Please Assist- Has Anyone got Modic Changes in their Spine & tried Dr Hannah's antibiotic protocol (MAST)?

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Hi there. I was wondering if people could help me please. I wanted to know if anyone sent their MRI scans of their lower back to the MAST centre to be assessed for modic changes? I have sent mine in June, and I started the antibiotics 5 weeks ago with no improvement yet. I have chronic back pain and also ankylosing spondylitis.

I would really like to chat with people out there that are also on this MAST- modic changes protocol and to see how its going.

This is my only hope now for my lower back pain.

Thanks

Rosary1

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  • Posted

    Hi Rosary,

    I sent mine to Dr Hannah and began treatment 4 weeks ago. No change yet, but then they did say that it'd probably take 6+ weeks before any change. So we must have patience! It's also my only hope - I'm only in my late 30s and have increasingly debilitating pain that is untouched by conventional treatments. I don't even want to fathom the future if this treatment is not successful. I think there have many with their hopes and dreams pinned on this potential 'miracle".

    Please keep in touch and keep me updating on how you're getting on. And I'll do the same And anyone else who's started or completed the treatment, please post here too.

    All the best.

    M

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    • Posted

      Dear M,

      Could I trouble you for a lead to consult Dr Hannah please? (I have chronic back ache). Many thanks

      Ashley (_____)

      Patient Moderator Note: I have removed an e-mail address from this reply as it is the policy of patient.info to not publish these within the forums. If any user is interested in this removed information the please use the Private Messaging system to request such. Thank you.

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  • Posted

    Hi Maggieolan

    Thanks so much for replying to my post. I feel relieved that there is someone else out there who is also on the same treatment. I am very sorry about your back pain. I know exactly what you mean when you say this is your only hope.

    I have no improvements yet, I started on 1 Aug, but on "half" the dose because I have stomach ulcers.

    On 3 Sept I started the full dosage of 3000 mg per day. No change yet. I am hoping this works, am so worried what is going to happen if its not going to work. I have modic changes 2 on my L5 , S1 level.

    I cannot have physiotherapy or massage, can't do exercises, cannot sit or stand or walk for more than 10 minutes at a time; and every bump on the road I feel it in my spine like intense pain when I sit in the car. The back pain has controlled everything! Prior to this problem, I was very healthy and fit.

    Please let me know how you doing?

    Did you have modic changes 1 or 2?

    And what are your symptoms?

    When did your back pain start and how- did you get hurt?

    Sorry for so many questions :-)

    Thanks again, and I just hope this treatment works for us.

    Take care and hope to hear from you.

    Rosary

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  • Posted

    Hi Rosary,

    My changes are Modic 1. It's now 7 weeks since the treatment and I'm still experiencing severe morning pain (trouble getting dressed etc) and particularly pain at night. I can't bend without pain. And I have pretty much all the classic signs listed on the mastmedical .com website.

    I haven't seen any really perceptual improvement, although I went back to the clinic 2 weeks ago and they claim that there are smaller, more scientific changes ongoing - I scored a smaller number on pain grading on pressing the spinal area and could bend better than previously (although time of day often affects this). At the end of the day, I want to be able to get my socks on without losing the plot - and that's the recovery I'm after. Not there yet!

    As for how I got hurt, I'm not entirely sure - likely a bike fall perhaps, but I have a herniated disk for quite some time. But the severe pain has only come on this past couple of years. So the infection metaphor certainly makes sense to me.

    I am so very sorry to hear about your constant pain. It sounds absolutely debilitating, really making your life intolerable. Nobody understands quite how horrific constant pain is, do they, unless they suffer themselves? And it's awful to have it feature so much in your lifescape. I absolutely pray to the gods/universe that you get relief. How did you get injured?

    Maggie

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  • Posted

    Hi Maggie

    Thank you so much for your prayers. How are you feeling...any signs of changes/ improvements yet?

