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  • #372651
    Calida
    Participant

    @milo wrote:

    Hey All,
    I had my appointment with my new Dr yesterday…..
    I feel heartened, my only struggle is trying to get my brain to work so I can take some resonsibility for knowing my treatments and what tests results mean and staying connected to my body so I know what is happening, I have been in so much pain that all I really have identified is more pain or less pain not always why I have less or more.
    I’m on a fairly limited diet, but I don’t where the heck along the way I got so sensitive to everything, I thought I was tougher and more resilient.
    I’m still anaemic but I’m hoping that will improve, one step at at time, new Dr renewed hope. milo

    So happy for you milo! Your doctor sounds wonderful, the kind we’d all love to find.

    Please don’t despair about the brain fog. I’ve spent over a year attempting to write posts, emails, and speak fluently but my mind wouldn’t allow the words to flow. I missed meds and doctors appointments because I couldn’t remember much. Part of it was the pain, I think. It’s getting better. LDN helped with pain and an overall sense of well being and the antibiotics are helping with everything else. Changing my diet helped when, suddenly, I became sensitive to most of the foods in my regular diet. Now I’m able to add my favorites back into my diet little by little without triggering pain and flares. I think it means my gut is healing, too.

    I hope you don’t have Lyme or co-infections but, if you do, it sounds like your new doctor can handle the complexity.

    It’s so nice to read good news. Thank you for sharing 🙂

    All the best
    Cali

    Dx: Diffuse Systemic Sclerosis/SLE overlap, Raynaud's June 2013, Lyme August 2013
    AP: Azithromycin (Teva) 250mg BID, May 2014, Clindamycin 600mg every 8 hours for 2 weeks July 27, 2015 - Aug 10, 2015
    Minocycline (Teva generic) 100mg BID November 20, 2014
    Meds: LDN 3.5 mg, Prednisone 5 mg (discontinued), Aspirin 81mg, Liposomal Artimisinin 50mg QID x 3 weeks, 4th week off, rotating (discontinued May 2015, restarted 2016 7 days per month), Daily Nystatin, 2 tabs BID, as a preventative measure
    Supplements

    #372652
    lynnie_sydney
    Participant

    Hi Milo
    Glad your appointment went well. And think it’s very good that Dr D ordered Lyme and co-infection tests. Sounds like that needs to be ruled in/out. Also think commencing with prebiotics sounds like a very good idea in the aim to getting your gut back to health. Must be good to feel heard. She is good like that.

    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)

    #372653
    Pip
    Participant

    Great news, Milo.

    It will get better.

    Pip

    #372654
    Anonymous
    Participant

    Milo,
    I am happy there is a hope you will improve. What dose Naltrexone do you take?
    Best wishes,
    Linda L.

    #372656
    Anonymous
    Participant

    Oh Thank you so much for your support and replies, it’s also nice to hear from you Cali and that you too have been on LDN.
    Where else would I recieve the therapeutic value of the support and kindness I recieve from you all, thank you.
    I have been prescribed 1.5mg LDN I think 2x daily but need to check with my Dr again about that.

    I started taking 50mg doxycillin daily on 27th August, so its really only been 5 days, this is also when I began the LDN (but in 1mg). I felt a bit ‘buzzy’ after the first 3 doses of LDN and I felt like some of the inflammation in my body had ‘cooled down a bit,’ still have pain but somehow felt lighter in myself but also I felt incredibly exhausted, on day 4 I began to ache all over, even my toe nails were sore, everything ached for 1 day and 2 nights and sooo exhausted, just couldn’t get the energy up to move off the couch, I took 2x 1mg LDN last night before bed and have had some relief from the aching all over today.
    Not sure what that aching all over was, all my muscles ached as well as joints.

    I think the LDN has helped to lift me out of the despair as well as regulated my immune system a little and is reducing some of the heat in my body, amazing drug that LDN! For me at this point in my journey anyway!
    I am welcoming of and grateful for any little bit of relief that I can get.
    Thank you for your kindness, Milo

    #372657
    Anonymous
    Participant

    Milo,
    Please keep us updated. How are You?
    Linda L.

    #372658
    Anonymous
    Participant

    Hi there,
    I have been a little over a week on naltrexone and have found that for now 1.5mg every night before bed increases my endorphines and relieves my despair, it also helps with the morning stiffness so I no longer need assistance to get out of bed or to walk to the bathroom, also my body feels cooler like some of the inflammation has been reduced and my immune system seems a little happier! I can differentiate more between what is arthritis bone pain and ‘other’ all over pain.
    I do not know the words to express what joy that brings me, but you all know what I mean…I am no longer in agony I’m just in pain, I find it difficult to clarify exactly what the naltrexone does, I know that I have some relief and I am incredibly grateful for that!
    I have been told that I need a hip and knee replacement, the surgeon has suggested having an injection of cortisone into my hip first, has anyone else had this experience?
    I’m reluctant to agree to surgery when I have not been on the AP for long and would like to see what magic the AP works on my little body first!

    Its so nice to to be out of the all consuming agony and despair…so so so nice. milo

    #372659
    Woods1977
    Participant

    Hi Milo,

    So glad to hear that LDN has provided you with some well needed relief! Although I don

    #372655
    lynnie_sydney
    Participant

    milo
    so great that you are noticing positive changes and are generally feeling better.

    I have been told that I need a hip and knee replacement, the surgeon has suggested having an injection of cortisone into my hip first, has anyone else had this experience? I’m reluctant to agree to surgery when I have not been on the AP for long and would like to see what magic the AP works on my little body first!

    This is absolutely your decision and I can understand why you would be reluctant at this stage. Also hard to know how your body would respond to an “assault” on it such as this, particularly if you have lack of muscle tone from not having been able to move a great deal. It might be that AP may allow you to start moving more and regaining some muscle tone and fitness before undertaking these kind of surgeries. Might be an idea to run this past Dr D and get her ‘read’ on it. That’s what I’d do.

    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)

    #372660
    Anonymous
    Participant

    Hi again,
    Thanks Woods for your support, I wish you all the best for your recovery too.
    Thank you Lynnie, that is very good advice and you are right I have very little muscle tone through inactivity and my body doesnt need something as impactful as an operation at this moment, I will talk to Dr D, I have an appt with her next week.

    Last night I experienced lots of deep bone pain in my sacram, hip and knees, my jaw and all my fingers and toes and the bottom of my feet felt swollen.
    I have come to realise just how much pain we all “PUT UP WITH” or “NORMALISE” this pain has probably always been there but because the all over pain isnt screaming at me, I now notice the rest.
    We are such a brave lot. milo

    #372661
    A Friend
    Participant

    Pip, Jill, All,

    This is a link to the Budwig Center I found recently. Remembered the discussion we had on this link. There is much good information that will help correct our cells… even with the DNA involved in them, per the article. I must mention again that I believe my “accidentally” beginning using these ingredients — but never having heard of her or her research — when I was trying to stop a wasting syndrome, probably saved my life. To repeat what seemed later a miracle to me, the wasting stopped, I began looking like the picture of health. Two or three years later, on routine neck x-rays, my neck was fine, but what was seen in outlying areas of the neck were thought by the radiologist to be metastatic carcinoma… and further testing showed these to be all over my body, including the liver, bones, etc.

    This link has much more information than I have previously read about the Budwig Formula, even that it can reverse some of the errors in DNA. To me that sounds amazing. Dr. Budwig’s work caused her to be nominated for outstanding awards. Yet she seems to be ignored by mainstream medicine.

    It’s back to my family patient who is still hospitalized.

    http://www.budwigcenter.com/

    AF

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