are abx used only for progressive MS or also RRMS?

A forum for the discussion of antibiotics as a potential therapy for MS

are abx used only for progressive MS or also RRMS?

Postby g123 » Thu Mar 27, 2008 9:03 pm

I've seen more references to the use of antibiotics for progressive MS and was wondering if this is a treatment that is also used for RRMS?
Last edited by g123 on Wed Aug 05, 2009 11:11 am, edited 1 time in total.
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Postby SarahLonglands » Fri Mar 28, 2008 4:11 am

Hello back,

You only see more references to abx use for progressive disease because people are getting desperate if and when their disease turns progressive. There are more options in the earlier stages of the disease and most neurologists prefer to stick with what they know, which is that MS is an autoimmune disease and nothing can be done but slow progression. The antibiotics listed here, and in the Regimens section are fully capable of stopping the disease if used correctly and work more quickly in the early RRMS stage of the disease.

It is the pathogen which can become resistant to certain antibiotics, not you yourself and having used doxycycline or minocycline previously for acne does not rule out their use.

Sarah
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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Postby g123 » Fri Mar 28, 2008 5:07 pm

Hi, thanks for responding.

Re: the antibiotics for acne, I've taken minocycline for it in the past & recently started on very low dose doxy... good to hear it doesnt rule out treating MS with them, but is there any reason I should stop in the meantime?

Okay, I think I have a lot of reading to do... anyone have any suggestions as to where to start?
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Postby Rudi » Fri Mar 28, 2008 5:36 pm

1st traceable symptoms July 2006 - realized I had MS November 2006
CAP since 27/04/2007. Various supplements and dietary modifications.
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Postby SarahLonglands » Sat Mar 29, 2008 5:10 am

G123, why are you taking very low dose doxycycline, and how low? Less than 100 mg a day is not a good idea for anyone at the age of puberty and above. Luckily doxycycline is not one of the easiest abx for a pathogen to develop resistance to, but clinical doses are decided for a reason.

Sarah
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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Postby g123 » Sat Mar 29, 2008 12:30 pm

i take it for acne & rosacea. it's low enough to be "submicrobial" and works through reducing inflammation. it's 40mg (30 immediate & 10 time release).

the brand name is oracea, it's similar to periostat, which is used for gum diseases. it's something dermatologists frequently prescribe, but while having clear skin is important to me, it's obviously not my first concern which is why i asked.


http://www.ncbi.nlm.nih.gov/pubmed/18004018
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Postby SarahLonglands » Sat Mar 29, 2008 3:21 pm

Oh, I see! You might care to look up someone called "Red" on http://www.CPn Help.org. He is treating his rosacea very successfully with CAP antibiotics.

Sarah
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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Postby MacKintosh » Sat Mar 29, 2008 3:45 pm

I, for one, am glad to hear you're seeing more and more references to antibiotics. It's about time the world starts to pay attention to something that actually attacks the cause of MS, rather than continuing to treat the awful results of MS.

David Wheldon's website is a great place to start. It's digestible and mostly understandable to the lay person. You can start by ignoring the cites and studies and just read through it for the basic information. Then, when you grasp the basics, you can follow the research links and do more homework.

Does this protocol work? Well, I started it less than two months after I was diagnosed with MS. I was diagnosed in August of 2005 and refused to be a Copaxone pincushion. From 06 October 2005 til I saw a big 'name' neuro in January 2006, I was on antibiotics. He said he couldn't even diagnose MS at that point, as my symptoms were gone. In the two and a half years since I started, I've had no exacerbations and no MS progression. Quite the opposite. Brain fog is gone, I have better short term memory than I've had in many years, reasoning and problem-solving ability has returned and, yes, my feet do exactly what my brain tells them to do (something that was rapidly and frighteningly declining in August of 2005. (I'm fine and getting finer, if that's possible!)

P.S. I just re-read your original post and see your meaning was directed at seeing more posts relative to progressive MS as opposed to relapsing-remitting. I think you'll see that change over time. As Sarah said, most people have spent YEARS looking for an answer, so the progressive folks were the first to dive into antibiotic treatment. I (and now you) benefitted from those pioneers and have the luxury to treat it at the very beginning and forestall the awful downward slide that others have had to endure. A very cool thing.
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Re: are abx used only for progressive MS or also for RRMS?

Postby NHE » Sat Mar 29, 2008 10:02 pm

Something to consider...

