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

Posted , 69 users are following.

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

1 like, 254 replies

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  • Posted

    Hi everyone,

    So sorry for not updating this for so long. I am now 9 weeks into the antibiotic treatment with no discernible changes at all so far. It's demoralising, but I will keep going, and try to keep my spirits up. It is very heartening to read that some people have had success.

    What I really want to hear is if any people with Type 2 changes have noticed any improvements after the antibiotic treatment. So far, everyone who has reported success have been Type 1. The original trial also only included people with Type 1 changes.

    For info, I have a herniated disc at L4-L5 with intradiscal tear, and the same (but less severe) at L5-S1. With Type 2 Modic changes.

    I'm taking doxycycline twice per day. I'm grateful that the side effects have not been too severe. Some abdominal pains, some upset stomach issues, and at the start, days of feeling like a 'zombie'. But nowhere near as bad as I expected. So that's one good thing I suppose!

    About two weeks ago I experienced an afternoon and evening of notably less pain. It was incredible. I was still in discomfort but I could bend forward without that awful 'spasm' and electric shock nerve pain. I just stood in my kitchen, gently leaning backwards and forwards, unable to quite believe it and grinning like an idiot. I thought perhaps it was the start of some improvement but unfortunately I woke up the following morning as bad as ever, and over the past week or I think it has actually got slightly worse.

    Anyway, I have five more weeks to go so will persevere and update here again soon.

  • Posted

    Oops, I meant three more weeks to go. Wow, the time has gone quick...
  • Posted

    I hope everyone here does not lose hope. In 2004 when spine specialists at a local teaching hospital had no better advice than sending me to a pain clinic I adopted the attitude of doing what I could but kept an open mind and watched for new treatments-eventually MAST appeared. Maybe your circumstances are not MAST treatable but do not lose hope. I have a question about the antibiotics some have taken. It says in the journal article that Dr Hanna published "Antibiotic treatment in patients with chronic low back pain and vertebral bone edema (Modic type 1 changes): a double-blind randomized controlled trial of efficacy" by Albert HB et al., Eur Spine J (2013) 22:697-707. [Eur Spine J. 2013]." On page three it mentions "three independent experts in infectious diseases ... (who advised based on results from) Stirling' s study...all three recommended amoxicillin-clavulanate. This drug is known to be able to penetrate into the discs." This antibiotic was used in this trial. I wonder why some here did not use this form of antibiotic? The same article said, "There was a trend toward a positive dose-response relationship with double dose antibiotics appearing to be more efficacious; however, this was not statistically significant as the trial was not powered for this comparison(results not shown)." Because I was willing to do everything possible the first time I took a double dose. Perhaps these factors may explain the difference in results some of us have gotten. By the way, I didn't experience intestinal side effects significantly to stop treatment. They only lasted a few weeks and really just inconveniences and minor discomfort. You are welcome to email me. Lee
  • Posted

    miss93889 in contrast to your alarming assessment of MAST, I have successfully completed the treatment as prescribed in their publication "Antibiotic treatment in patients with chronic low back pain and vertebral bone edema (Modic type 1 changes): a double-blind randomized clinical controlled trial of efficacy.Eur Spine J. 2013 Apr;22(4):697-707. I chose the double dose. I had very few intestinal problems which lasted only a couple weeks and were minor and well worth taking a "risk of failure." I thank my doctor for her courage and open mindedness.

    As far as the risks of Clostridium Difficile poisoning- I am not a medical researcher or physician so I had to do some reading on this topic and do not think the threat is as large as intimated. For instance in WIkipedia "When the bacteria are in a colon in which normal gut flora has been destroyed (usually after a broad-spectrum antibiotic such as clindamycin has been used), the gut becomes overrun with C. difficile. " That's scary but it didn't happen to me or the 77 who completed the treatment in the study. From the initial 90 who were in the treatment group there were 13 dropouts - 4 because of side effects.

    I think it is fair to say most people here understand it really comes down to making intelligent decisions based on risk assessment. For example, in 2012 less than 300 people out of 3 billion travelers worldwide died in commercial aviation accidents. Those deaths are terrible but rational people realize their odds of dying this way is less than driving the same distant by car or rail. I chose to take a calculated risk rather than allowing my vertebrae to become further eroded effectively reducing me to a drugged invalid.

    I suspect a remark like "Danish researchers dishing out pills" indicates a bias and lack of respect. I am aware that there are many who oppose this new treatment as there was initially to the discovery of air travel, electricity and even penicillin. These like minded types would like to smother this research and hope it will go away. The usual motivations for these naysayers are: close mindedness, threat to professional societies; schools and seniority, and the usual professional jealousy. Lastly, perhaps you could ask your consultant if he would post for himself here the ideas that you have attributed to him. I am glad I stumbled upon the article which led to the saving of my life. I also appreciate the hard work and courage those researcher have and are making despite the naysayers. Thank you Hanna Albert, Joan Sorenson, Berit Christensen andClaus Manniche.

    • Posted

      I have recently been recommended to try the antibiotic regime by Dr Albert - I am late 30's, herniated disc 11 years ago, pain ever since with a continuous, relentltess probelm bending forwards and lifting. When I recently went to the GP to ask for a prescription they were (I guess underdtandably) very, very risk averse and stated that I risked pseudomembranous colitis taking that volume of antibiotics for so long, a possibly fatal condition. 

