This Is MS Multiple Sclerosis Knowledge & Support Community

I am posting an update here. At 6 months of abx, I am doing well. To recap where I started from soa newbie needn;t read this whole thread:
I have SPMS and have had MS since '91. I have taken copaxone since it came out and progressed anyway as when I started it I could still jog.

I started abx in September '05. I take doxycycline 200 mg per day and azithromycin 1 tablet 3 times a week mon, wed, fri. I started taking flagyl in December in pulses and now have had 5 pulses.

My current abilities are: I remain spasm free taking no medication for nighttime spasm except one single dose. COnsidering I have tried repeated ly for years to get off that stuff this is a uhge accomplishment.

My massage therapist notes my muscles feel normal and not at all spastic so that her work is actually getting somewhere. My legs are loose and comfortable after massage.

I find myself doing things that I would not have had energy for before. For example, I have numerous flower pots on my porch and every year my sweet husband sets me up with a wheelbarrow and over the course of three days I clean out all the pots and get them set for the new flowers. This year I got out the wheelbarrow by myself and did all the pots in a single day. I kept thinking Oh I'll just do one more thing then go in....and before I knew it the job was done. This represents the kind of energy I have these days. I can just do more, and it is especially noticeable at times when it is a yearly or rare thing we are discussing. IT feels normal to me to have this energy

The thing I most want to come back is my weak right leg. The foot on that leg is like a piece of wood attached by a hinge and the leg itself is like a log I have to drag with me everywhere. WIht that floppy foot it is challenging! Sometimes since abx it seems a little bit better, for example, yesterday it was "awake" enough to work itself into my shoe instead of me grabbing my ankle with my hand, pulling my foot up to my knee, grasping the shoe in the other hand and working that shoe on an otherwise limp foot as has been normal for me. It was exciting to have my foot workitself into the shoe from a standing postition. Yet this tiny gain is not relfected in wonderful walking yet. We will see.

Oh and here's something I keep forgetting. My hand had gotten to be a problem when I started this treatment. I could type for say an hour then my right hand would get so clumsy it would be impossible and I'd have to hunt and peck. Recently I realised I can type for long periods of time without losing fiunction and I had actually FORGOTTEN that I ever had a hand problem. I noticed it when it came back during a flagyl pulse last week. My hand was so bad that I could not type at all for a ccouple of days and then I said to myself "Oh yeah! I used to have this problem didn't I?" It is not totally normal but it is much much better than it was

I think this is a good reason it is hard to notice improvement. We tend to imagine ourselves well and the thing that stands out to us is what does not work. IF I spend all my time looking at my walking I might say "Oh this doesn't work for me" but neglect to credit this other very important gain. I have to be careful not to make my leg being normal the litmus test for getting better because I have a black hole in my brain on the left in the back. It is entirely possible that the nerve for the leg is gone and will not come back.

SO I have been on empirical treatment for 6 months and clearly have some important gains. I will remain on treatment for another 6 months and reevaluate then.

I want to take this opportunity to say thank you to Aaron and all the good people here at thisisms. This resource made it possible for me to do this and thanks to everyone's input and thoughtful postings many of them questioning this approach which is after all experimental has helped me clarify for myself the reasons why it is a plausible approach and an OK thing to do for me in my situation (I was offered novantrone something I already had decided was a no go for me) I want to offer to anyone reading this that may be wondering if they might try abx for themselves that you MUST read as much as you can about it. It is a theoretical model with some people myself included reporting anecdotally improvements. This does not mean it will do the same for everyone nor does it mean that it is proven, nor is it true that neuro's are hiding this from anyone. The scientific debate about whether or not CPn is in every ms brain a few brains or no MS brains is simply not resolved and will not be for at least a decade in my mind. I do not have a decade so I am glad to do this for myself now, and incredibly pleased at the response so far. AEveryone needs to talk to their own doctor of course.
Blessings
marie

This is music to read, Marie. You were a skeptic as I renmember, and have made clear and marked improvements. That is wonderful both for you personally and for the cummulative total of numbers an abx. Incidentally, I was PPMS and have been on abx for almost 18 months and have gone from 6.7 to 2.5 on the EDSS.

