More antibiotics :(

More antibiotics :(

Ive just had the results from the swab of the calcinosis lump on my left knee and have to take more antibiotics boo hoo ! Having had almost a 2 week antibiotic free period - the first time this year, and I had just about controlled the internal candida which had been on a frolic of its own thanks to the continual dose of flucloxacillin 500mg 4x/day. (I am on year 16 of the scleroderma and raynauds joyride ;) )

This time I am being prescibed Erythromycin as after the numerous years of flucloxacillin, I think I must be immune to it ! although, the GI side effects and after the first few days I struggle to swallow the huge tablets, remind me that I am taking it !

Anyone else have any success stories with antibiotics and calcinosis ?

I have been advised about iv Immunoglobulin G's healing properties, I did pose it as a question on here a few weeks ago, but did not get any replies ! so I think I will discuss this treatment on my next visit to see the wonderful Wizard of the Royal Free ! (not sure what the wonderful Professor Denton would think of this description haha )

and in the meantime, I guess I will just have to keep rowing my boat gently down the stream, Living the dream :) x

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  • Forgot to mention- it has been in situ for at least 18 months, and I have been confined to a pair of fleece lined, loose track suit bottoms for the duration :) the glamorous eskimo look ;)

  • That looks sore! I too have calcinosis, but it hasnt got infected. I am a vegan, and am convinced that a dairy free diet has helped with some aspects of my scleroderma, particularly with inflammation which dairy has always been linked with. My photo shows the calcinosis coming out my thumb, its very odd to be sure!

  • Hi inkedup ! I think you may be on to something there about cutting out dairy - i did this in december when i started my juicing epiphany. I have soya milk with museli and soya yoghurt in smoothies and I have definitely noticed a difference with less sinus congestion and stomach pains.

    Presumably dairy is too much of an inflammatory stimulator? and when you read how milk is pasteurised and the anitbiotics which are administered to the cows, I find I dont really want to put this into my body !

    I would be really interested to read a blog about your vegan diet if you felt up to posting about it on here ? I am sure others would too ?!

    there has been recent scientific proof that the stomach and the mind play a huge role in well being, and if there is inflammation in the stomach, this sends out the inflammation signals around the rest of the body ..... howdy doo autoimmune cocktail ingredients ! Another reason why stress and scleroderma go hand in hand ;)

    What aspects of your scleroderma would you say your diet has helped with ?

    I have cut out carbs and meat also and feel almost back to pre-diagnosis days, except my body is very stiff ! similar to wearing a tin man outfit ! Thats the second time on this site today that I have used The Wizard of Oz as a reference so I will take that as a sign that I need to be following the yellow brick road and replace the Ugg boots with some dainty, red sparkly numbers haha I wish ! thanks for replying :) x

  • so sorry to hear of all your troubles...I guess we all have our own little nightmares. I can sympathize with your knee pain, as I have had 2 knee replacements in my right knee and now have swelling and bone calcifications all around the knee joint. and limited mobility. I have fibro, sjogrens, raynauds, neurapathy, etc....not the scleroderma. My doc has me on pain meds and cymbalta. I haven't tried any of the meds you all have discussed? I do have trouble healing, and require antibiotics quite often...my mouth is really bothering me...so dry it hurts to swallow!! The whole inside of my mouth feels like it's on fire! does anyone else feel like that? changed your taste buds?burning sensation? miserable to even brush your teeth?

  • ah thank you, same to you - I am sorry to read about your challenges !

    I can relate to the dry mouth - I always have to have a glass of water nearby, or a bottle of water in my handbag if I am out (usually at a medical appointment !) I feel similar to a baby who has to have its bottle haha ! and no, no alcohol in there as I gave my body a rest from that liquid refreshment a few years ago.

    The description you give about the burning, I can only relate to something similar when I have been on an Iloprost drip. I wasnt even able to have a sip of water without my mouth going into spasm / pain like sensation. Infact I am almost lost for words to describe how that felt, except to say that it was horrendous !

    I hope things ease up for you soon, and thanks for sharing :) x

  • I eat lots of tofu and veg protein, Holland and Barrett and Chinese supermarkets are a good place to start. I make shepherds pie, spag bol etc with veg mince, lasagne too, and nut roasts are good for a roast as are linda mcCartney sausages for a fry up. Its a lot easier with soya milk and yoghurts. I have noticed a big difference with my raynauds, i,d say thats the biggest benefit. I work full time, yet i have multiple autoimmune syndrome, so i must be doing something right! I am having an op on the arthriitis in my foot soon, but intend to take up yoga after. Good luck!

