Home Forums General Discussion RA and Connective Tissue problems(Dermatomyositis)

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  • #321045
    Eva Holloway
    Participant

    Hi Maz,

    yesterday I went to Dr. K. and I found out that I also have Ankylosing spondylitis, that's why my back is acting up as it is. :crying: 

    Dr. K just changed my antibiotics around a little. no more Nizoral. MWF Biaxin, TTHSa Mino and Sunday nothing.

    She also had this LEAP blood test done in November and I have some odd allergies. Like no turkey, grapes, tea, eggplant, squash, tuna, vanilla, oregano, hazelnut, corn and a few others. 🙁 Cooking and food shopping will be fun. My family likes to have spaghetti sauce and stuffed bell peppers and she also told me no tomatoes, bell peppers and paprika.:doh:

    Oh well I will try and see how I can change my diet around. I got several sheets with what I can eat the first 7 days, then the next and so on. looks really boring. eventually I can add more foods to the list.

    Thanks for listening.

    Eva

    Biaxin 500mg 2daily  MWF                                                                                              

    MINO 100mg TTHSA

     

     

     

    Eva Holloway

    #321046
    Maz
    Keymaster

    Eva, so sorry to hear about your second diagnosis of AS. Unfortunately, there can be a lot of overlap with rheumatic diseases. My mother-in-law has AS, too, as well as psoriatic arthritis. I have RA and also the beginnings of Hashimoto's Thyroiditis. Kim has scleroderma and RA. Karen N., who was featured in the last Road Back eBulletin had dermatomyositis and lupus. These are just a few examples, but really just to let you know that it's not uncommon by any means to have some overlap. Mixed Connective Tissue Disease or MCTD tends to be the pot that people are placed into when they have an array of rheumatic symptoms that fit a number of diagnoses.

    It sounds like you're in excellent hands with with Dr RK! AS has very close connections with gut issues…klebsiella, a gut organism that has been identified as a common offender. If you go to the Progress Threads, you can read DragonSlayer's (John) account of how he healed his gut and foods he avoided. He has been in remission for some time.

    Thanks for your update, Eva, and I appreciate you taking the time to let us know how your AP doc appt went. With this doc's expert help and your persistence, you'll start to turn things around.

    Wishing you all the very best!

    Peace, Maz

     

    #321047
    Eva Holloway
    Participant

    Hello Maz and everyone,

    I hope everyone has had a great Christmas and doing well.

     I have been taking the Manuka Honey, I do feel better, but it may also be because I have been taking physical therapy. My GP decided to send me to rehabilitation therapy because now they say I also have Ankylosing spondylitis. They figured this out after all the x-ray they took of my spine and noticed the lower part of my spine is fused together from the RA and Dermatomyositis. From that it cause scoliosis of the lower back.

    Still taking my antibiotics, but now the doctor also changed some of the food items I can not eat. I had this crazy blood test done in November and they gave me the results in December, just before Christmas. I told my husband right after Christmas we will change our diet. He told me he will help me. It may help him too to lose weight.

    I am working hard on my therapy and the people are great that work there. I used to go to another place and they didn't really do much for me. Not that they didn't give me therapy but it was not geared to what I have. This place is.

    Best Christmas wishes for all.

    Eva

    Eva Holloway

    #321048
    Maz
    Keymaster

    [user=236]Eva Holloway[/user] wrote:

     I have been taking the Manuka Honey, I do feel better, but it may also be because I have been taking physical therapy.

     

    Hi Eva,

    Thanks for your lovely Christmas wishes and do hope you had a wonderful Christmas, too.  😀

    How are you 'taking' the manuka honey? Are you using it as a sinus wash? You mentioned before that it tasted nice in an earlier post, but not sure if it is supposed to be taken orally or not.

    Another great natural anti-fungal is grapefruit seed extract, which comes in drop form and can be taken orally. It's very strong, though, so has to be diluted. On the side of the bottle, it says it can be used to clean and disinfect your toothbrush, so I should imagine that if it could be taken orally, it could also be used in a highly diluted form as a nasal flush. Maybe someone has some experience here to share with this?

    Glad you're feeling a bit better with the physical therapy. It really helped me a lot in the early stages, too. In fact, I wish I could have kept the sessions going, but my insurance only covered 30 per year. They went fast, having 2 or 3 sessions per week. Still, I learned some good exercises that I could follow through with at home and that was the main benefit in the longterm….just knowing what to do to keep things moving when a joint or muscle played up.

    Much health and happiness for the new year!

    Peace, Maz  

     

    #321049
    Eva Holloway
    Participant

    Hi Maz,

    The Manuka honey can be used on bread in hot drinks it's not just for a nasal wash. on the jar it says to take 2 teaspoon full before each meal. That's too much sweet stuff at one time. My hands are peeling and I am going to buy the Manuka honey cream. Maybe useing it internally and on the outside will help.

    I do use the grapefruit seed extract. It's real strong  🙁  so it should be deluted some.

    I will keep up on the physical therapy. The GP wants to heave me evaluated after this session is over to see if I should have some more and than maybe some later on in the year. I have a TENS unit to help with the pain and I use it almost every day either on my back or my arm.

    I wish you also a Happy and Healthy 2009.

    Eva 😀

     

     

    Eva Holloway

    #321050
    Eva Holloway
    Participant

    Hi Maz and Lynnie,

     have been using the Manuka honey and it seems to work. 😀 When I ordered my second jar I also ordered the hand lotion and the woundcare cream. The manuka wound care cream is real sticky so I mix it with a little vaseline and put it on my hands then put on white gloves. Has a strange smell but that goes away after awhile. I put that stuff on about three times a day and it seems to help my hands, The real heavy scaly stuff is slowly disappearing and also the redness is less pronoun. My physical therapist told me even my facial skin looks better. She is from the Phillipines and told me she may order some Manuka honey.

    I eat the honey with my meals as they have on the jar and sometimes I put it in my hot tea. The second jar I ordered is a different strength and has a stronger tast. I may go back to a lesser strength the next time I order. I will reorder the wound care healing honey so the rest of my hands will heal all the way.

    Take care, stay well,

    Eva

    Eva Holloway

    #321051
    Parisa
    Participant

    Eva,

    I'm glad to hear you are starting to get some relief with your hands!  At least it's honey and not something vile.  There are worse things to have to smear on your body!

    #321052
    Maz
    Keymaster

    Eva, this is so kind of you to write updates about your experience with manuka honey. This will be a tremendous help to others who may be experiencing skin issues, too. I understand manuka honey has helped sclero patients with digital ulcers and knowing of its many properties, it's no wonder.

    I agree with Parisa…it could be worse! When I was a teenager my Dad would gross me out when I would put on facial mud packs, saying he thoughts cow dung would work better…he's a vet and they sometimes have a skewed vision of the world. :roll-laugh:

    Thanks again!

    Peace, Maz

    #321053
    lynnie_sydney
    Participant

    Hey Eva, so glad you're getting some good results from the Manuka Honey and thanks so much for sharing. Aren't bees the most wonderful creatures? Lynnie

    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)

Viewing 9 posts - 16 through 24 (of 24 total)

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