Marie's abx log

Tell us what you are using to treat your MS-- and how you are doing.

Postby Ilovetrees » Thu Jul 05, 2007 1:18 pm

Marie,
Mine have gotten so bad that I could barely move without a huge cramp, so painful I could barely stand it, and then painful for two days after. (Not as bad as the cramp itself, thank goodness. But, those cramps last about 20 minutes!) And, any muscle in my legs or feet will get them. I didn't know I had muscles in some of the places I've had the cramps.

I'm on Baclofen, but it's causing severe edema in my ankles and feet, so much that I can't get my shoes on, and it seems to be increasing. They suggested I reduce the Baclofen and start taking Zanaflex too. I did that yesterday, but the edema is even worse today. I looked it up and it appears that Zanaflex is even worse than Baclofen for causing edema! Now I'm at a loss, other than just to try and reduce the Baclofen.
Carol
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Postby mrhodes40 » Thu Jul 05, 2007 5:20 pm

Gosh Carol,
I have never had a single spasm last for 20 minutes that is odd. that almost sounds like tetany, did your doc check for calcium levels too?

Mine start with a kind of feeling that it is going to go in a minute, then one leg will pull up uncontrollably as if to march. My back muscles will do it also and that causes a severe arching of my back. I do not have anything resembling flexor spasms in my arms. but in my legs and back it is a very obvious spastic movement . Here's the wierd thing, I cannot voluntarily "march" the same way the muscles move in spasm! The muscles are too weak! But that leg will pull up that way and if I am on my stomach when it happens my whole body will raise off the bed as that leg forces its way up. It will stay up for about 3 seconds then relax again. It will repeat this every 5 seconds or so. It makes me insane. Restless legs, by contrast, is an intense desire to move the legs which is a much faster almost jerking thing versus that more slow drawing contraction of the muscle. As I said, sometimes my muscles actually strain themselves in the effort and hurt for days until they heal. It is a nervous system thing.

I do not know if I everyone who does antibiotics would have their spasms get better, but I do know mine have done and it is really worth it to me to have that gone. It has not been linear though, it has been up and down, as I mentioned.
good luck!
marie
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Postby Ilovetrees » Thu Jul 05, 2007 6:50 pm

Marie,
That sounds very different from what I get. This is more like Charlie Horses, but in various muscles, mainly in my legs and feet.

You're correct, I've thought tetany too, because I get that kind of feeling, like all the muscles are really tight all over my body, and sometimes it even causes the sides of my mouth to pull down. My calcium has been checked, but it's always normal. I've read, though, that you can have normal serum calcium and still have a calcium deficiency, because the body will even pull calcium out of your bones, if it has to, to keep the proper level in your blood stream, and leave you without enough for muscles etc.

Even my Neuro doesn't quite understand it, because it's not like 'normal' MS spasticity. I don't have any jerking etc. Two of my doctors are running various tests, but we've been through this before

Thanks for the information. I have yet to run into anyone with MS who has this same muscular problem, but I keep asking when I see posts like yours.
Carol
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Postby mrhodes40 » Sun Jul 15, 2007 7:11 am

HI Carol,
Yes I agree it is odd sounding and different. I am an RN also and have seen many people in the end stages of MS as well with severe flexor spasms, their spasms are like mine and the muscles even pull up in characteristic ways like that marching motion I mentioned it is not random. I am glad your neuro is recognizing that it is different and investigating it more. I hope you find a solution to it soon!
Good luck!
marie
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Postby mrhodes40 » Sun Jul 15, 2007 8:54 am

A addendum on the subject of being better or not

The fact of the matter is that empirical treatment is easy if you have your drop foot go away or something like that, but if motor function does not change in an unequivocal way it is hard to quantify. For example Rica was using a walker and a trike to get around and now climbs ladders to do roof repairs. That is unequivocal, she is a whole lot better, but it is not as clear for some of us in that same way.

I am much better overall even though my foot drop is essentially the same. I so wanted the foot drop to go away! I guess I am going to need some kind of stem cells or something for that symptom

But those spasms were terrible and it is great when they are gone. No matter what else happens I know the antibiotics are impacting that symptom even though it is not linear.

I asked my husband the other day. I said "Well, do you think I am any better? I mean, my leg is still really weak and I expected that to get better What do you think?" He said 'You are vastly better. I agree your leg is a problem but you are "you" again. You were so out of it before, sort of far away and you had no energy. I would have said kind of depressed. You are doing normal days and seem normal at the end of them too. Your leg is not that much better, but there's more to think about than just your leg" I said do you think my leg is any worse at all? He said no, but I think you need to work out more and not try to do so much. (I have gotten much more involved in things and am busy-he laments that I do not work out as much as he thinks I should)
Now my husband is an engineer, not given to flights of fancy or overstating anything, ever. He is a precise and cautious kind of person. His unequivocal response was valuable for me. I wanted to document it on my thread.
My sister says the same thing but she is more given to effusive support.
My mother says the same thing but reluctantly as she does not want to engender "false hope". (God forbid someone with MS has hope.)
My 27 year old daughter says the same thing and gets mad if I ask her if she would tell the truth if I was worse saying of course she would. I do things with her and the kids now like walk with my cane to several stores at the mall without that numbing fatigue that used to force me back to the car.

