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

Hi Rob, best of luck with the AB treatment, I think you are doing the right thing. I did the AB treatment and it had no adverse affect on me in terms of antibiotics. I did not take probiotics or yoghurt a or anything like that to boost my internal system.

I found that after starting the treatment, my back pain went away quickly, but was short term, I think because of a certain euphoric effect. After 6 weeks my back pain had almost disappeared, and I now no longer attend my back specialist, as the pain is 95% gone.

Best to try this route first, before considering surgery. In terms on physio, I found that when I was doing the core strength exercises ( lunges, weights etc) that my back hurt, so I gave up the physio.

Again, best of luck,

Neil

Hi irmen,

See my comment above which was made 6 months ago. I can confirm that I remain free of back pain. I have recently started a 'couch to 5k' jogging program in an attempt to get back in shape. This was inconceivable until recently. However, the jogging seems to be causing some back pain to return, but in a minor way. I am going to continue the jogging routine and hopefully my core will get stronger and relieve the pain. Please take the AB trial, no harm should come of it, and hopefully it will be a success for you as it has been for me.

Very best wishes,

Neil

Thank you for this encouraging reply Neil, I am definitely planning to try it. It is so hopeful to hear how you have fared well with the treatment, and now are even jogging -- this would be an incredible dream coming true, if I only could do some daily walking again. You say in your first text that you had backpain for 30 years, but was this already severe, or still rather manageable? And, if your original backpain was manageable, from when more or less started it to be severe (for example that it got worse as a consequence of physical movement)? I have one more obstacle to figure out with respect to the antibiotic treatment, namely I am allergic to penniciline, and the antibiotic used in the tested treatment is of the penniciline type. I have read over this forum in great detail, and I have seen that Jane is one of the persons on the forum who took another type of antibiotics because she is allergic to penniciline. I will send her a message to see how she has been meanwhile. I hope you remain well and even get better still Neil, strengthening your core and muscles again like you are saying your are doing.

Very best wishes

Irmen

Dear Narelle, I did the 100 day Amoxyclav trial 3 years ago. Best thing I ever did. I am now completely pain free after 10 years unremitting pain with Type 1 Modic changes and four limbic fractures as a result of the infection.  In the U.K. our GP’s prescribe the antibiotics which they were not altogether happy about but my English spinal consultant who handed over the entire trial to Hanne Albert was dogmatic it should happen. If you do the trial stick with it and remember to always eat with the antibiotics otherwise you will feel a bit rotten. I also took acidophilus and saccharomyces boulardii to keep the good bacteria and yeast levels up, the latter also prevents clostridium difficult. Hope this helps.

Thank you very much. Wonderful to hear how successful it was for you. Your information is so helpful. Did you go to Denmark? It does seem to mean that I will need to find a doctor in Australia who will give me the  scripts, which may be difficult. Perhaps Hannah has some contacts here. We will be visiting the UK in September  and possibly Denmark depending on the response I get from Hannah. If I am to have the trial, I may need to find a doctor there who would prescribe them. It seems as though Valley-moon2 had the same problem in the US. I wonder how she is going.

Again, thank you so much, and I wish you all the best.

Narelle

Dear Narelle, I was helped by Mr Alistair Stirling who orchestrated the research on infection of discs and end plates initially and Then handed over the research to Denmark. He put me on the trial. I don’t know if it would be possible but on your visit to the U.K. you could see him privately in Birmingham ( see his contact details via the web). 

He would refer to your home GP to prescribe the antibiotics. If you go to see him you would need an MRI report done within the previous six months and the appended report. He saved me from a multiple spinal fusion for which I cannot repay him. The treatment had me 75% better in 12 weeks and 18 months later I was completely pain free. I had a pain score of 7/10 for many years prior. Wishing you all the best. 

Again, thank you so much. I will certainly look him up in the web perhaps after I hear from Hannah when she receives my MRI CD and report. I will talk to my GP about what I am doing to see if she would consider giving me the medication on  recommendation. Your recovery is amazing!

Very best wishes.

Narelle

Hi again, I have just looked him up and he certainly seems very well qualified. I was delighted to see also that he has done a surgical fellowship in Sydney, Australia, so that if he does think the trial may be suitable for me, it is more likely that my GP would respect his opinion.

Thanks so very much.

Narelle

 

Still no luck! neurosurgeon said I did not have an active infection or I would be "really sick" GP looks at me like I am stupid. I do also have a herniated disc. Did some physical therapy to help with the radiculopathy (I was not able to stand or walk for more than 10 minutes) that has helped with my anterior pelvic tilt and being able to function

but still have pain.

