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

Hi again everyone,

Just a quick update. I have now got my antibiotics ready to begin my treatment, but I haven't started them yet as I'm waiting for some very strong probiotics that I've ordered to arrive, to take alongside them. If you're on antibiotics long term it can seriously interfere with your gut flora and cause gastro side effects, so it's very important to support your system this way as yeast overgrowth can occur, leading to nausea and diarrhoea and also thrush. I myself have suffered this way when I've taken normal, short term dosage antibiotics in the past, so I know I am prone to it. I am dreading starting the treatment for this reason, to be honest. But if it works, this will be a small price to pay.

The downside is that probiotics are extremely expensive, but if anyone is interested, this is what I've been recommended by a nutritionist friend. vsl 3 - or any other that contains at least a daily dose of 100 billion viable organisms and has been kept refrigerated. Check that they are delivered in a cold pack if you order online.

I have Type 2 changes in L4 and L5. As far as I know, only a handful of people with Type 2 are on this treatment (in the UK at least, more in Denmark I think) as all the original research was done on people with Type 1. Feels a bit like a jump in the dark, but I'm willing to try.

At the clinic I was asked to fill in a questionnaire with about 30 questions related to things I can and cannot do without pain - I think I said no to 28 out of 30! No, I cannot make my bed, no I cannot put my socks on, no I cannot pick something up off the floor etc... I suppose this is a good way of measuring progress throughout the treatment, but it made me realise just how curtailed my life has become!

As for my symptoms, well... I don't think I am as acute as some people above (Rosary for example). I can still just about live my life, and manage to disguise from most people how bad my pain is. However, it does affect every single area of my life. In the mornings, I can barely move. I stagger to the bathroom holding on to the walls and banisters. It takes me ages to get dressed and I have to sit on the side of the bed or hold on to the side of a table to do it.

First thing in the morning, I cannot lean forward enough to turn the tap on at my sink to fill a glass of water. Filling the kettle is too heavy, and I have to lift it with both hands, and stand with my feet quite far apart. Bending forward in any way is an impossibility. I lean to the side or even backwards if I need to pick something up off a low table, for example.

I can't do any form of exercise at the moment other than walking. I tried one-to-one pilates earlier this year, but I just found it impossible. Getting down onto the floor was just excruciating, and that was even before we did any of the exercises!

I have a very comfortable office chair that I can sit in, but all the other chairs in my house are extremely uncomfortable for me: sofas, dining room chairs, etc. Either they are too soft, or too hard. Whenever I go out to a cafe or restaurant, I worry in advance about what type of chair it will be. A too-hard cafe chair will trigger my sciatica terribly. I am constantly turning down invitations from friends etc. I would love just one day of being able to sit in a chair and read a magazine comfortably!

My actual pain is a mixture of things. When I wake up, I feel completely mangled, like my entire body has been taken apart and put back together wrong. I ache very badly, with loads of individual very tender 'pressure points'. I feel like an axe is wedged in my spine while I'm walking. Sudden movements put my back into spasm, almost like an electric shock running through me, so I try not to make any. As a result, all my movements have become very measured and contained. I think/worry about every movement before I make it, from getting up out of a chair, to loading/unloading the washing machine (agony). Things that I find most painful, and most likely to trigger a spasm, are getting in and out of a car, turning over in bed, twisting round to see something behind me.

I do get some relief from walking though, and I try to walk 3 or more miles every day. The first mile is always agony, I have to stop, lean on a fence - often in tears - and wait for a bit. But if I carry on, it gets better. And by the end of my walk, it is a lot better. It sets me up for the day. I am fairly fully functioning between the hours of about 10 and 4, when it starts to get really bad again. Evenings are just as bad as mornings. I just don't know what to do with myself. Can't stand up, can't sit down. You know what I mean, I'm sure.

I take painkillers every single day.

Anyway, that is enough from me I think! I will update this again once I've started the antibiotics and have some more news.

Good luck again to everybody. It's good to know we are not alone.

J

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Hi Janice,

the side affects when i reduced to 500mg x 3 were not too bad, a bit tired, and slightly loose bowels, but i was taking pro biotics, 4 billion a day as recommended by my consultant. (acidophilus with bifidus).

i would strongly recommend anyone taking this amount of a/b's for this long to take pro biotics, but remember not to take them at the same time as the a/b's or the a/b's will kill the pre biotics.

My symptoms are similar to Jane above, worse in the morning and at night especially if i fall asleep on my back, can't bend down, stand still for long.

Good luck with the a/b's Jane would love to know how you get on, don't expect anything too soon, and complete the course as i think i stopped too soon.

Karen x

Hi again everyone. I have just finished the 100 days of antibiotics. So far, nothing remotely tangible. See my earlier post - I have large modic 1 type changes on my spine, and have trouble particularly in the morning getting dressed and if I bend. I was told I am a classic case and the consultants were extremely optimistic.

I still hold hope that the future may bring some relief as the healing process is supposed to occur over the first 6 months then extending to a year. However, I am very disappointed with the results so far. Not that I discourage anyone who qualifies from trying it - the research seems solid enough according to the reviews I've read on the web, and clearly some patients have had significant relief. Even if nothing happens, I am glad I have taken this step. Note, any side effects from antibiotics disappeared for me within weeks. But keep taking the probiotics for sure.

I wish you all success in the treatment. Even if one person on this forum is helped then all good! Back pain is so unimaginably intolerable. All the best.