  • ooo I will check those out thanks ! I would so love to have my condition under control that I can return to work..... thanks for some tips on helping me achieve that ;) x

  • I love this site DOWN is how i would describe how I feel at the moment so down in fact I came to bed at 7 30 then remembered had to send in gas meter readings went on my email and there is all this stuff from all you positive folk out there and I just had to reply or at least add a bit.

    My GP is lovely and I said a while ago to her that I was donating my body to medical science when I leave this mortal coil she laughed and said I had so many things wrong they would have to write a book just about me .

    Heres the list Raynauds [obviously] Haemochromatosis, arthritus, coaeliac disease,hole in my heart, carpul tunnel syndrome,degenerative spine disease, osteopaenia, and recently told have bowel and bladder prolapse. I am usually able to get along without thinking to much about any of it but do not seem able to keep arthritic pain which is probably caused by iron deposits in my joints because of the Haemochromatosis under control. Soooo I am feeling fed up as I said earlier.

    Sorry for the moan but was going to Rheumys GPs from mid twenties I am now sixty and all of these things only diagnosed in last 3 years so for years felt as if I was a crazy person funnily enough I now go to prescription art which is for people with a mental illness wonder why I now also have some mental problems could it be because for years Doctors told me all my pain was in my mind!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Thanks for just being there best wishes to you all

  • ah kaabb.... wowee you certainly have made up for lost time on the diagnosis labels, to go for years of not being taken seriously to owning your own compendium ! bless you ! my heart goes out to you that for the best part of 40 years you were in the wilderness. At least you now know what is going on and can make informed choices for your personal well being eg. if you need to rest - it is fine to, etc.

    It is a challenge to remain upbeat when dealing with constant pain at the top of a long list of other symptoms. I think you have done brilliantly to suffer in silence for so long - well, now is your moment to get distributing the awareness leaflets to all and sundry so nobody else has to go through the period of ignorance you were subjected to ! of course when you are feeling up to it ! have you seen the information available on the raynauds and scleroderma website ? raynuads.org.uk

    As well as, have you read 'You can heal your life' by Louise Hay ? This is like a bible to me ! Louise healed herself fom cancer and the book focuses on the mind / body connection for restoring the body back to well being. There is also a free radio station hayhouseradio.com which has really helped me in all sorts of ways with dealing with my diagnosis from the nutrition I put into my body to the power of my thoughts and mind energy.

    Thanks for sharing part of your journey with us here. I hope you do something you really enjoy this weekend ! My motto for this year is 'I want to feel good' so basically, if it doesnt make me feel good, Im not doing it haha!

    sending love and rainbows your way :) x

  • thanks for that I had not heard of Louise so will definitely be finding out about her and funnily enough getting my hair done today and for the first weekend since Christmas one of my brothers is taking out our parents instead of me. Sounds terrible put like that but Mum has dementia and I spend a lot of time looking after my Dad so the odd day off is a blessing.

    Love the idea of only doing what makes you feel good have been trying that by going to the art group.

    Take care thanks for the rainbows have a lovely weekend

  • ah Happy days :) I am glad you are feeling better today :) x

  • update on the antibiotic and knee experience ; day 2

    my knee is throbbing, swollen and sore and is aggravated every time I bend it. I can only cross my legs if the oh so special knee is on the top! and the 3 antibiotics I have had so far have started off my acid ! I have to wait 2 hours after taking one of the anitbiotics before I can pop an omeprazole so have returned to the feeling of 'there is a liquid brick at the back of my throat' and if I have to stay upright for fear of more acid at the back of my throat.

    I am still in the fleece track suit bottoms, no uggs today as I have thick tote socks on and the sun is shining in my lounge so it feels like Barbados haha Happy days living the dream :)

  • update on the antibiotic and knee experience ; day 3

    my knee is still throbbing, swollen and sore but not as much as yesterday. I have my trusty faithful track suit bottoms in the washing machine andso am wearing another pair which are not as loose around the knees, andso my knee lets me know every time there is contact ! so sore....

    I only managed 3 of the 4 antibiotics yesterday - i just couldnt tolerate any more as the acid sort of settled after I had to wait 2 hours post taking an antibiotic to take an omeprazole. So today I am watching the clock every 3 hours to try and get the required daily dose of 4 antibiotics per day into my system.

    So far today I have had 1 antibiotic and the acid brick in the back of my throat and middle of my oesophagus is forming nicely. I also feel that I could be sick any second with any sudden movement ! not much chance of sudden movement with the body turning to stone diagnosis!

    I can also feel my tongue tingly so I hope the candida isnt thinking it can take up residence again there ! another phone call to the GP tomorrow for more antifungal wall paper paste to put on my tongue if it doesnt get better !