Hi,

I am so sorry to hear you are still in pain and am not sure of your history re whether or not you have had surgery etc. Obviously your neurosurgeon is not familiar with the work done on infection and Modic type 1 changes, so it is probably no use talking to him/her about it...ditto with the GP. Have you considered contacting Dr. H. Albert in Denmark and sending an MRI CD and report? At least if she felt antibiotics would help in your situation, you would have something to present to a doctor in the US. Unfortunately the medical profession are very reluctant to change their whole way of thinking about a particular condition and the research re the use of antibiotics for Modic changes associated with herniated discs is still ongoing, so it is unlikely that many doctors are up with it. It is far from being an accepted treatment yet, and of course it may not be suitable for you, but you need to get someone who knows about it to let you  know. I am waiting for a response from Hanne Albert re my neck. I have been tracking my CD and it has just been delivered to her address in Odense, Denmark. If she says 'no', antibiotics will not help me, I will be very disappointed. I'm  not sure I am supposed to give her email  on this site but if you do a search for Modic clinic, Odense, you should find it.

Hope this helps.

Narelle

There is an MRI sign called a  Diffusion weighted Claw sign that differentiates between infection and mechanical degeneration. Proprionibacterium acne’s is a low virulence infection that is not picked up in blood tests...So you need to ask for that to be reported when you have an MRI. Other than that a biopsy of the disc/end plate area. Most surgeons are reluctant  to do this. You may have to pay privately for a new MRI to elucidate the infection. Still large numbers of health professionals don’t recognise any of it. Spinal discitis  with staphylococcal infections do make patients very ill and they can end up in hospital for three months... MAST medical is a group of people with an interest in the condition , look them up on the internet, you may find someone near you who can help. 

Hi, Miss 93889, this is a very useful information abt the differentiation between infectious and mechanical disc degeneration  . I believe all GPs/surgeons  will rather treat all back problems as mechanical . Thanks and I will definitely  tell my MRI doctor to watch out for that , rather than just telling me these white patches are causing the pain. 

BTW,  I am more & less recovered from my MC T2 with the 100 days MAST which I managed to convince my company GP to try it out  with weekly visits ( he can’t give me 100 at one go). Simply put, it was a lonely and painful journey except I read up this chat group sometimes to draw mental support  though there aren’t  many T2 patients here.  Here, I want to give some hopes to T2 patients that the MAST does help if the disc is caused by infection.  I also believe that, If the disc is mechanical degenerated , sooner or later, it will be infected due to our current living environment. 

Important thing for future maintenance is to take probiotics to block bacteria , for prevention . Do stretching to maintain joint  flexibilities and keep the muscle warm ( bacteria is afraid of warm ) . I do weekly massage and monthly physiotherapy too.  I took joint supplement now with a hope to grow my missing bone marrow. If it sounds like  a lot of monies, yes, but freedom to move around meant a lot to me. Luckily, my company pays for some of my treatment costs. BTW, I am 54, from Singapore and very active in sports .  Good luck everyone and hope you will free from the pain soon. 

Really pleased to hear you had the treatment and hopefully you are well on your way to recovery.  

I could add that I also changed to a low sugar/low carbohydrate diet to lower the histamine levels in my system and stop feeding the bad bacteria. It is known as the Stone Age diet, as advocated by Dr Sarah Myhill.  Pain sensitivity is heightened by raised histamine levels so it is in our power to control chronic pain through diet too. 

Hi, Thanks for your advice on the choice of diet and certainly I will research that too.   I won’t say it is totally painless there as I have mechanical disc degeneration in the first place . Like to add that sometimes I was asked to take the same antibiotics for other illness for just 1 week and I notice an instant  relief on my back too.  I totally stand by the theory that the same bacteria will continue to invade there and we need to fight it with all we can , as long as we want to free from this severe pain. I definitely don’t want to go to T3 condition . 

Hi miss93889,

Well I have had a response from Hanne. She has looked at my MRI CD and believes I have Modic changes in two cervical areas graded at 3+3 and 3+4 respectively. I am not familiar with the grading levels so I don't really know the significance of those figures. She also said that these changes are clearly caused by a bacterial infection and suggested  antibiotic treatment. Her interpretation of the MRI differed a little from the one I was given here  which makes it a bit difficult to make a decision.  As I don't think there is much on offer in Australia in this way I will probably include a trip to Denmark in our upcoming holiday. She said I would need to stay there for 4 days. The first day I would be at the clinic for 4-5 hours  including a laser treatment, and I would have 3 other such treatments on the other days. Apparently if I can't find a  doctor here to give me the AB, there is one there who I could see. 

I would like to see the doctor you mentioned in Birmingham too re making the decision re Denmark, but with travel arrangements, I will really need to decide before we leave here.  I know nothing about the laser but will do some research. She said I would be followed up for 2 years though I'm not sure what form that would be in as we are so far away.