    Am very sorry to hear about your pain, I know exactly what you mean. And people do not understand what we go through, all because it is invisible, they cannot see it :-( Its only when they go through it will they know. Its very unfair why the human body must even pain like this!

    I still didn't notice any change yet, my pain is still constant and very bad. Its hard for me to even sit comfortably in the car.

    Would really like to know how you feeling, and how often do you go to the Mast clinic?

    Unfortunately in our country, we do not have a Mast clinic, so no doctors here support the protocol. In fact my GP is doing me a favour and prescribing me the antibiotics based on Dr Hanna's report on my spine.

    We also keep in contact with Dr Jordan at the Broadgate spine centre via the telephone and email.

    Prior to when my severe back pain started, I had an infection when we lived in London. This was like 5 years before the back pain. I am now 36 years old.

    I wonder why no one else has posted anything about this treatment on the internet yet....The testimonials I read were just the ones on the Mast site.

    I also pray for you to feel better, just hope this protocol works for us. Take care and I hope to hear from you soon. Hope you are feeling better.

    Rosary

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  • Posted

    Hi Rosary,

    You are so young to have such severe pain and I continue to hope that you will receive some relief. I have been on antibiotics for just over 2 months and next week will be my third visit to London. I am 41 years old.

    So far, I think there's been slight relief, but nothing significant. I still have severe problems getting dressed and cannot bend at the best of times. But I remain hopeful that it's early days yet. So much of the antibiotics are leeched out of the system by digestion and my modic changes are very large,so it could take some time.

    I also wonder why there's a lack of posting on the Internet about the treatment. Could it be the demographic is generally older and therefore not as likely as we are to use this mode of communication?

    I really hope that you'll feel some change to the pain you're feeling - my thoughts are with you.

    Keep in touch!

    Maggie

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  • Posted

    Hello. I'm sorry to hear of your pain. I can certainly relate. I'm 44 and have been struggling with lower back pain from DDD for over 10 years. No treatments I've tried are long term and I eventually am back to square one. I've read the reports about Dr. Albert's research and they sound very promising, but has anyone come out and confirmed that the antibiotic treatment really works? I have recently been diagnosed with Modic changes but I live in Los Angeles and I haven't been able to find anywhere that will even discuss this type of treatment or do clinical trials. Do you know if the MAST centers work with long distance patients?
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  • Posted

    hello both

    my Chiropractor has just discovered I Modic changes in my Mri scan...I am on a waiting list to see a spine specialist. I would really love to know who you guys are getting on.

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  • Posted

    Hi,

    I'm have been diagnosed with Modic Type 2 changes and have an appointment at the Broadgate centre next week to get my antibiotics and start my treatment. I'm very apprehensive about it because I feel it's my very last hope, and if this doesn't work I really don't know what I'll do. There's an astonishing lack of testimonials online. I know it's a new treatment but you'd think there'd be more first-hand stories available. After all, hundreds of people have done it by now.

    It's disheartening to read of your slow progress above. I sincerely hope it's due to the relative lack of time you've been on the treatment. I've been told not to even bother trying to discern any noticeable changes until at least 6-8 weeks have passed, but I know that'll be difficult.

    I am 42, 25+ years of back pain, 7 years of debilitating chronic pain. The last two years have just been unbearable. I know you will know what I mean. I'm laying all my hopes on this treatment.... tragic really.

    Please do post back and let us know how you're getting on (well, I sincerely hope), and I will do the same.

    Cheers!

    Jane

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    • Posted

      Jane, can you tell me how you got the antibiotic treatment for modic type 2 changes. I sent my MRI to be read by Dr.Jordan and he told me I wasn't,t suitable for the treatment because I had type 2 changes. Thanks
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  • Posted

    Hey Jane thank you for the message... I am at the very early stage of still waiting to see a specialist. It was only at this stage the Chiropractor looking at my MRI scan that she believes to be seeing Modic changes (i'd never heard of it until now) and said I need to see a spine specialist, of which I was in the process of doing anyway (on the waiting list). So after reading up on Modic changes and one site I was on MAST, the symptom checker, everything on it I could say yes to.. But as said yet to have it diagnosed and then treatment whatever that will be.I have suffered with back pain for 27 or so years ( I am 50)...but this last year it has been at it most constant, as in daily...I have no respite from it whatsoever.. Mornings are my absolute worse...I could cry most mornings but that won't help me get ready for work!. Please please keep posted on how yr treatment goes...and yes I agree, there are not enough testimonials but then having learnt this is a very new discovery, perhaps that's why. I cross fingers for you this works.

    and too, keep in touch.