Rica

Thank you Marie for your eloquent statement, I'm glad our site and community has been of help to you

And your comment

This does not mean it will do the same for everyone nor does it mean that it is proven,

is extremely important. We are all about education, patient knowledge, and empowerment. What treatment, with its inherent risks, is eventually followed by a given person should be something decided by a well-read patient and a good supervising neurologists/MD (critical with experimental treatments!).

All my best,
-a

Thank you Aaron. Empowerment is what this site is about to me also. No corporate sponsorship and freedom to talk about what is working or not for you free of censorship. If this does not work for me in the end, you'll hear about it.

I am a medical person I like and expect good studies to back up a treatment approach. This model has some good research supporting the theoretical model-very good in fact, but no clinical research to prove it. In other words, the research on chlamydia pneumoniae in bulk offers a very good possibility for how this could be the cause of MS, yet we have no studies of 300 people being treated this way to generate some good clinical data. The bulk of research has focused on 'can we culture it in CSF', and the answer to that is sketchy, but there is a LOT of research showing that persistent CPn infection is NOT culturable, so this may an entirely moot point. Case in point, we cannot do a blood test for MS either can we? yet we know it exists.

It is entirely experimental for one to do abx at this point. People should do it only with the guidance of a physician to monitor for side effects. I have a great doc who uses abx for many chronic illnesses and has seen very good results with them though I am her first MS patient.

One could certainly post here about one's experience with fish oil or adaptrin or b1. Or ones failure with the same. This is what makes this site great. Thanks again for the open forum

Thanks Rica also!

I want to clarify also that I have taken one pill, once, of antispasm med in a couple of months. it almost appears I meant that I was taking one a day, and that is not right. I have taken spasm medication for years of one type or another so not taking this is a huge change. I have some small spasms now but less than I had while taking the drug a while ago.
Marie

Update today at nearly one year of treatment. I have just read my whole thread here to refresh my memory about where I was funcitonally, what a journey that is to read. Gosh, it is most useful to read about my past functional limits so I can compare now to then. If you are thinking of starting such a journey do make sure and note your functional limits so you can compare later. Changes hapen slowly and we tend tno to be accurate in ur recollection of how we used to do, so a hard record of that is helpful

First a stement about how treatment goes: it is very slow changes , so slow it is hard to see a difference. I do not find it easy to see myself as better. Rather it is easy to notice the deficits that still remain, constantly comparing myself to my imagined and hoped for improvements. ie I still limp significantly but expected to return to walking normally, so I still compare my current waking to "normal" and still find myself lacking that achievement. Yet we recently had our annual summer party and family members had a chance to compare my current ability to one year ago and I was unanimously assessed as being: more energetic "last year you seemed almost distant you were so worn out" and walking better -though still limping, it is not so noticeable a limp. I'm told my leg tracks through in a more straight line where it was a very wide swing. I can see how it tracks but to me itis still 'notnormal " so it is harder to see myself. I did see myself on video and watched my limping self and thought hey that was worse (the video was December)

I still have trouble with a dropsy foot but it isn't as bad as it was... I can go to the gym and work out for 20 minutes on the elipse at level 3 and still walk with a limp afterwards. I seem to recover though so that if I sit on another weight machine for a mere few minutes, I can use my legs again to work out, say to do squats in the squat machine. I do not have a record of how long it used to take to recover between machines, but it seemed much longer than that. I recall just barely getting from one thing to the next. I can now plan to go grocery shopping after working out knowing I will recover and will be able to walk my "usual" wobbly way and be able to get around in the store afterwards

My hand is a problem. It comes and goes in terms of funcitonality. Right now it is really hard to type, and sometimes it is like that. This is not better than it was, but I have carpel tunnel too, so that clouds it.

