are abx used only for progressive MS or also RRMS?

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

Postby gibbledygook » Tue Apr 01, 2008 10:15 am

Being on the antibiotics for 2.75 years didn't prevent my last two relapses. What wormay work for some doesn't for others.
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Postby notasperfectasyou » Tue Apr 01, 2008 3:33 pm

We have a little community here, the folks who have derived benefit from ABX. We're close and we know we have something everyone else here at TIMS does not. This leaves us in an odd position.

On the one hand we want to tell the world about this fantastic therapy. On the other hand the rest of the world is trained in skepticism. I know, I was there. It's like finding a giant pot of gold in your livingroom and yelling to everyone else in the house and everyone ignores you. They won't come to you because they don't believe you.

You have to go to them.

But, once you leave the room, the perspective changes and it's hard to describe something so incredibly wonderful, "Dang, why won't you come with me and look" you think. It would be so much easier to just show you.

When Kim and I met with Dr. Sriram he said as much. Something like, "If it worked for everyone, we wouldn't be here right now, would we?"

We as the early pioneers need to understand that it's just plain hard for others to do the work that is necessary to see what we see. When we see someone walking with a gate, we understand. When unacclimated folks see someone walking with a gate, first off they call it a limp. Similarly, most MS'er are not acclimated to ABX and our thinking of things.

Knowledge isn't always objective. A lot of knowledge is subjective. A lot of knowledge is dependent on what you have already accepted as knowledge. People often need to be ready for knowledge.

I know, I was there.

I praise Sarah nudging me along. I also recognize that we can't expect everyone else to believe it until Katie has reported in the CBS News. Ken
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Postby MacKintosh » Tue Apr 01, 2008 3:51 pm

I'm holding out for Charlie Gibson myself, Ken. :wink: Would that it could have been Peter Jennings.
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Postby g123 » Tue Apr 01, 2008 5:52 pm

gibbleydigook, i'm sorry to hear that they did not work for you. i hope you are eventually able to find something that does.

are there many stories of both success and failure with the antibiotic protocol on this board?
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Postby gwa » Tue Apr 01, 2008 7:20 pm

I have been doing the abx protocol since the end of August 2007 and to date can tell no difference in my symptoms. It is like the pills contain nothing.

However, I have had MS for almost 36 years, so I may be beyond repair. I have been progressing very slowly downhill for years and see no difference in my condition.

The one noticeable symptom I was hoping the abx might stop was a deterioration in my one good leg which had been getting weaker throughout the years. To date, it is till becoming weaker and if it is not stopped, I will be wheelchair bound within the next few years, which is what I had wanted to avoid.

I decided to try the protocol for a year and am still hoping that I will notice some changes in the next few months. At this point I have no clue as to how long to keep trying the regimen if there are no signs of improvement after a year.

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Postby MacKintosh » Tue Apr 01, 2008 8:19 pm

There are many stories of success and few records of failure. GWA isn't a failure, either. Reawakenings occur in odd fashion, with no linear progress. It's like peeling the layers of an onion. At some point, the outer skin is shed. At another, you get to the sweeter meat. It can vary with each onion, but doesn't make the peeling any more or less effective.

If you have a lot of the bacteria to kill, or you have an unknown co-infection, the effectiveness of the treatment may not be readily apparent. Some of us just won't know til we pass the 'tipping point' of bacterial kill, or discover the unknown co-infectious agent. This is a treatment in its infancy and no one knows all the variables yet.

Oddly enough, just this week on another forum, there is a post of someone (wheelchair bound) doing this regimen 'on faith', as it didn't seem to be working much at all. Well, surprise; now it's 'working'. Over two years on abx, with really aggressive flagyl pulses (nearly forty of them) and a couple of weeks ago, suddenly a command from the brain to move the big toe actually MOVED the big toe. Now, other improvements are coming, including being able to lock the knees and stand again.

There's a lot of disease to kill for some people and for some people the results come slowly, imperceptibly. The longer this thing has had a chance to grow and flourish inside you, the more deeply ingrained it would likely be. Makes sense. Therefore, the longer it will take to kill it all off and also to redevelop new pathways and retrain muscles. I'm still retraining one simple but vexing movement, trying to make good quality clockwise and counterclockwise circles with my feet. That's after two and a half years on abx and feeling I'm 95 to 98% recovered.