    Janice

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  • Posted

    Hi Everyone

    Sorry for not chatting earlier, have been in so much of pain, am sure you know what I mean :-)

    Am still on the antibiotic treatment (full dose), and still no improvement. This is my last hope. We do not have any Mast clinics in our country, so am in contact with Dr Jordan from the Broadgate centre via the phone or email. The oethaepedic surgeon says I don't need surgery so apart from the antibiotic treatment I have no other treatments to try, and no other hope left. My back pain started when I was 30 years old, but slowly got worse.

    I am now 36 years old, and the last 3 years have been the worst ever with pain.

    Maggie, please let us know how are you feeling and how did your last appointment go? Am so glad that you felt an improvement., that is very hopeful that. And thank you for your prayers:-)

    Jane, did you go for your appointment, did you start the antibiotics? Just hope it works for you, I know what you mean when you say its a last hope. But I really hope it works.

    Scientifically the study and the treatment makes so much of sense. But they do not disclose a lot of information, and the testimonials are few. I would like to know if those 162 people were in very bad pain, could they stand and sit for long, like what were their exact symptoms..?

    -Please can you describe your symptoms, really appreciate it and it will help all of us here...am just worried what if my pain is not due to modic changes? Please let me know if you have the same symptoms on the mast site as well as- difficulty travelling in a car like you feel every bump on the road and it hurts your back, difficulty climbing steps, difficulty standing and sitting for long, and walking, and dressing up?

    And how do you feel you got the infection from, did you have any abscess or general infection prior to your disc getting herniated?

    Many thanks for your help

    Really hopes the antibiotics work for all of us. God needs to start listening to our prayers soon. This is going to be my third Christmas in agony again:-(

    Take care and please keep in touch

    Rosary

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  • Posted

    Hello Rosary

    I am very sorry to hear of the amount of pain you are in and it is a shame and equally not encouraging that the antibiotics are not helping!! What has the consultant said to this? Have they not ruled out operating on you?!

    My back pain as mentioned above does not sound as acute as yours...I can at least drive the car without pain. My pain has been full on as in every day since last November, prior to that it has been spasmodic and put in place with some treatment re Osteo....but as at December of last year Osteo was not touching the sides....so that is when I went private for a MRI scan and then went on a NHS waiting list for Physio, of which I have been receiving of the last few months and no surprise all the physio does is give me a coupe of hrs off work, They have been giving me acupuncture because I already do all the exercises I know to do and pilates of which all these do is keep me from seizing up altogether!! I am seeing a back specialist on the 19th of this month and am praying for some answers. I have suffered this since mid 20's - I am now 50! However, thank god the main sufferance has only been for this last year...I think I would have thrown the towel in before now if not!!

    Keep in touch on here.....even if it is to share your pain and talk about it.

    Janice

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  • Posted

    Hi,

    I have been diagnosed with Type 1 Modic changes L5/S1. Have had low back pain for 2 years. My consultant spinal surgeon started me on antibiotics, Augmentin 1000mg x 3. I couldn't tolerate the side effects and reduced to 500mg x 3. After taking it for 10 weeks i gave up and stopped.

    Then one week after stopping my back pain got noticeably better, about 50% better. smile but it only lasted 2 weeks and then i was back to square one. I return to docs next week.

    Have previously tried, physio, osteo, acupuncture (helped a little)

    Did I stop the a/b too soon ??

    Has anyone had any success?

    Karen

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