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

I forgot to mention I live in UK, and I am under a consultant working for William  Harvey Hospital in Ashford. 

I wish you all the best!

There is a great deal of information on a website by a doctor who took the certification course with Dr. Albert. He reviews MRI's and consults with Doctors in the US for free! There are graphics, a questionnaire and frequently asked questions. Really helpful stuff for both Doctors & Patients alike.

Unfortunately, this forum will not allow a link a very relevant link, and this should not be a free for all link farm, but you can look up necksolutions and Dr. Steve. He does not have a MAST clinic or even prescribe antibiotics, but the info is like sitting through a consult with Dr. Albert.... I've been there.

If you find it, there is a very graphic timeline for treatment & response tha Dr. Albert really promotes. Print it out and put it on your fridge. Very helpful. Careful on the bike.

Great to hear!

How have you tolerated the antibiotics?

Hi, sorry for late reply! very well, I was taking probiotics all the time and had literally very few episodes of of feeling unwell.

It worked for me & have never been happier. I still occasionally suffer from mild sciatic pain but the intense pain I was experiencing around the L4/5 area has totally gone. I am a lot more positive & can't believe this treatment isn't being promoted more. 

I had no side effects & believe if you've been offered the antibiotics you should try them since you have nothing to lose. I noticed the pain reducing after only taking them for 2 weeks. 

Good luck, 

Hi MFT,

I started the 100 days of the double dose of Augmentin (2x625/125 3times/day) in March 2014 after being diagnosed with Modic type 1 changes via MRI. I had some mild diarrhea in the first week or so but that settled down. I did take some probiotics sporadically during the treatment. After the treatment ended I had diarrhea for about 6 weeks straight and was even tested for C. difficile which was negative. The diarrhea went away after taking a yeast based probiotic called Florastor. I should have been taking it before stopping the treatment as yeast is not impacted by antibiotics.

As far as any reduction in back pain, I have not experienced any improvement however:

 - I did not get a biopsy to confirm the presence of anaerobic bacteria in the disc

 - I continued to exercise including some resistance training (I wouldn't think this would completely nullify any positive effects)

 - I suspect that some or all of my bone edema and pain is because my disc is so thin and degenerated and not because of the effects of proprioninc acid emitted by any bacteria.

Despite my gastro-intestinal issues and the lack of any significant improvements, I think that if I had to do it over, based only on the information I had at the time, I would do it again with better attention paid to probiotic/prebiotic supplementation. If I had a biopsy that was negative for bacteria I could have saved myself some hardship and disappointment.

Hope that helps.

Hi Tyson

I found your post very interesting and worth trying !!!

Thanks for sharing. Will definately try this out and let you know. Anything is better than this constant pain!!

 

Hi Tyson,

Interesting. Do you know what Type Modic changes you have in your thoracic spine? Little research, however, Type 2 predominates. For now, there is no indication Type 2 is related to bacteria or responds to antibiotics.

It would seem a bit futile to approach an infection this way. Modic changes related to bacteria propagate in an anaerobic environment. The inoculation would be related to brushing teeth, however, the ongoing effects would not be due to continual re-infection.

I would ask if you have related this to your doctor, and if he/she as well as you would be interested in trying the antibiotic protocol. There are no studies to indicte the efficacy of this, however, there are no studies to indicate otherwise.

From my experience, cervical spine Modic Type 1 changes respond more rapidly to antibiotics than in the lumbar spine. It could be thoracic Modic changes would respond similarly.

Due to the lack of research being done with antibiotics, in favor of more cost intensive/rewarding methods, it is always good to hear these personal experiences.

Let's also try to keep focused on the objective relevance regarding symptoms. We know how painful Modic changes are, especially Modic Type 1. The pain is deep, subject to microfractures, and anyone who has experienced a microfracture know this is scary pain. Microfractures can occur at any time, however, the presentation of Modic pain is worse in the morning, better in the late morning/early afternoon, worse in the late afternoon and much worse at night.

Regarding not brushing and eating soft foods; this is sometimes recommended by spinal surgeons after surgery for a period of time, however, the literature does not indicate rates of re-infection after successfully undergoing the antibiotic protocol.

Research does indicate Modic changes need a year to heal with the antibiotic protocol. This would give the disc a chance to heal, as persistent herniations are related to the Modic changes. Heal the Modic changes, heal the disc.

Thanks for sharing this, Food for thought.... soft food for thought!