You see, for the person in treatment it is harder to assess. I tend to keep focusing on my drop foot as if that is the only thing that matters.

And on another front my hand is really good. I can type with two hands for long periods of time and not have my weaker hand become an issue. It used to be true that half an hour was about it for that. Then I'd have to hunt and peck with my good hand and take the weak one off the keyboard because it was useless and tapping wrong things. It has been many months since I had to do the bills in several stages because my hand could not hold a pen any longer. I had actually FORGOTTEN that used to be a symptom of mine.

Do I think antibiotics work? I'd say that they have worked for me even though I still use a cane. But I would want to caution people that it may not be true that they have a straightforward course with symptoms regressing in an orderly fashion, and it may be that some of the more long lasting motor symptoms do not go away.

I will stay on antibiotics unless there is a clear loss of funciton or an exacerbation of some kind that tells me I am on the wrong path. Until then I am very happy with this approach.

And I tentatively hope (there I go again with the hope!) that using the tinizadole continuously results in new gains. I will post about that in 6 months or so....
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Postby gibbledygook » Mon Jul 16, 2007 11:15 am

Good luck with continuous Marie! I've managed about 65 days of continuous with a 4 day break around the day 50 mark. I've also been using a portable infrared sauna mainly on my back and more recently on the back and top of my head. I haven't noticed anything very much except a throbbing headache and lots more movement-induced phosphenes. But that could just be the weather!!!
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 SarahLonglands » Mon Jul 16, 2007 3:21 pm

Marie, what a well thought out post! For me it was obvious that I was getting better as soon as I started to get strength and power back in my right arm, something the neurologist deemed would never happen at my stage of progression. The very first thing that came back, though, was my cognitive powers, but that tends to be something that other people notice before you, because I suppose you just don't want to believe that it was something you were losing.

Now, the nerves in your legs come out of the CNS at the furthest point from the brain, so there is a long way to travel, an even longer distance to travel in the peripheral system before reaching the toes, so it is not surprising that walking can be the longest function to improve. I did a walk of several kilometres over a year sago, but I haven't even tried to repeat it since because I ended up walking so badly and it took me so long to recover that I felt I was doing myself no good. Exercise on the ellipse, with no pressure on the joints is vastly better.

In all this, there is no way that my symptoms regressed in an orderly fashion. I also had a habit of forgetting things I previously could not do because as something comes back and you get used to it being back, it seems like normal again.

I also find that stress can vastly affect my function and this is something that everyone should take into account. Earlier this year, I caught winter vomiting virus and I felt all the power draining from me, not only in my legs. When I had stopped vomiting I drank nearly a litre of lucozade and I felt the function returning. As you build new pathways in the CNS, they are always likely to be affected this way because they aren't the best pathways: those are the ones now lost. Exercise will make them somewhat quicker, but never as quick.

I'd better stop now, because this is Marie's blog, after all, but its useful to have the two posts so near together, I think.

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 mrhodes40 » Tue Jul 17, 2007 9:26 am

Yes by all means add the information so it is in one thread and people can tie stuff together.

Sarah, You said we adjust to what we can do now YES YES! that is very true. Once something comes back the old bad way tends to get brushed off like a mistaken thought. It is a funciton of denial, which can be a perfectly healthy coping mechanism, but when it means you forget how you were before then it makes it really hard to assess how you are doing and to recognize improvement. My hand is really very funcitonal.

It has been a long time since I had to stop typing because I could not any longer. That symptom started intermittantly about a year before I started antibiotics, flared with pulses, was quite a problem after I started continuous, but has not been here at all for ages. If my hand stopped functioning right now I would look at it in surprise and wonder what was going on because hand function is a regular part of my life now, it is just normal to me. Conversely, I am never surprised that my leg does not bend, it is just normal for me to walk like that, that is likely irreversible disability for me.

Alex it is a difficult path we have taken to do continuous treatment. I wish us both well!
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Postby gwa » Tue Jul 17, 2007 9:52 am

marie,

Your blogs have been very interesting to me as I believe we have some of the same leg issues. My intention is to start the abx therapy next month, so I will continue to follow your progress as well as that of others.

