed by hepatic portal vein and that it might promote glutathione production. If you use the search function you will see that others have benefitted from their use

    http://www.coffee-enema.ca/

    Be well! Lynnie

    Palindromic RA 30 yrs (Chronic Lyme?)
    Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
    rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
    Diet: no gluten, dairy, sulphites, low salicylates
    Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

    #370990
    Anonymous
    Participant

    Hi Lemons,

    Not sure I can be much of a comfort but I will say you are not alone. I have been waking up way too early (4am ‘isn’) and not being able to get back to sleep (I think it’s the LDN even after I have reduced my dose to 1.5mg, but not sure)!! I wake with my shoulders in pain and my hands (although shoulders are worse right now). My range of motion is restricted because of pain and it’s awful. I also have had a few little odd pains that come and go and any new thing causes me anxiety!! This morning I simply cried and cried and then I started writing. I realized that I went on and on about how I can’t seem to figure it all out

    #370991
    m.
    Participant

    A year ago, I purchased a CET approved light box from Amazon.com

    It was one of the best investments!

    For years, I made excuses for why my mood was low and my productivity plummeted during the winter (I am in the Chicago area).

    You know, the holidays are so stressful, no one likes their birthday, who likes winter, of course I don’t feel like doing anything & I’m tired all the time!

    By coincidence, I caught an article about light box therapy, did some reading at Columbia U’s web site, then found CET.

    This is my second season using a light box. It has made a huge difference. I wouldn’t say it makes me feel happy, but it definitely keeps me from slipping into a hole. I feel more optimistic, more productive, and less sleepy during the day. I’ve found it firms up my wake sleep times, that is, it is easier to wake up in the morning, and I fall asleep readily at bedtime.

    I bought a CET approved light because I wanted a product that has been clinically proven to work. http://www.cet.org

    My teen uses a CET approved dawn simulator alarm with the recommended overhead light, and finds it is much easier to wake in the morning, plus she isn’t groggy all morning at school.

    Light box therapy, dawn simulator alarms & light systems, negative ionization machines, microdose melatonin, have been proven to work. You don’t have to be “clinically depressed” to benefit.

    I’ve found that I get the greatest benefit from about an hour in front of the light box in the morning. After I drop the kids at school, I have coffee & breakfast in front of light, and do some reading or watch a show on my iPad.

    If my routine gets disrupted and I miss a few days, I begin to notice a dip in mood plus energy.

    I wish I had known about this years ago!

    #370992
    Anonymous
    Participant

    M.,

    Thanks for that info. I live in Florida so getting sun is not an issue for me but I have seriously been contemplating the impact of EMF’s and may soon purchase an ‘earthing’ sheet and/or pad to help counter those. Have you heard about this? I read a thread yesterday and many people on here have benefitted from ‘earthing’.

    Thanks again for sharing.

    Roberta

    #370993
    DragonSlayer
    Participant

    Hi, lemons:

    I am somewhat skeptical of “seronegative” label, and would want more information: Especially HLA B27 MHC test. “Crepitus” (loud poping and crackling joints) is very common in AS (Ankylosing Spondylitis), as are other factors–vitD deficiency (S-A-D), ROM issues, and crushing fatigue as well as distributed pains.

    In defense of coffee enemas, these are in fact useful therapy in all kinds of arthritis, which are universally diseases due to problems of “dross elimination.” The mild coffee is a surfactant and acts like a soap, in addition to other potential benefits. Also important is to drink enough fluids and best choices in RA might be cranberry juice or unsweetened concord grape juice.

    But also, it is important to battle inflammation by taking EFAs, especially GLA (borage seed oil–in some considerable quantity) and EVOliveOil by the teaspoonful throughout the day (maybe 5 or 6 times–not enough to produce any gagging). And during times of more severe inflammation, I took 4-6oz fresh wheatgrass juice on an empty stomach–typically 3 days in a row. But fasting was always the best way for me to eliminate inflammation; my own disease was very food-related and I stopped eating all starches for several years. AS is highly cyclic and one day can be very normal but the next day impossible to get out of bed–and it is all diet-related: Deep-fried starchy foods would totally freeze me up. I have heard from some with RA that cutting out starches does help reduce their inflammation, just as Mercola suggests.

    The light box is a great idea, but oral VitD is still very important.

    Hope You find relief soon–it is good to experiment and even keep a food diary and chronicle symptoms.

    HEALTH,
    John

    #370988
    lemons
    Participant

    Hello Forum, a big thank you to: Dragon slayer, Roberta Angelina, M, Phil C, Baby love and especially Lynnie Sydney for all the replies. Lynnie I was being sarcastic about the enemas, I would try anything if it helps !

    #370989
    Woods1977
    Participant

    Hi Lemmons,

    I can absolutely relate to doing really well on AP, then hitting rock bottom. I myself reached a point where I was doing really well, then slid backwards to a point where I could barely function. To your point, I had the “cracking shoulders” and creeky joints, and I literally just felt like walking death. I went through this phase for about two months, and I honestly couldn’t determine whether I was “herxing” or “flaring”. I was at a point where I coudln’t even tollerate 50 mg of Minocin a week, so I had to discontinue using it. I tried Doxy for a while but never had any improvement.

    In November, 2013, my AP doctor decided we should give Mino another chance, but only increasing the Mino in 10 mg increments. Please don’t judge- I know there are several people on the site who feel this is too low of a dose, but it’s my journey and I need to do what works for me. During this time I ended up taking a 10 day break before starting my ramp-up, as I was waiting for a compounding pharmacy to re-formulate my Mino to 10 mg capsules, so I had a nice wash out period.

    We started with 20 mg/week, M-W-F. I noticed that I began feeling better following the washout period, much better actually, and I was able to tollerate the low dose of Mino. Although I’m improving at a snails pace, I feel like I’m reaching a new milestone every 4-6 weeks. My energy levels are much improved, and this morning I forgot to take my Aleve when I got up, which speaks volumes. Don’t get me wrong, I’m not where I want to be, but I feel like I’ve returned to the land of the living again.

    The point of me sharing this with you is that maybe you could re-evaulate your current dosage, or perhaps consider a wash out period? Our individual journeys on this site are very unique; this is definitely not a one size fits all therapy. Please don’t give up- I know personally how difficult it can be for some of us.. It’s very discouraging, and at times I’ve asked myself whether or not I’ve made the right decision. Please hang in there… We’re all here to support you!

    #370987
    lemons
    Participant

    Hello Woods ! Im not going to give this AP up, ( I have no alternative, as Id rather a wheel chair than succumb to the miserable predictions forecast by my rheumatologist).

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