Relapse remitting. That's how my MS is described. To me, relapse remitting means that there's a period when disease activity is prevalent followed by a period when it is not. Looking back at my own course through the quagmire of MS, that's exactly how I would describe my path. I had what I believe were my first MS symptoms approximately eight years before I was diagnosed. My initial symptoms consisted of numbness in my right shoulder that traveled down my arm to my thumb and forefinger. This numbness stuck around for a period of about a month. I saw several doctors at that time including a neurologist. Whether MS was suspected at that time I will never know as no one ever mentioned it to me.

After these initial symptoms subsided, I had no neurological problems for the next eight years. None. I would have certainly fit into the description used by MacKintosh's doctor in that MS was undiagnosable.

In retrospect, had I actually been diagnosed with MS after that first attack and been told to take some treatment believed to be therapeutic for MS, then I believe that it would have been reasonable for me, as well as a doctor, to assume that such treatment was actually helping me. In contrast, I was fine for eight years without any treatment and completely unaware that I might have MS.

That's the problem with a relapse remitting disease such as MS. I could have been doing anything for those eight years and it might have been reasonable for me to conclude that it was helping my MS but, instead, it was just the natural course of the disease. That's why phase II and phase III trials typically include hundreds of patients. A sample size of just one person, while perhaps interesting, is inconclusive and cannot be relied upon as a statement for the efficacy of any particular treatment. Data from a large population of patients needs to be examined in order to average out the relapse remitting nature of the disease and show whether or not a treatment may actually be effective.

I realize that it might be relatively easy for many using the antibiotic protocol to treat MS to take my words in the wrong way. Please do not misinterpret them. I am grateful to hear of people like MacKintosh who are doing better. I also understand that there are many potentially therapeutic agents which have yet to be examined in a clinical trial. Nor does it seem likely that many of these agents, e.g., antibiotics, will ever see a trial since there is little to no motivation on the part of drug company to pay for an expensive trial on compounds for which generics already exist on the market. However, given the relapse remitting nature of MS, it might be the case that some of the remarkable improvements seen by people on antibiotics, or some other agent, might have occurred independently of any treatment.

...again, it's something to consider.

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Postby MacKintosh » Sat Mar 29, 2008 10:38 pm

It HAS been considered. And, after studying chlamydia pneumoniae, its ramifications and its treatment for the past two and a half years, it has been set aside.

I truly am weary of those who simply can't see the forest or the trees.

We have had this conversation many times in the past. I choose not to be trivialized and will not participate in it again. There is no longer ONE 'anecdote', there are many. Too many to be dismissed.
The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi
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Postby SarahLonglands » Sun Mar 30, 2008 5:57 am

NHE, what you say is very true: my first realapse when I was 24 cleared up completely in less than a month. Nothing more followed until I was 27. That then cleared up completely, and so on and so forth. In my thirties I noticed less total remission and the relapses came closer together. Then, when I had hit my forties, I was had become SPMS but still with the occasional relapse. 44, my progression was going downhill so fast that the neurologist told David to make arrangements for me and there was no chance of me painting again. A few weeks down the line, I was started, unwillingly, on doxycycline, 200 mg a day, the other antibiotics a little later. Apart from the odd bump, I have done nothing but improve since, even in the 9 months since I finished the treatment.

I decided to call myself "Anecdote" somewhat ironically, but its quite funny the number of people who have recently referred to me as "Antidote." :wink:

Sarah
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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Re: are abx used only for progressive MS or also RRMS?

Postby NHE » Mon Mar 31, 2008 5:22 pm

McKintosh wrote:We have had this conversation many times in the past. I choose not to be trivialized and will not participate in it again.

I wasn't trying to trivialize anyone's experience. I have been on Avonex for the last 7½ years and I feel the same way about Avonex. For example, when I was at my doctor's office the last time getting my Avonex prescription refilled, she asked me if I felt that Avonex was helping me. I told her that I really don't know. A look of surprise came across her face and I explained that I didn't think it would possible for anyone with relapse remitting MS to know with absolute certainty if some medication was helping them. All I know is that I have not had a major relapse since my initial diagnosis in the Fall of 1999. However, I don't know if this time period free from a major relapse is due to the Avonex and other supplements that I take or if it's just a part of the natural course of the relapse remitting diseas. That doesn't mean life is great for me, far from it. I have experienced a slow gradual loss of my physical abilities. Sometimes I wonder if this is attributable solely to MS or if it's a combination of my increased levels of inactivity as well as MS. It seems that I'm on this vicious cycle of MS makes it harder to do things, therefore I do less, therefore it's even harder to do things since my body has become deconditioned.