Hi mastdoc,

Interesting what you say about there being no indication Type 2 is related to bacteria or responds to antibiotics. I have (or should I say had?) Type 2 Modic Changes. Today marks one year exactly since I started the antibiotic treatment. If I remember correctly, when I asked my consultant about all the original research being done on Type 1 rather than Type 2, he said there was no reason to suppose I wouldn't follow the same healing trajectory as Type 1 patients, and that indeed they had begun treating Type 2 patients with some success (though only a handful at that time).

Obviously with only a simple MRI to demonstrate my results, there was no way of knowing in advance whether my Modic changes were bacterial or structural in nature, but I'm pleased to say, a year later, I have around a 70% improvement in my pain levels, which is life changing for me. I don't expect it to improve much more now a year has passed, but I can live with that. I have started running again and I pretty much have my life back. In fact, I've been painkiller-free since May this year. Before that, I took daily codeine for around 6 years.

Do you think this indicates that the treatment can work for Type 2? I had absolutely no improvement until around 4-5 weeks after I finished taking the antibiotics, incidentally.

Hi Mastdoc,

thank you you for your input. I had a thoracic MRI done in early October where the report simply says mild disc herniations at T10-11 and T11-12 (it does not mention modic changes). However, here's where it gets interesting - that report states "Scout Sagittal T2 images for counting purposes demonstrates small disc herniations at C4-5 and C5-6 with mild central canal stenosis..."

fast forward two months to late November, when I had the cervical MRI follow up. The cervical MRI report does not mention disc herniations (perhaps they healed?) but does state "central noncompressive osteophytic disc ridges at C3-4, C4-5, and C5-6" - from what I understand these are related to modic changes but the report does not state type 1 or 2.

Needless to say my pain has been so bad (I have pain that refers out to my ribs from what feels like the thoracic area, as well as neck and shoulder pain from the cervical area, in addition to the deep back thoracic and cervical pain that follows the morning/afternoon/evening pattern of intensity you outlined above) that I begged my docs for antibiotic treatment. Here in the USA they are not as accepting of the treatment (frankly they thought I was batsh*t crazy!) but finally my PM doc appeased me with a one-week supply of augmentin starting mid November...The day the Augmentin ran out I began substituting with amoxicillin 500mg x 3 and have been on this ever since, and plan to continue this treatment for the full 100 day course (for some reason the augmentin gave me horrible insomnia while the amoxicillin alone does not).

It's interesting you mention that the antibiotic treatment seems to work more quickly on the cervical spine than lumbar...I am about one month into the treatment and would say I have a major reduction in neck pain, and somewhat of a reduction in mid-back pain, compared to where it was before starting the treatment. However, as you know alongside with this treatment I have been abstaining from teeth brushing and hard foods - when I did finally brush on Thursday the intensity of both pains returned but seemed to die down more quickly again, as it is now Monday and there is just soreness as opposed to the crippling/stabbing pain. So, it is tough to distinguish between whether it's the antibiotics or the abstinence of brushing that is responsible for most of my progress, or both...(While I appreciate that the current literature would seem to indicate that infection/re-infection does not continually recur this way - daily brushing - I cannot help but speak from my own experience to the contrary).

Anyway I do sincerely appreciate your feedback. Please let me know if you know of any doctors in the NYC area who are MAST certified or familiar with the MAST protocol (or perhaps even if I am able to electronically transmit my MRIs to your organization for a fee for review), thank you so much.

Hi Charmaine, thank you for writing, no problem! I am only speaking from experience as to what has helped me - I realize the medical literature currently does not accept this as being possible, but then again 20 years ago it would not accept anything we are talking about on this forum as being possible either, so you never know!

Hi JaneMSH,

Absolutely! It is unfortunate that more studies with antibiotics are not being done. Not sure if drug companies and/or medical associations are vying for the lead in treating Modic changes, but Dr. Albert had called for more antibiotic studies in her double blind study publication.

There would be much research that could be done regarding antibiotics in the cervical and thoracic spine, as well as with Type 2, 3 and mixed Modic changes.

I have posted early indicating that my experience indicates cervical Modic changes respond more rapidly than lumbar to antibiotics - Type 1 so far. There is nothing to indicate that the antibiotic protocol is ineffective for Modic Type 2, just no studies done to prove it is effective.

I'm sure we are all NOT going to wait, perhaps years, for the studies; there is reasonable enough clinical reasoning as well as patient suffering to try this with Modic changes of different Type and location.

Great to hear your results, very encouraging.