I will let you know how it goes.

Narelle

Good luck Narelle. I would stick with Hanne Albert I expect the follow up is likely to be pain scoring over time, so being at a distance would not be a disadvantage. There is also face time so you could connect in that way too. Grade 3 to 4 suggests the Modic changes have been there a long time . I was treated with grade 1 which is when the trabecular bone is beginning to break down and turn to a gel consistency. 

Stick with it, taking long term antibiotics is not always easy . 

Hope to hear you’re improving soon. 

Thanks so much again. I am now waiting to hear if the dates I can go suit her.

Did you have the laser?

Actually I have stopped medication to see how my neck was and it seems better than before, but I am basically sitting around and working on the computer.

Kind Regards,

Narelle

Hi! I am so happy that I found this forum. I am from Switzerland and am suffering with modic 1/2 since 2014/15. Told that is nothing wrong just will get better in future. I was sporty my whole life, now I can not move normally. My doctor says I could go jogging, there is nothing in my back that could break! I did not even get strong painkillers. A nightmare! Finally I met a doctor in Germany who talked about MAST. But he sayed he would not recommend this therapy. I sent my MRI to Odense and was told to be a candidate for MAST, my modic changes showes very clearely a bacterial background (I had a tooth root fractur - very long time not discovered - painful just after years). So after that everything is so logical for me, that DR Albert is right. I will go to the MAST CLINIC and have to fly in, but I wish to get my normal live back. Nobody in my invirement understands this nightmare of constant pain, the cramps, the feeling of this nasty feeling of constant inflamations in the back. I hope this treatment will work for me, even when my modic changes are massiv in volume (3-4/4). I will back here after my visite in the MAST clinic to share my experiences. THANK YOU!

Hi,

I do hope your treatment with the Modic Clinic in Odense was successful and that much of your pain has gone.

My problems were in the cervical spine and Hanna had rated them 3 +3 and 3+4. In October last year I went to Odense and was delighted to finally meet Hanna at her clinic. She spent hours explaining her ideas and research in relation to my MRI. It all made so much sense. Then I had 4 x 1 hour laser treatments after which my neck pain had reduced and movement had increased. As I couldn't find a doctor here in Queensland, Australia who was prepared to give me the antibiotics, I saw a doctor at her clinic and got the medication at a local pharmacy there. She is using just amoxocillan now as it is more easily tolerated and appears to be as affective as the augmentin. The dose was 100gms x 3 per day for 100 days. Throughout I took probiotics and other things that Hanna suggested and basically had no tolerance problems. Because the antibiotics are absorbed in the discs much better when you are horizontal, the regime also requires that you lie flat for half an hour x 5 times/day at particular times to suit when the each dose is taken. I was able to stick to this most days but it may be difficult if you were working full time. My course of medication finished in early Feb this year and I really am feeling so much better. I am careful to be gentle with my neck, but it is so wonderful to be off antiflammatories and panadol etc., not to have to endure horrible daily headaches and general pains in my head, and to be able to lay with the back of my head on the pillow without pain. I had stopped all physio on my neck and associated exercises before I went to Denmark. It was just making me worse.

My neck will never be perfect because I have congenital fusion with some vertibrae, but I am delighted with the improvement.

Again I hope you have similar success.

Kind Regards,

Narelle.

I have posted a description of my positive experiences in Odense above and wont repeat it here. However, I don't know if you are still monitering this forum, but if so, I want to thank you so much for encouraging me to get treatment from Hanna. It is now over 3 months since I have completed the antibiotics and I really am very pleased with the results. The laser treatment I had at the Modic Clinic really helped too.

So thanks again, and I hope your improvement has maintained.

Narelle

Thats a great outcome. After 10 years of unremitting back pain and then receiving the antibiotic treatment I can confidently say it was the very best thing I did. I now have no pain at all which is unbelievable considering my MRI showed I had the spine of a 98 year old. I wish you all the best X

hi

i wonder if you can tell me which prob iotics are used and when to take them and also when you lie down 5 times a day and how thats timed with antibiotics three times a day? Im trying to find a uk dr that will prescribe as not able to go to odense at the moment although the opinion from dr albert was that i would need treatment. also i dont know what the excercise restrictions are during treatmennt.

IF you have been diagnosed with infective Modic changes you can go to Mr Alistair Stirling privately in Birmingham (details on internet). No local GP's will sanction antibiotics without a consultants recommendation.

I used Lactobacillus rhamnosus and Saccharomyces Boulardii two hours after morning dose Amoxyclav 500 mg. I did not restrict exercise, I have 6 horses to look after single handed. Good luck.