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Postby g123 » Mon Mar 31, 2008 7:49 pm

Rudi, thanks for the links to more info. I have lots of reading to do as soon as I can get out from under a big pile of work.

NHE, I agree that the relapsing/remitting nature of the disease can make it hard to tell what's working or not. Like McKintosh I had a full recovery & no symptoms in the 3 years after my first attack (ON), and i've followed a diet in that time. The diet could have prevented other relapses, but maybe i wouldn't have had another attack in that time anyway. Now, I have new symptoms. they are not bad, but it's upsetting because I had hoped it was a CIS, and hoped that i'd be able to prevent a 2nd attack through the diet. i still haven't gone back to the Dr for a diagnosis, and I'm not sure that I'm ready to yet, but ON + MRI + three new symptoms-- i know.

It's unfortunate that there is no money to fund clinical trials for drugs with available generics. hopefully there will more and better ways for patients to log their experiences with these drugs in a chartable way, so patterns can be more readily identified. it is so important and valuable that sarah and mckintosh and other "trail blazers" share their stories, even if they are not statistically significant...yet. thank you to both of you!

in the meantime, anything is a calculated risk-- the interferons, antibiotics, doing nothing. after my CIS i chose diet because there was no risk of side effects & a potential benefit. now, i'm looking for something more aggressive, and am interested in learning more about antibiotics.

i do believe that antibiotics have made a huge difference for some with MS. i don't think all of these stories can be chalked up to coincidence and/or the relapsing/remitting nature of the disease. but as inspiring and uplifting as Sarah's story is, and as badly as I want to believe that abx are a magic bullet, I am aware that what works for one person, might not work for all people with this disease. this decision would be easier if there were large scale trials, but the way i'm looking at it now, if i'm possibly one of those people that antibiotics could help, then not taking them might be the greater risk. especially as i've made the decision not to take interferons.

right now i'm going to read as much as i can and start on the recommended supplements. nice to meet all of you :)
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Re: are abx used only for progressive MS or also RRMS?

Postby g123 » Mon Mar 31, 2008 7:54 pm

NHE wrote: Sometimes I wonder if this is attributable solely to MS or if it's a combination of my increased levels of inactivity as well as MS. It seems that I'm on this vicious cycle of MS makes it harder to do things, therefore I do less, therefore it's even harder to do things since my body has become deconditioned.

NHE


I agree that might not be an either/or. While "use it or lose it" is true for anyone to a certain degree, the more i read about plasticity, etc. the more I think it is even more true for people with MS. on that note, maybe i'll start exercising tomorrow :roll:
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Postby MacKintosh » Mon Mar 31, 2008 11:28 pm

g123 - Welcome to what can be the 'ever-growing learning experience'. If you haven't read David Wheldon's site, that's the best place to start. The explanation of the science and the treatment was so clear, even my heavy brain fog didn't keep me from understanding it back in 2005. If you read the Vanderbilt patent information, which they released freely for humanitarian purposes due to the high rate of success of the protocol, you'll get a more serious insight into the mechanics of the bacteria, its several life-stages and why it's so hard to detect and to kill. They do say a 'subset' of MS patients will be helped by this. Elsewhere, you will find references to a 'considerable subset'. (Even though researchers believe most will be helped, they just can't say 'all' or 'most' categorically or their research-hat will be handed to them as they walk out the door.)

Getting on the supps (sorry for hijacking the original thread) is the best way to start. It will get you in the best possible place for when you're ready to start antibiotic therapy.

If you read my posts from mid to late 2005, you'll see the search and learning curve I went through to get to where I am today. The basic notion to wrap your head around, after setting aside the notion that your autoimmune system one day just decided to start chewing on your brain for no good reason is, chlamydia pneumoniae infection is the underlying cause of a variety of 'name' autoimmune diseases, which manifest themselves differently in different people.

The difference between chlamydia pneumoniae manifesting itself as MS versus chronic fatigue may be genetic, may be the result of a weakened blood/brain barrier or may be the result of another co-infection. The difference between it becoming MS or irritable bowel disease or rheumatoid arthritis could simply be bad luck. Cpn has been implicated in all of these 'name' diseases and more and more studies are showing this monthly. There is SO much more information available now than when I started this, and I started long after Sarah, LifeontheIce and Katman did. Imagine the faith that they had to rely on!
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