I've seen a rule of thumb that recommends one year of antibiotic protocol for every ten years you've been infected with cpn bacteria. I wish I could cite the original source, but it was repeated a few months back by one of the members here. Dr. Stratton is now recommending a standard of three to five years of treatment. What we really need most is a pill that confers patience, extraordinary patience, to get us all through this. :wink:
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 gwa » Thu Apr 03, 2008 7:28 am

Mac,

What we really need is a test that shows that we really have the Cpn bacteria and are not just guessing that we have it.

Another thing that needs to be considered is that two people on this forum have been to Vanderbilt and have posted that both Drs Stratton and Srihan have told them that this protocol does not work for everyone. So to assume that if a person just keeps on taking the antibiotics for a longer time frame and they will work may be misleading.

I think the main thing we need (or I feel that I need) is assurance that I have the bacteria in my system. If I remember correctly, Dr Stratton is working on such a test.

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Postby MacKintosh » Thu Apr 03, 2008 8:14 am

Well, apparently the Mayo Clinic and, of course, Vanderbilt are having good results with their testing methods. A trip to either would net the answer. I wonder if either of them would accept samples sent to them for testing...? Maybe once Vanderbilt is fully up and running again (any minute now) we could check on that.

As far as encouraging people to do abx a little longer, I don't think anyone can judge whether abx is being effective on just a few months' trial. Yes, I do encourage people to keep taking them. Katman's condition declined for many, many months on abx and if she had quit then, who knows where she would be now. Considering the risk/benefit ratio, I'd do abx indefinitely and keep researching co-infections at the same time. But that's just me; I'm very stubborn regarding my health.

Yes, two people here have been to Vanderbilt recently and yes they were told what I posted earlier. A significant subset of patients will be helped. Maybe not every single person, but so many that the Vanderbilt patent was released publicly for humanitarian purposes. If someone won't start this protocol because they're convinced they'll be in that minority who aren't helped, what a shame! If someone quits before seeing benefits, but they would have, again - what a tragedy. Me, I'd rather do this protocol 'too long' than 'not long enough'.
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Postby Loriyas » Thu Apr 03, 2008 8:59 am

I am one of the two who was told by the doc at Vanderbilt that it worked for some and not others. He said that he didn't know why. We didn't get into any discussion about length of time or the exact protocol that others have used. It could be that those patients who failed may not have been on the protocol long enough or did not take the exact antibiotics that we are taking. Who is to know-all one can do is give a try (a very thorough and fair try) and see what happens.
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Postby Anecdote » Thu Apr 03, 2008 9:08 am

GWA, as MacK says, Vanderbilt had the best test results. Also places like Mayo. There are a few more places in the world now using the Vanderbilt primers and getting more accurate results, but as far as I know, when the new Vanderbilt lab is up and running, they won't be offering the test to just anyone because they want to concentrate on research into finding a shorter treatment path for one thing.

I was tested about three weeks after starting treatment, in the best testing place in this country at the time. My antibody levels should have been even higher than at first. I registered only 1:64, not even considered diagnostic by many. Of all the people David has seen on a regular basis, more than seven out of ten show improvement and most of those have not been tested for CPn. It is an arduous treatment and I think the tendency is to give up too soon, hence the results they see at Vanderbilt as well. One reason why they want to concentrate on finding an easier, quicker treatment method............

Sorry g123, you might also have a look here: http://tinyurl.com/223ndk


I thought I had posted this but I must have been mistaken.

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 gwa » Thu Apr 03, 2008 9:29 am

I agree that people should give the protocol a fair try, but another problem is getting the prescription. It is critical that patients have access to the antibiotics, which is a major problem for many of us.

Hopefully, some convincing studies will not be too far way and more people will be able to access the meds. I do not believe that anecdotal evidence is enough to convince most physicians to prescribe the necessary pills.

I answered this thread in the beginning because someone had asked if everyone had positive experiences with the therapy. It seems to me that since there are so few people on the abx that post that we all need to share our experiences, not just those that have had success.

