I wanted this thread to be about PPS vs SPMS rather than abx but Cheer asked if I still am of the same mind I was in a thread two years ago in which the idea that MS might be caused by CPn was discussed.
I still believe the theory that MS is possibly caused by a cryptic bacteria is perfectly plausible. It is clear that many people have had good success using that approach, others, like me, continued to progress in terms of motor function.
The problem is that it is possible antibiotics were working fine for me in this context: If MS is caused by a cryptic bacteria, then when the inactive non metabolizing bacteria is finally killed by abx, the cell that it lived in will die. This could result in deteriorating function; it depends on which cell was impacted.
Of course, the biggest problem with using antibiotics for MS is that we do not have a proven hypothesis, we do not have indusputable pictures of CPn in the microglia adjacent to MS lesions (this is difficult to get so not surprising) and while researchers in many places have found evidence of CPn in MS brains, not all people looking for it have found it. So it remains a possibility but not a proven theory.
If you decide to use a therapy like the VU abx protocol for MS, you can do it under only one possible gauge for success: empirical treatment; in other words, does it help me.
In my case, I have no expanded lesions, no new lesions, no atrophy and completely stable MRI findings with no enhancement comparing a new MRI with the one at start of abx 3 years ago. I have a black hole in the middle of the largest lesion which I had when I began antibiotics. It is probably that area that is responsible for the motor problems.
I also have enjoyed much better physical comfort in that abx result in reduced spasms for me, which in my world is a big deal. I also have more energy and less "brain fog", which is that sense that you are kind of outside looking in and far away from life and getting further every day--a slippng away feeling. That's gone too. I really feel a lot better on abx overall.
But the progression poses a dilemma for me. It can't prove or disprove the CPn/cryptic bacteria hypothesis for MS, but if you continue to have motor losses, what do you do? What do I do?
My neuro, who BTW said the abx are simply antiinflammatory (he is not the prescribing physician for that), said I have stable MS but the losses I have experienced are simply this PPS type event which is why I started this thread. I wanted to know if others had heard this.
Of course, if he is right that SPMS is the same mechanism as PPS, then it is enitrely possible that abx worked fine and stopped MS in its tracks, but the SPMS phase will continue unabated because it is a totally different mechanism for motor losses. If he is correct SPMS will be a tough nut to crack.
Just for grins, I will mention that the neuro said to me:
"well tysabri is the only thing we might consider but you really have no inflammation and it is not typically effective in that situation."
I suggested revimmune because it kills peripheral immune cells (and CPn lives in peripheral immune cells and EBV lives in b-cells so two vecters for infection could potentially be eliminated with that approach) and because the people posting on that forum are saying it is very effective.
he said "That is a bad idea, I'd be concerned about bladder cancer 10 years down the road or other cancer or problems. If you get any worse we will do tysabri"
I said I thought you said it will not help considering the lack of inflammation...
he said "well we can try it and see, it might help....if you get any worse or seem to be slipping." (I'm about an EDSS 6 BTW-not a lot of 'worse' to go)
It MIGHT help. OK so that is advice from a neurologist who is recently here on his own as a local MD from an MS clinic in the nearby large city. He is no dummy and is very up on all the research and clearly can rattle off rapid fire the most recent findings with stunning accuracy and recall.
But do you see the conundrum? Why is my "unproven approach" stupid and his (application of an approved drug for a known ineffective application) a smart and acceptible move?
In Sarah's post above, she linked a quote from a research paper on campath showing that SPMS patients got worse on that drug in spite of no lesion formation. Since tysabri like campath has considerable side effects, is the risk vs reward ratio in my favor if I do his approach?
Since abx really have no serious side effects, how about the risk/reward for that idea? I already know they help me in some areas....
I wish we had more data to go on with regards to the idea that cryptic bacteria are at the heart of MS. If we had more generally accepted data supporting the idea of cryptic bacteria, we would just accept that the motor losses are part of the process and go on.
In my personal situation I need to decide what strategy to try to apply at this point and the mixed results I have had with abx- both some things better and some motor losses -make it hard to know what to do. As it is, I am still on abx (and copaxone BTW-for 11 years).
There are no approved therapies for SPMS unless you try novantrone and I do not want to do that because its results are again related to inflammation and it has cardiotoxicity-my family history suggests this is not probably a good route for me and my neuro actually has had all 4 patients he ever prescribed it to get that complication and 3 of them had no results from the drug as far as MS goes.
That's not what the marketing department of the drug tell you and it is not what we want to hear but it was his experience and he will not prescribe it.
At any rate I hope that answers Cheer's question. Honestly if I had not done abx and there was another person on this board like me who had posted about it, I'd want to know what happened at the 3 year point too, so maybe this diversion was worthwhile to discuss.
Brock, if I could go back in time to my "3 years post diagnosis self" this is what I would say: You will be fine for a long time (I could still jog and did 3 times a week right up to 6 years post diagnosis--I still jogged but sporadically after that, because we moved, for probably another 3 years) Take the best care of yourself that you can in terms of nutrition and health otherwise and also LIVE! Do fun stuff and enjoy every second of your life. Get exercise as possible (this is good for neurotropic factors) and be as strong and flexible as you can physically. Nurture every person in your life and hold them dear, including yourself. Focus on the things you are grateful for and stop obsessing about what might happen because it might not.
I would also loosen up a little moola
for a cruise when I was still more mobile. It sounds not too fun now, but I wanted to see the glaciers in Alaska once.
Please believe you will be flexible enough and resourceful enough to cope with whatever you have to as it comes along. ANd be kindof lucky feeling in that there is a lot of good stuff coming along even as you read this. I got sick in '91. That was a LOOOOONG time ago! If you are as I was, 15 years from now you'll still be a walking functioning person, even if you use a cane as I do. But I assume we'll get more information long before then. If nothing else stem cells are coming pretty soon as well as other regenerative strategies for nerves...
At any rate that is the long drawn out
expanation of Cheer's question.
I hope anyone else who has thoughts about the PPS vs SPMS question posts their understanding.......