Hi girls. I am from South Africa, 50 years old, and was diagnosed as follows : DDD at L5/S1 level with disc space narrowing and Modic type 11 endplate changes. Small central disc protrusion with internal annular tear.

I am SO glad I came across your discussions!!! I almost felt 'alone' . Although my pain is not as bad as JaneMSH, I can totally 'see myself' in what she describes. My worst pain is at night. Actually more from about 3h00 onwards. I wake up with pain in my hips, down my legs.Not to mention the SPASMS. I find myself turning over SO many times, that I wake up tired. Doing daily chores, has become a nightmare. One has to be SO careful what you do, how you bend - that is IF you can bend. Some days it is rather impossible. Sitting, standing, lying down..... can't do it for long periods. It is as if you have 'ants in your pants'. You have to move all the time. I feel as if my life almost came to a standstill. Where I was the kind of person who did everything myself, I know have to ask to have something moved or picked up, etc. etc.

My dear specialist did not even SEE THE MODIC CHANGES on the MRI. I asked for a report from the radiologists and started doing my own research. He also started me off on a short course of anti-inflammatory meds, which took the 'edge' of the pain for a short while. Other that that I take pain meds at night. Something with paracetamol and also Spasmed for the spasm. I have to be careful with meds, because I have Ulcerative Colitis as well.

Wishing you all the best with your various treatments!!! Love to hear from you again.

Hi there Everyone

Hope you all are ok.

Maggie - how are you feeling? Really hope what they say about the 6 month recovery period after the 100 day antibiotics come true!

I have finished the 100 days of antibiotics and no improvement at all. Am not sure what to try next because, I had several surgeon opinions for surgery , and all said my spine is not a typical surgery case. I have degeneration at L2, L3arthritis.

i have modic change type 2- diagnosed by dr hannah.

jane msh - my symptoms are exactly like yours from the morning but it doesn't end. the only difference is that i cannot walk for long- 150 feet is enough and then i have to sit. cannot sit long either. exercise makes me worse. what does your mri scan say about your spine?

charmaine , hope you feeling better. were you considering taking the antibiotic treatment?

thanks very much

god bless you all. and may 2014 be the year of healing and the ending of suffering for everyone in pain.

r and="" s1="" and="" annular="" tear="" between="" l4="" &="" l5,="" abd="" facet="" joint="" arthritis.="" i="" have="" modic="" change="" type="" 2-="" diagnosed="" by="" dr="" hannah.="" jane="" msh="" -="" my="" symptoms="" are="" exactly="" like="" yours="" from="" the="" morning="" but="" it="" doesn't="" end.="" the="" only="" difference="" is="" that="" i="" cannot="" walk="" for="" long-="" 150="" feet="" is="" enough="" and="" then="" i="" have="" to="" sit.="" cannot="" sit="" long="" either.="" exercise="" makes="" me="" worse.="" what="" does="" your="" mri="" scan="" say="" about="" your="" spine?="" charmaine="" ,="" hope="" you="" feeling="" better.="" were="" you="" considering="" taking="" the="" antibiotic="" treatment?="" thanks="" very="" much="" god="" bless="" you="" all.="" and="" may="" 2014="" be="" the="" year="" of="" healing="" and="" the="" ending="" of="" suffering="" for="" everyone="" in="" pain.="" ="">

i have modic change type 2- diagnosed by dr hannah.

jane msh - my symptoms are exactly like yours from the morning but it doesn't end. the only difference is that i cannot walk for long- 150 feet is enough and then i have to sit. cannot sit long either. exercise makes me worse. what does your mri scan say about your spine?

charmaine , hope you feeling better. were you considering taking the antibiotic treatment?

thanks very much

god bless you all. and may 2014 be the year of healing and the ending of suffering for everyone in pain.

r>

Now for some good news, I have sufferered similar symptoms as the rest of you, for the last 30 years, (I am now 58), although to a lesser degree. I was still running regularly until this time last year. (Apparently therunning most probably caused the problem). My back pain then really came on with a vengeance. MRI showed type 1 modic changes with a damaged disc at L3/4. I initially tried conventional treatments but then showed signs of stomach ulcers this summer. My Rheumatologist then offered me the opportunity to try the 100 days of Amoxiclav. I have just completed this with relatively mild problems, loose bowels about once a week, and thrush well controlled with Canestan. As explained if it was going to work for me I would not notice anything for 8 weeks. 2 days before my 8 weeks I noticed a very small improvement, this has continued at approximately 5 - 10% a week. I am now 1 week on from my 100 days and I would put myself at the present time as being 50% better.

Still worse at night in bed and first thing, but I am hopeful that I will continue to improve. So try and staypositive and give it a try if you are offered it.

Ladies best tip I was also given was to eat probiotic yogurt everyday, this really helped with the thrush.

Good Luck to you all Gilly

And for some more good news! In my last post I reported that there had been no change after 3 months on antibiotics. Perhaps I'm a late starter but about 2 weeks after I posted this (23 Dec), I started noticing that I no longer have any night pain that would awaken me every night and I sleep soundly through the night. In addition, I can get out of bed MUCH more easily and even getting dressed has become much, much more tolerable. To top it all, I ran for 5 minutes on a concrete path the other day (not my choice!), an action that would have been completely impossible 2 months back. So yes, I believe it is happening!

I'd definitely encourage anyone to try this out if it's recommended by a qualified therapist. And get probiotic supplements from the pharmacy - these contain billions more micro-organisms than a standard yoghurt so I've been taking both (and have continued to do so after the antibiotic treatment as the body also requires them when withdrawing from the antibiotics). Best of luck - I'll continue posting.