I remain relieved of spasms. I also do not get that terrible stiffening from head to toe when I stand up from sitting, instead it has evolved into a much milder kind of stiffness, as in: it used to be I'd stand up from the couch and "sieze up" from head to toe for several seconds and now instead my legs seem really stiff and hard to walk for a second or two, but still they respond to my deisre to walk instaed of being totally "off line" as they used to be, if that makes sense. I can walk in a stiff way if I want

I was not in early MS when I started this but rather had long established deficits. As such I cannot say that I will ever walk "normally" again even if MS is a CPn disease, it is likely that there is some permanent damage that will not go away without regeneration of some kind. But no matter what I am glad to have taken this journey and I will continue based on the noted improvements and lack of any negative side effects.

marie

Marie, its much too late now to do anything about it, but I do wish I had done as you suggest. Well, I did start out doing so, but working on quite a short fuse sometimes, I got annoyed one day and deleted the whole lot. I must say that at the time I wasn't planning on coming out with all this, just working on getting better. I never wrote on a forum until six months after starting treatment, and then it was some half baked English site and I might well have given up if I hadn't found ThisisMS. It is very difficult to see how you were, so it helps enormously when you have friends and family who can independently compare the differences, and also to see a video of yourself from a few months back.

Knowing what a stupid thing I had done, I have kept any mail from anybody doing this treatment which describes their symptoms at any one time, so I kind of knew already that you had some definite improvements, so I'm glad that your family see it as well.

What really sticks in my min about this update is your description of seizing up when you stand. I was doing that quite badly at first, but gradually it softened and then vanished. What I still do find, even now, is that if I have been sitting and really concentrating on something, then the doorbell rings or the phone rings and have left it over the other side of the room, I have to concentrate on walking properly for a few seconds, then I'm fine. Sometimes I don't limp at all, sometimes I do but that sees to depend on what mood I am in.

I think you have already gone way beyond the first aim of stopping progression. Certainly people in the very early stages of MS can make a much quicker and more complete recovery, but we, along with quite a few other people are showing what is possible with longer term progresive disease. Lets see what the next year brings.

Sarah

Yes indeed I am up for the journey certainly. I am really glad tohave done it. Thank you Sarah for coming out with the story for others to share
marie

Hi Marie, your description is very good in showing the subtlety of our improvements. I'm very glad that you're persisting with this treatment especially as I think you started antibiotic therapy at about the same time as me so you're mycomrade in arms against this disease! It IS disappointing that we can't walk easily YET! But I think in another year we might be doing a very very great deal better and I think NOW we may have the worst behind us. Fingers crossed!

Congratulations Marie,

It is amazing how closely your recovery matches mine. I kept on saying, "Same here" as I read your description of the changes you've experienced. I wish you continued success as you go forward.

Colin

Thanks Colin and Alex!
I am glad to have such a great group of supporters. Thank you so very much
blessings
marie

A comment on exercise here to avoid taking Cur-o's thread of topic:

Cure-o commented that exercise it vital to recovery. Indeed I want to share my discovery along that line as well.

Befire abx I worked out 3 times a week at a gym, had done for years. My MS was progressing though so I was starting to fall once in a while and it was really getting hard to work out. My perception of where I was was that I had "just begun" to have trouble and that of course I would recover rapidly if anyone could. In reality I had started having drop foot in '02 significant enough to warrant my physical therapist saying get a brace (which I refused), but in my mind I conveniently shrunk that time frame to just a few months, imagining that had only just started to get weaker.

When I started abx, I eagerly anticipated being able to walk normally again, to hike to bike to have that drop foot go away. I let the gym slide thinking as soon as my leg came back THEN I would exercise it would be so fun! SO Easy! Instead of a struggle it would be sheer joy as day after day I enjoy new function! I fussed around with a numbe rof other factors: I changed workplaces and the new one was far from the gym, I got a home machine and told myself that was equal, then I'd have pulses where I did not feel that well and I'd slide......
Finally, in June I recognized that I was not regaining strength as I imagined I would and it became clear that i would have togo back to the gym DILIGENTLY, just like I used to do no excuses. I was not going to just wake up one day with my drop foot gone and be able to go jog on that marvelous day, and waiting for it to happen that way was hurting me.