Maybe in another 6 months I will post that I am doing a lot better and am very glad I started the meds. At this point, I am telling the truth when I say that I cannot tell any difference in my symptoms after 6 months.

As far as giving it a try, we drove for two days to get to the doctor that would prescribe the med, so I do believe that I have taken the initiative to test this program for myself.

We are moving in a couple of months and if there isn't a doctor in the Arizona area willing to prescribe (and finding one will be a challenge) then I am going to have to go back to the original physician who will be clear across the country from me.

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Postby gwa » Thu Apr 03, 2008 9:32 am

Sarah,

Do you know if Mayo is prescribing the ABX meds? There is a Mayo Clinic in the Phoenix area where we are moving.

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Faith

Postby notasperfectasyou » Thu Apr 03, 2008 9:45 am

I'm not going to do a whole long post on faith. I've written a lot here at TIMS already.

I'm going to take another perspective. One that's more measurable.

Last year Kim and I spent nearly $4,000 on supplements. I'll estimate that most of this was for Kim, let's say $3,000 or $250 a month. That's $250 a month on stuff we have way less evidence on. It's not hard to flip through the boards here to find all the stuff folks are buying from Vitamin D to fish oil. I'm not knocking those ideas, as many know I've authored a lot of posts expressing positive and negative views on individual supplements.

My point is that if we place all these pills in various tiers – and believe me, I know this is very subjective. In my analysis, spending money on ABX is more likely to help than spending money on curcumin. Now, I very judiciously used the word “subjective”, which I emphasized with “very”. Some folks just might value Vitamin C more than ABX. I was there not very long ago.

ABX is not much unlike taking supplements. It is low risk, potentially high reward and low cost. You can get a month supply of ABX online for less than $200.

So if you can figure out what part of the feeling you have about supplements that drives you to keep buying them. If you can figure out how well grounded is the reason you’re taking the supplements. If you can get your hands around the concept then take a step back away and ask ………. Is the support for ABX better? Are folks on ABX getting better results? If Vitamin D is tier 2, is ABX tier 3 or is it tier 1? I urge you to force your thinking on this. Put all the pills in tiers, where you genuinely thing they belong. Are you spending money on stuff that’s tier 3 or 4 and not on stuff that’s tier 1 and 2? How solidly have you reviewed the documentation on the ABX and supplements?

For me my motto is ….

If you continue to do what you’re already doing, you’ll continue to get what you’ve already got.

Yes, we still buy supplements and I don’t mean to present this as a one or the other choice. I’m just saying, maybe, just maybe, you need to force yourself to measure up the cost and known info about supplements and ABX and see if $60 worth of Rifampin sounds better than $60 worth of Ginkgo. The only thing I would be very careful to add is, don’t create your own ABX protocol. You need to follow one that’s been established, to the letter, all the pills, on the schedule without deviation. The protocol is not a hobby, it is a serious commitment. Ken
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Postby MacKintosh » Thu Apr 03, 2008 3:38 pm

Ken, That's the definition of insanity, right? Continuing to do the same old thing, yet expecting different results? :wink:

Hmm, does that make those who embark on abx sane? (Likely not. :wink: ) My first neuro was pretty certain I'd lost my mind. - Actually, I've regained it.
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Postby daisy » Mon Apr 07, 2008 11:22 am

Will add that my husband started out with one of the basic versions of an antibiotic protocol that others are doing here Doxycycline 100mg twice daily plus azithromycing 250mg MWF and a little Flagyl. Since his disease was more aggressive and issues more pronouced his antibiotic cocktail became a lot more aggressive - then all of the sudden positive change.

If someone tries antibiotics for 6 months and doesnt experience so much as a blip in how they feel in terms of some sort of herx reaction - I would say ramp the protocol up to something more aggressive for six months. Increase the dose of current antibiotics or add in new ones - change some part of the equation to see if a different resultl.

If no reaction at 1 year - one way or the other - maybe it worn't work for that person - but it may well take a more aggressive cocktail. Would be concerned that antibiotics might not work if patient never experiences any sort of herx from more aggressive cocktail.

I do know for my husband - it took a lot of different antibiotics in bigger doses than are normally discussed on this board to have a desirable effect. Not for everyone definitely but worth mentioning for those who don't initially feel any sort of herx effect.
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