      It's reassuring to read your experience, and I'm approaching other individuals to seek a private prescription for penicillin. 

      Will be nerve wracking as I've now got the idea of developing a toxic megacolon in my head!

    • Posted

      The risk of C. Dif in studies is very low, and this is with any antibiotic treatment. Some are just against antibiotics, however, Modic changes, when due to infection, is a self limiting disease. You can not transmit it like the flu.

      For those against antibiotics, consider this:

       In Denmark, same as other countries that have agriculture for raising pigs, there are about 10,000 people per year who get disc herniations, half develop modic 1 changes afterwards. If you gave 5,000 of them a double dose of antibiotics for modic changes as in the study, you get an increase of 1.5 tons of antibiotics in the population per year.In 2012, Denmark farmers produced over 27 million pigs, each pig receives 3.6 g of penicillin in its life. Pigs producing almost 100 tons of antibiotics per year in meat that is consumed by people. Compare that with 1.5 tons that will help save people from disability, get them back to work and let them sleep at night. Maybe its a better idea to cut down on the pigs instead of the people.

  • Posted

    Hi,

    As requested by the user I have deleted the posts by miss93889 as she did not mean to cause any offence.

    Alan

    Emis Moderator

  • Posted

    Good morning!

    I found this forum about the MAST therapy. I thought I should let you all know about my experience. As all of you I've been experiencing severe back pain the past 3.5 years. For the past 3 years drs told me there was nothing wrong and i had to take it easy. Even specialist I consulted in the hospital told me no hernia/nothing. I could not stand for longer than 15 min, not turning in bed, bending down, car bumps.

    January 2013 I had enough. Went to a private clinic and asked what was wrong. The helped me immediately. MRI showed hernia L4-5. So april last year got the operation. After that my back went worse. The whole summer was terrible.

    In aug last year my physiotherapist was not sure anymore so she told me to go to another dr who is specialist in back problems. Went there in Sep last year. He looked at me and the situation and the MRI scans. As far as he could see the hernia was probably not the problem but the modic changes type 1 in the L4-5 were. He gave me right away a shot between the discs and gave me celebrex 200mg 1 per day for one month. After 3 weeks I was feeling so much better. The sharp pain going to the legs and back is almost gone. I feel good! My back is still sore but it doesn't make me think about it the whole day. And before it would influence my mood so much. So recently the dr told me to keep on taking the celebrex so my back won't hurt. In the mean time I have started the amoxicilline/clavulaanzuur. My dr was open for trying it out.

    I don't know if any of you have good experience with celebrex, but thought i would let you know about it.

    Hope you all will find something to help with the back pain. Good luck all with the antibiotics. I'll keep on reading about the progress.

    Best regards,

    Annemieke

  • Posted

    Type 1 Modic changes L4/L5 since 2008

    I started 1 week ago on antibiotics 2 x 500mg 3 times af day, I also take D-vitamins plus B vitamins and probiotics and get Low Level Laser Treatment.

    The first 3 days i had loose stomach but it seems to have returned to almost normal after i started to take probiotics 3 hours after the antibiotics.

    I know its early days, but i am full of optimisme and i allready feel slight improvements, if its real or just in my head time will tell.

    I will post my progress here for the next remaining 93 days.

  • Posted

    I've had a successful recovery. I advise spacing the antibiotics apart as much as possible and taking the last as close to bedtime as possible . I took 2 pills 3 times a day. Take them with a food and try to eat food between the two to minimize stomach irritation. Don't exercise and try to not compress the back as much as possible. Antibiotics enter a relaxed disc easier than a compressed one. Laying about is ideal. Lastly, don't get discouraged. It usually takes about week 4-6 before improvement becomes noticeable. Less pain and stiffness. I am in the end of my 8th month and am probably 99%pain free with minor sensation of the L4-L5 area. Hopefully that will continue to diminish.

    Lee

    • Posted

      Thank you for your helpful posts.

      Is it possible to have the link to your website or e-mail.

      Kind Regards,

      Dafydd

  • Posted

    Hi Chris Hansen

    Hope you are doing ok and taking the antibiotics are going fine for you. Can you please let us know what Low level laser treatment you are having? And where do you get it from?

    Many thanks

    Rosary

  • Posted

    HI Rosary

    I am living in Denmark and I get treatment at the Clinic in the town of Odense and for me its going very

    well, the side effects of taking the antibiotics are almost gone so iam happy for that.

    My pain has also gone down after just 10 days on the antibioctics and biostimulating laser,

    I have so far had 3 x 1 hour of laser treatment and i need 1 more.

    I think if you need some more information about laser treatment the best way is to contact the clinic i Odense and I am sure they can send you some more information in English.

  • Posted

    Hi Chris Hansen

    Thanks very much. Thanks for the information-I will try and give them a call.

    That is very good to hear your pain is decreasing. You must be so happy!

    Take care and keep in touch with how your treatment is going.

    Thanks

    Rosary

  • Posted

    Hi,

    I have removed a couple of links from this thread as we do not post links to clinics etc. If users wish to exchange these links please use the private message facility.

    Regards,

    Alan

    Emis Moderator

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