SO I went back and surprised myself at how I did, I was able to go on the elipse my old machine for 20 minutes no problem. I could still walk OKish afterwards, meaning I did not fall and it felt in fact more sure footed than I expected. I got from machine to machine more easily than I remembered it had been for me previously.

Was I limp free or could I jog-no. I am better, but in more subtle ways, but then I have some long standing deficits.

I have now been working out more regularly than I had done. I made more of a priority of it, and rather than waitng for recovery to happen I am once again working towards regaining as much as I can via exercise AS WELL AS allowing abx to do their work.

Just a thought for others considering the approach and thinking as I was-that perhaps if you just wait for the recovery THEN you'll exercise when it's easy. Doesn't work like that...as Cur-o and I both found out exercise is integral to getting the recovery.
marie

I was reading Alex's log and responded then realized it belongs on my thread as it is mostly about my own journey with antibiotics...

I started on continuous treatment at doctor advisement in April. I have RA as well as MS and it remains stubbornly intractable. It was felt by the doc that unless I would do a continuous regimen I would not get free of the RA pain.

On continuous treatment I can attest to the suicidal depression Alex discussed on her thread. It is overwhelming and always feels completely "real": what I mean by that is every negative thought you can have about your condition seems completely likely. I can't take continuous treatment continuously! I need a break every little bit, even if just a day. I always reset my "optimist button" as I plunge back under........ I can go longer now than I could the first month of continuous. It seems easier than it did in April, so I am thinking the depression is related to inflammatory cytokines generated by treatment.

I too have no remarkable motor improvements. I walk pretty much the same as I did when I started antibiotics, so we'll just get that out of the way. Before I ever started this I already had a black hole in the middle of my oldest, largest lesion and I have assumed that the reason my right leg has remained weak and with a drop foot is that the nerve for that particular motion is just gone. As such, it is unlikely that will ever go away on its own and of course antibiotics are not known for their ability to regenerate nerves. I am hoping for some regenerative strategies to be available in the next few years like stem cells or something. The rest of me seems not to be progressing and my hand is really doing well, so overall this has been such a length of time at 23 months that even though I used to be a slow progressor I would say that I have not gotten worse and seem to be holding the line, which is an important feat.

My spasms went away early on at say about month 6, just about at my 4th pulse. I was over the moon! God, those spasms are horrible! At month 13 I had a hysterectomy and I could not do pulses for a couple months, I was terribly unwell and overall it set me back a whole lot and the spasms came back. I was intensely, horribly disappointed. they did not clear up when I got back to pulses again and stuck around. I was back to using nearly full doses when I started continuous.

The spasms cleared up in the first long wave of tinizadole, then came back briefly when I took a 10 days off, remained at a low level and have been gone now completely for weeks.

I could speculate wildly about the fact of the coming and going spasms, but it would be just speculation. One thing I can say for sure is that I have had them for YEARS with only marginal relief from the various meds I was taking, so it is nothing short of miraculous to me to have them go away again. I hope they stay away now! One thing I also notice is that when I am off the spasm meds I am stronger during the day ( I took the meds at night and never got to the point I needed them during the day). I am making a point of going to the gym to try to take advantage of the new found strength.

I will also comment that it was not a good idea to get a hysterectomy mid treatment. It has really muddied the waters for knowing how I am doing. Just prior to it I felt I was getting somewhere with the antibiotics. I had been resisting the surgery for years, and when it reared its head again I thought I am doing well on antibiotics, I'll just go ahead and do the surgery (my fear prior to that was that it would set off a big exacerbation I'd not recover from). Well, no exacerbation but good grief! Weeks in bed --I had extensive repairs, and let me tell you, no exercise for weeks makes anyone very weak let a lone a person with MS.