Actually, they have been treating arthritis with antibiotics for over 50 years.

Interesting note Tyson,

You indicated you have modic changes at C3-4, C4-5, and C5-6. You further indicate you have two herniated thoracic discs.

You mentioned you notice relief of your upper back pain, not cervical spine pain, by not brushing and eating soft foods, relating this to reinfection. However, you have not indicated you have Modic changes in your upper back, only herniations. That is why I asked about what Type Modic changes?

Are you suggesting that, considering the relationship between disc herniations and Modic changes, not brushing and eating soft foods would be a prudent measure after disc herniation. 

Do you think that the thoracic spine herniations are in the early stage of Modic 1 infection, therefore; hypersensitive to any propionic acid bacterial secretion levels, thus amenable to prophylaxis via refraining from brushing and eating soft foods?

Perhaps it would be good advice to incorporate this protocol as soon as possible after any herniation in attempts to prevent Modic changes from developing. Interesting.

Hello Mastdoc,

I'm sorry for the confusion - when I say "upper back" pain I mean the pain that is localized deep within my base of the neck/cervical area, and radiates into my shoulders - this pain is referring from the cervical spine; whereas the "mid back" pain radiates from the middle/thoracic area all the way out to my ribs on either side. (I clarify this a bit more in a previous post that is waiting for moderator approval - I believe because I used a minor expletive when describing my USA doctors' ignorance to antibiotic treatment ).

anyway I think you may be onto something in regards to implementing a protocol of not brushing and eating soft foods during the period immediately following disc herniation...And in my case, even during the beginning stages of modic changes as I experienced a marked spike in pain in both my thoracic (herniated) spine and cervical (modic changes) spine upon resumption of brushing. (Although, please note it may be possible that modic changes are now present in my thoracic as the thoracic MRI was from two months ago).

However as you will read when my 2nd post is unblocked - and this I should have disclosed with my initial post - I too began my antibiotic therapy a month ago, so there is a multifaceted pain reduction approach here (non-brushing, and antibiotics) as the antibiotics are most likely already working...In other words I am not the most ideal test subject as my non-brushing results may be somewhat interfering with the antibiotic results, and vice versa. Yet I am still firmly adamant about the non-brushing as this was not the first time I had attempted this - I had ceased brushing for five days straight just before I began the antibiotic treatment and experienced what I thought to be a significant reduction in pain, only to recur again when I resumed brushing.

 

Tyson, you couldn't be more correct regarding the ignorance of many of the doctors here in the US. Some are downright arrogant. As a doctor who suffers from multi-level Modic 1 changes, I immediately took notice of Dr. Albert's study. The most interesting thing was, while taking her certification course, Dr. Albert began to describe the typical symptoms of her patients suffering from Modic changes and how it affects their lives. I was stunned! She could have been describing me!

 

As a doctor who has treated back pain for many years, neither I or any of my colleagues could provide an answer. Like many, they will say it's all in your head. Well, there is something called centralization; where chronic pain becomes imbedded in neural pathways in the brain. Like a phantom limb; the limb is gone, but you can still experience pain or sensations. So, they will typically prescribe psychotropic type drugs. Needless to say, not effective for Modic changes.

 

Similarly, they will often state "everyone has those kind of MRI findings, it doesn't mean anything". In fact, Dr. Albert went to a radiologist and said, "I have these patients, and they all have these Modic changes. What is that?" She said the radiologist said they were just normal degeneration findings. The radiologist then took down a huge reference book that confirmed what she said. Well, good thing Dr. Albert didn't accept the standard definition.

 

I review MRI's to determine if Modic changes are present and work with patient's doctors across the country to try and help. Most simply refuse, some have been helpful and show interest. I did tell Dr. Albert that I would do what I could to help here in the States.

 

As a patient, specialists I have seen just refuse to have a dialog with me. Last orthopedist recommended epidural injections. I said the literature indicates epidural injections are not effective with Modic changes, the injections must be intradiscal. I was told, "Well I do epidurals". Now, I can't even get an appointment with a specialist like a surgeon. They do not like when the patient knows more than the doctor.

 

Getting to your findings, we don't really know when Modic changes start to produce symptoms. Most assured, it is prior to showing signs on MRI. Problem with recommending prophylaxis regarding brushing is, by the time you usually find out, it's too late. Another problem is that sometimes herniations do not produce any symptoms. Yet another problem is that someone could hurt their back, the doctor says it's just a pulled muscle, but it is really a disc tear or herniation with reactive muscle spasm.