Sarah has warned me that since I have had MS for so long that I might now see a lot of improvement. It appears that even though you have been SPMS for a long period of time that you have had some positives from the therapy.

Good luck to you and I hope that you continue to improve.

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Postby mrhodes40 » Sat May 17, 2008 5:11 pm

I have lost function over the 2.5 years I have been on abx. I detail my
experience here

http://tinyurl.com/6lho5v

In spite of the fact my MS did not reverse I feel it was a worthwhyile experiment. I was clear all along the way that it was an experiment and I did have improvement in spasticity, irritability, energy, clarity in thinking and I felt good while taking abx. Not one UTI except when I was in the hospital with a hysterectomy! I will remain on abx for the gains I did get until I find an alternative solution.

BTW, I was on copaxone the whole time too,so be assured that not only did this worsening happen on abx watch, but it was also clear that copaxone did not prevent this either.... but then copaxone never promised anything more than reduction in exacerbation anyway so that is no surprise.

My personal bias is that MS is probably not autoimmune. There are good researchers beginning to make that case: Behan and Chaudhuri come to mind. All along the way my goal was to do treatments that I knew would not result in permanent changes in my immune function or would harm other organs so that the treatments I take truly "first, do no harm".

My own mother, a person with RA who was in a trial got a severe lung disease after a CD4 blocker was given to her. They told them it worked too well; it was "like they had AIDS" the research doctor told mom. That drug never made it to market, and they deny the CD4 blocker was the cause of her lung issues, (yeah, right) but she can never take a lot of potential treatments because of this new problem. I did not want to follow in her foot steps. BTW, the drug did not stop the RA either....... 8O

Anyway abx were perfect for me, safe and my doc was behind me. I am sorry they did not work the way I hoped for me. They do work for other people. I know the first guy they treated at VU is still doling well and I know Sarah is still doing well 4 years after treatment she still is getting better! I know her well enough to know she really is better.

I am currently considering revimmune as a possibility. It uses a longknown and well estabished chemo drug with well known side effects. it uses it for only 4 days then you return to normal function with no further immune modulation. It appears to work really well in many cases and a number of diseases may be treated this way. I like this because it fits with my philosophy about doing no long term harm, but early results are very positive with return of considerable function for many patients; even RA which I have in addition to MS!! I know, can you believe it? It is a bummer.

It is not fitting with my bias of MS being probably infective....or does it? I wonder if all the b cells are removed by this process and thus EBV is wiped out...I just wonder. I wonder if CPn is wiped out by asimilar mechanism. I also wonder if the stem cell mobilization phase results in some recovery of nerves. I just wonder. But even if not, the fact it is temporary rebooting of the immune system with complete recovery of immunity expected. I like that idea!

Thanks for reading my regimen entry
Blessings
Marie






Anyway I wanted to update my regimen posts so people can know what is my final chapter with abx.
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Postby CureOrBust » Sat May 17, 2008 6:36 pm

good luck, best wishes and I hope you keep us up to date with your progress if you have time.
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Postby SarahLonglands » Sun May 18, 2008 12:50 am

Marie, it is such a shame that you feel you have gained so little benefit from abx, since you felt so positive last July, as did your husband and daughter:

I asked my husband the other day. I said "Well, do you think I am any better? I mean, my leg is still really weak and I expected that to get better What do you think?" He said 'You are vastly better. I agree your leg is a problem but you are "you" again. You were so out of it before, sort of far away and you had no energy. I would have said kind of depressed. You are doing normal days and seem normal at the end of them too. Your leg is not that much better, but there's more to think about than just your leg" I said do you think my leg is any worse at all? He said no, but I think you need to work out more and not try to do so much. (I have gotten much more involved in things and am busy-he laments that I do not work out as much as he thinks I should)
Now my husband is an engineer, not given to flights of fancy or overstating anything, ever. He is a precise and cautious kind of person. His unequivocal response was valuable for me. I wanted to document it on my thread.
My sister says the same thing but she is more given to effusive support.
My mother says the same thing but reluctantly as she does not want to engender "false hope". (God forbid someone with MS has hope.)
My 27 year old daughter says the same thing and gets mad if I ask her if she would tell the truth if I was worse saying of course she would. I do things with her and the kids now like walk with my cane to several stores at the mall without that numbing fatigue that used to force me back to the car.


Whilst I do feel,that Revimmune seems one of the more promising treatments for refractory MS at the moment, I can't find anywhere where it says it is suitable for progressive disease and I am worried that you might just end up with your disease progressing even faster with it, like the people with SPMS in an early Campath trial:

http://www.mssociety.org.uk/research/news_in_research/campath_story.html

I know you value your clearness of mind above all and wouldn't want to see you lose that.