    No Barbados today - the heating is back on ! So I am planning on having a musical extravaganza in my lounge this afternoon ! living the dream ! Happy sunday everyone :) x

  • update on the antibiotic and knee experience ; day 4

    My knee is not as painful though still very swollen and tender to touch. And everytime it makes contact with my tracksuit bottoms (did I mention I have to wear track suit bottoms all of the time haha;) argh !), it sends a bolt of pain throughout my body.

    As for the antibiotic consumption - I am cooking ! I can not bend forwards at all, for fear of being sick, although I do not feel as though I want to be sick/ nauseous; it is the acid brick which is in my chest and throat making me feel like this ! I have taken an omeprazole today so that has calmed it a bit.

    I am encouraged that the erythromycin seems to be having an effect on the infection. As I spent most of last year on flucloxacillin to try and combat the infection with little success other than to send my GI system into a frenzy and an overload of candida culminating in my mouth ! most unpleasant for the best part of 4 months !

    so far, today has been a good day, the sun has been out although it is very windy and at least I managed to venture across the threshold even if it was only for an hour to my favourite place other than the hospital ... Morrisions !

    and skwiglee will be proud of me as I rang up about booking a hot stone therapy on my face, so I am waiting for them to return my call ! wehoo living the dream ! :) x

  • update on the antibiotic and knee experience ; day 5

    oooof.... not only is there stuff coming out of my left knee but also stuff from the calcium lumps on my right knee which have been bubbling for the last 6 months, AND the calcium lump on the right bridge of my nose has decided to join in the party resurrecting itself.

    so on the plus side the erythromycin + sunshine combination are causing calcium breakthroughs ! and the erythromycin tablets are not as difficult to swallow as the flucloxacillin tablets. By now on day 5 of flucloxacillin I find it a huge struggle to swallow the capsules.

    My left knee is still swollen and still tender to touch but it is not as painful, so the nausea / acid roller coaster is the flip side !

    and as for my gut : the acid brick has now transformed into a volcanic fire which starts at the base of my stomach. so the next decision is do I take another antibiotic, as it is time to, or an omeprazole to quash the acid ? ..... I think I am going to take another antibiotic even though it will aggravate the acid, but I really want to get on top of these calcium lumps ! They are no short term project - they have been in situ and I have been trying to evict them for a few years..... 4 or so.... and the ones that have healed have left quite deep scars as a reminder of their hit spots !

    My tongue is tingling away and my good old faithful pick me up toffee popcorn tasted really salty yesterday, so i think the candida is trying to gatecrash in my mouth again ! I have not been eating any carbs / yeast products for the last 4 months so I am hoping that this is depriving the candida of its survival source !

    All in all though, the warmer temperature most certainly helps, as well as I was able to downgrade from the Ugg gloves to magenta pink thinsulate ones ! unfortunately, I have potential ulcers starting on the tip of my little finger on my left hand, as well as the tip edge on the 4th digit of my right hand. I am lucky that I have natural strong nails which assist with the typing, and now that I am not at work, I can paint them any colour which I like !

    wehoo, Living the dream :) x

  • update on the antibiotic and knee experience ; day 6

    wehoo things looking up ! my left knee is still swollen but not as tender and not erupting as much, as well as my right knee has settled a bit although there are 2 bumps under the surface of my skin, bubbling away ! and the one on my nose has settled but still tender to touch.

    I am hoping this dose of sunshine is helping with my defrosting and revitalising my blood to heal those cells whch need to be nourished !

    My finger tips are still sore with my third finger on my left hand very tender and splitting on the joint.

    My face has been burning today. I am not sure if this related to it being sunny so that would be about right - when the sun comes out I can strip some of the layers off, but have to wear a balaclava to protect the skin on my face ! I knew scleroderma and raynauds would throw soemthing else in the mix just as I was looking forward to removing some layers ! haha !

    At least the acid has settled itself, although I have been disciplined with my eating times as well as keeping up with the juicing. Week 20 completed today ! and its May day - Living the dream :) X

  • update on the antibiotic and knee experience ; day 7

    OOoooops after I took my last tablet for the day yesterday, I noticed that I have been taking a lower dose than prescribed oops !

    So today I have been taking the 500mg 4x/day regime. Whereas before I only took 1tablet which I now know is 250mg doh ! anyway, in a way I am sort of grateful for this mistake on my part since I have really struggled with the acid and if I had been taking the higher dose, i probably would have had to stop mid course as the acid really was very uncomfortable.

    So I am hoping that this sub dose which is now being turbo boosted from today will be sufficient to zap the gram negative bacteria which has taken residence in my knee tissue for the best part of the last 15 months !

    The acid has already let me know that it likes this higher dose so I am going to have to grin and bear it for a few days, with some yoghurt and cream crackers as emergency soothers ! not at the same time though !

    All in the name of calcium knee gate haha ! Living the dream :) x

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