I also have the sausage foot feeling. When I go to the dentist for a cavity and my jaw is waking up it also feels kind of tingly hot odd so I am hoping it means that the sensation is returning in my foot to have it feel that way. We'll see.

And I know you guys are not into probably RA stuff, but my rheumatoid factor (those lucky Rheumatoid people have a blood test ) was 270. It is now 130. 14 is normal. I am taking no medicine at all for my rheumatoid except antibiotics. However it should be noted that RA has minocycline as an accepted treatment option.....HOWEVER, I took minocycline all by itself in'02 and it did not help. I am not now on mino but doxycycline and azithromycin and tinizadole, just for the record.

IMHO the antibiotics are helping the RA and the lab supports that conclusion. I think the fact I am able to take no medicine for the RA is due to the fact that the antibiotics are a little bit anti-inflammatory (130 is still really high and would suggest the need for some DMARD drug) but it seems to me the fact the Rheumatoid factor is dropping in numbers with no other treatment is due to the antibiotics.

Overall at this point I am pleased with my antibiotic regimen. The spasms being gone is beyond wonderful stuff, and assuming they stay away I know I will get stronger because of not taking the antispasm meds even if my dropsy foot stays that way.

I was at the point that the next level of medication for me was unacceptable by my own determination. I was OK using CRABs but was personally unwilling to go to the novantrone, tysabri level of medicine, so I was at a dead end. In my mind I had nothing to lose by doing antibiotics for this issue and I was willing to accept the fact that it was possible that it would not work for me-it is unproven even though the theory is well supported meaning there is a lot of good peer reviewed literature that suggests it is plausible that a germ is involved in MS and RA. I decided I could certainly bail and take novantrone later if I felt I was getting worse on antibiotics since antibiotics are not a permanent decision that you can't take back if you decide it is not working for you. So anyway I know people wonder whatever happened to the people who were taking antibiotics, I am one who has not progressed and at this point I am happy that I did this. The RA seems promisingly well impacted also. One thing about that it is really nice to have some labwork to be looking at.
marie

Marie,
You mentioned horrible spasms. I've found that different people mean different things when they use the word spasms. Do you mean muscle twitches, or do you mean excruciatingly painful muscle cramps?

I have the muscle cramps and not much of anything is really stopping them. It would be interesting to know ABX does.
Carol

Hi Marie,

I'm glad your RA factor is down. Let's make that 2 figures by year end!!

Let's hope the new squidgy sausage foot syndrome is a good sign! I think continuous metronidazole is the key for people like you and I. I'm very glad you have a good rheumatologist.

Thanks Alex! It is doing something fo the RA for sure, and though the MS is more tricky and it is not as easy as I first imagined it might be to do treatment. I thought a few months and it would be as if I never had MS. But I have had MS for at least 16 years, probably longer if you look at weird stuff before I was diagnosed, so it is not really reasonable to think it would all go away completely. I'm happy anyway.

Carole, I know what you mean! People with restless legs sometimes think that is what you are talking about, or people with myoclonic jerks as they fall asleep think that is the same. I am talking about flexor spasms, severe spasms that make your muscles contract and even strain or sprain themselves because they flex so hard all by themselves for no reason at all(I've had about 6 strains because the spasms were so bad the muscle hurt itself--oh a special misery it is to have a strained muscle now spasming) I took baclofen and requip at bedtime because I had both restless legs and flexor spasms. I actually do know the difference between them and know which drug to take based on how I feel. Right now I am taking nothing, and it is a great blessing to have those quiet legs as I fall asleep. Mind you, this is not the same thing as when I am changing my positiion, say from sitting to standing, and now I am going to sort of freeze up for a minute until I can relax to move, I still do that somewhat. This is an uprovoked spasm that attacks from out of the blue.
It is very distressing.

marie