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 mrhodes40 » Sun May 18, 2008 4:03 pm

Thank you for the input Sarah :D , I have no idea what the actual choice will be next what I might qualify for and what might be possible. I am just beginning to look at other possibilities, and do not know what I will do. Certainly nothing with severe consequences to myself.

No I am not keen on Campath and it's long term outcomes for SPMS! The difference between revimmune and Campath is that campath has profound lymphopenia years out and revimmune allows the body to return to normal funciton immune wise. I think it was the ongoing suppression that was problematic for the SPMS patients in the Campath trial.

I honestly worry what the long term consequences will be for the aggressive suppresive therapies. you need your immune system to fight cells that turn cancerous every day, you need it to fight germs and disease. It is a good thing, not something to be despised and killed.

It is almost like there was one bad cop in a city so they wiped out all cops as if all were bad and that would solve the problem. Yes, the bad cop is gone.............but at what cost?

ANd yes antibiotics helped a large number of things for me, they really did. All you have to do is read my blog here and on CPn Help(dot)org and it becomes obvious there were lots of reasons to feel good about doing the treatment and to feel I was making decent progress. I had kind of gotten to the point that I was ready to accept that my motor losses were related to permanent nerve issues and I was going to need stem cells for that, but an exacerbation and new losses were just not expected by me on abx.

Everyone in my family now agrees that the motor losses this fall are real and significant. Really, up until August, the two year mark for me, I was feeling that I had stabilized and had not progressed. It was the exacerbation in September that changed everything.

My MS is my personal experience of worsening symptoms, and in the end how something works for me can only be determined by acknowledging how something has done in the task of stopping motor losses.

BTW I was on copaxone too, so it is not like that stoppped it either.
And people on every other treatment may also have exacerbations. To my knowledge there is not ANY treatment to date that stops all exacerbations in all patients, although it looks like some people get that from revimmune...but not all!
I repeat that antibiotics were a perfectly reasonable choice and I am glad I did them and I am still on them with a few tweaks so I can fele better think more clearly and otherwise get what I had from them.
marie

EDIT
I am going to edit this so not to bump it up.

I got MRI's in spring of '08 after three years of abx--no new lesions, no inflammation no enhancement at all. The neuro doctor says I am SPMS and that is expected, he is and has always been against the abx idea.

but the previous MRI, just BEFORE starting abx showed slight progression, even though it had been merely a year since the previous and this new one with no new anything is a THREE YEAR span. OTOH I have progressed clinically, my drop foot is dropsier.

I did write to Dr Kerr at JH about revimmune and sent my MRI. THey said essentially that my MRI shows too little inflammation, they would not esxpect it to work. I also discovered that the people who post on the revimmune board are a little too....enthusiastic.....let's say. There have been 20 patients treated and reported on with MS by JH, not "hundreds" And only about half of them actually arrested the disease, though they hope at JH to improve those numbers with copaxone in the after stage of treatment.

At this point though the idea that hundreds have been treated with revimmune and that all patients arrest the disease is false.

I am pleased that I took the time to evaluate the possibility of other treatments. My recent exacerbation of symptoms has to be taken seriously, I cannot complacently ignore this,I must re-evaluate where I am and make a new decision based on what I know now.

here is what I decided: There are no good treatments with high success rates out there for SPMS. There remains no good proof that suppressing immunity slows MS appreciably, though there is a fairly high number of toxic side effects for those same drugs. ie novantrone can result in heart damage (all 4 patient my neuro prescribed it for got that and only 1 was helped by it at all) and it can also cause acute myelogenous leukemia which will kill you. Tysabri is not even approved for SPMS, but doc offered it even while saying same breath it won't help, because there is nothing else to offer.

I choose to stay with abx, and to bump up the regimen to something more aggressive similar to Daisy's kitchen sink strategy.
Aug '08...
I have been trying to get up to full doses as recommended by Stratton on Biaxin of 500mg 2x day. This has been very hard to do, I do not feel well on that dose and it has taken all summer to get comfortable on one 500mg a day along with doxy. I am oging to stop posting on this here and post on CPn Help(dot)org for the rest of the time. I jut wanted to close out this corectly...........
Last edited by mrhodes40 on Mon Dec 29, 2008 7:56 pm, edited 1 time in total.
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Postby gwa » Sun May 18, 2008 4:35 pm

Marie,

One thing that I read on medicalnewstoday.com last week was a report detailing how Revimmune is causing bladder cancer in some patients. Since I am not eligible for this med, I did not pay a lot of attention to it, but it would be a concern if a person is going to do Revimmune.

You could go to the site and search for Revimmune to get the article if you are interested.

I started taking the abx last August and have not noticed any changes. I had hoped that my legs would strengthen, but they are both getting weaker and I am sometimes having to use my wheelchair in the house now. Bummer!

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