 

Finding Modic changes is not easy. They can only be classified on a low field MRI. Most now are high fields, which will show Modic changes are present, but can't determine what Type. They usually note tem as "reactive endplate changes". Some MRI units will not show them at all. So, they are really machine dependent.

 

The "central noncompressive osteophytic disc ridges" are related to degeneration, which is related to Modic changes, but is not specific for Modic changes. But again, it depends on the machine and the radiologist. I have seen them completely miss it, or just not note it, because they think it's not an important finding.

I personally use a radiologist that can find and Type them better than I. My brother-in-law is a radiologist, he will argue with me, but usually looses. Still, he finds Modic changes to be non-relevant, but won't read the studies. He won't be able to ignore it much longer.

 

The literature is advancing greatly since Dr. Modic in the late 80's. Still along way to go and I always appreciate hearing personal experiences, we have much to learn. You can try Dr. Schottenstein at East 48th Street.

 

All the best!

Hi Jane,

Reading over this forum in detail I noticed that I am in a similar situation that yours, which is the reason that I decided to send you this message. I have modic 2 changes and I am also allergic to penicillin. I am suffering for 4 years now of severe back pain, after 6 years of mild back pain slowly getting worse. You write that your physician decided to give you doxycycline instead of amoxicillin, did he give you a specific reason for the choice of doxycycline, apart from the fact that you could not take amoxicillin because of your allergy for pennicillin? (were other types of antibiotics considered, and if so, what was the reason to choose for amoxicillin​?). I read in your last post that you feel like 70% better due to the treatment, that is indeed a great improvement, which would make me very happy too indeed. I hope things have still been improoving more for you, and, since we have this simmiliarities (modic 2, and allergic to pennicillin) I am curious to know how you have fared further.

My very best wishes,

Irmen

Hi Irmen, apologies for the slow response. I'm happy to report I am still feeling quite well, more than two years after taking this treatment. I would never say that my back was 100% but most days it feels around 80% better than when I was at my worst, which I consider very successful. Most importantly, I have not yet had a major setback, though I still get twinges every now and then, with some pain lasting 1-2 days. I cannot remember now exactly why doxycycline was given, other than just as an alternative to amoxicillin. Perhaps it is one with fewer side effects. I certainly never felt ill while on it, though I did take probiotics alongside. Hope this helps, and sincerely hope you find some relief soon. All the best to you.

Hi Jane,

How great to hear that you continue doing well after two years of te treatment. That gives so much hope. I definitely want to try it too. I have another somewhat technical question for you Jane. Since we are in the same situation, having to take another antibiotic than the one used in the trails, could you specific how much of it you took daily? As far as I remember you explained in your earlier posts, you were treated by the London center, where physicians specialist in the treatment reside (is this true?), and hence I suppose hat they are best placed to calculate the equivalent of the antibiotic you took to the standard one used in the trials and by the others in this forum. Hence, knowing exactly the quantity that you were advised to take daily would be of help for my family physician to know what he needs to prescribe me. Thanks beforehand for the information and I wish you continuing bettership for the years to come. All the best,

Irmen.

Hi Irmen - I have tried to remember the dosage I was given, or find an old packet with the details, but I cannot find anything unfortunately. I *think* it was 100mg in the morning and again in the evening but I can't be absolutely certain I'm afraid. Yes, I was seen at the Broadgate Spine & Joint Clinic in London. Maybe you could speak to them and ask? I'm not sure if the doctor I saw is there any more, but I think Dr Peter Hamyln still works there and I believe he was involved in the original research. Good luck!

Thank you very much Jane for your response. I understand very well that after this time you do not find back with certainty the amount of antibiotics you were prescribed by your physician. The 100 mg in the morning and again in the evening seems to correspond well to the equivalences that are given between the two types of antibiotics -- the one used in the trial test cases and the one you and also me with our allergy have to take as substitute. I will try to get into contact with the Spine & Joint Clinic in London to ask them for certainty. I do not know whether you would find it appropriate that I would try to contact the physician that was seeing you there? (in case you do not want to share this information here in the forum, you can use my personal e-mail address to send it to me, since we are kind of 'same cases', modic II and allergic to the antibiotics of the trial, it would be great to also have direct contact by e-mail in case you would also find this. In case you prefer not, I understand, and I also can try to contact Dr. Peter Hamlyn like you mention). All the best to you, and also best wishes for the New Year, Irmen.

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