This Is MS Multiple Sclerosis Community: Knowledge & Support

[katie45]

Sarah, I'm a new member. I found this site by accident/serendipity? As it happens I started on minocycline Aug 3rd of this year and will add rounds of flagyl Nov 3. My symptoms and onset of this have mimicked your own almost to the Tee.except my first attack which started with vision problems, right arm weakness and progressed to right leg drag all resolved 3 months later in '84. In 99 I was told it had turned to secondary progressive.

I have had an almost continual herxheimer since starting the minocycline in Aug. I'm hoping I will see the results that you have. It helps me alot to be able to read about your first year etc, kind of like my roadmap! Can you tell me how long your initial reaction to abx lasted? I'm at 2.75 months and still finding it rough and weird feelings in my spinal cord!! among many others. thanks, katie

[Arron]

Dear Katie-- welcome to the site! Your experience with antibiotics will be extremely useful to community, so I thank you in advance for sharing with us.

[SarahLonglands]

Dear Katie,

it is difficult to say how long my initial reactions lasted and not everyone will be the same in any case. Thinking back, I remember still feeling rather weird in November: we went to a concert one evening and I had to leave during the interval because I couldn't stand the noise(?) It was only an early music ensemble! I know for a fact that other people on the treatment have had no reaction whatsoever, but have still benefited from it. Like me, you might find feelings of fatigue getting worse in the short term, but I just took things gradually and tried not to do too much.

I must say that I have never had any spinal lesions so have never had any weird feelings in my spine, I did start to have piercing headaches at one point, that moved around my head, but never lasted very long. This continued into the new year, but I had forgotten about them until now. The main current symptom seems to be panic attacks which come on out of the blue, thankfully only during the day. I am not a panicking type person and they soon pass, so I guess I will get over that before long. Thinking about this, it has only been since cutting down to just one roxythromycin a day. I'll have to wait and see what happens when I stop them all, apart from the three monthly booster doses! When I changed from doxycycline to rifampicin, because the second is not immunomodulatory, I started careering all over the place for a few days, as though drunk.

Take care,

Sarah

[katie45]

Hi Sarah..Just to clarify. I have no idea whether or not I have spinal lesions. I do know that I did (in '84) have ms lesions (2 small ones) in my brain detected by mri. I assume I must have more lesions in perhaps both brain and spinal cord judging by the years that have passed and the added symptoms ie: gait difficulties, balance, vision, incontinence etc.not to mention the fact that as of July of this year I have needed to use a skooter to travel more than a few steps.

Having started the minocycline Aug 3 I am still herxing but in some areas improving in both strength and stamina, notice I can stretch my legs in bed now without them going into spasms! The spine thing I spoke of is just a strange ticklish feeling that I can feel run up my spine. I notice the mino having quite an effect on my vision...sort of increasing the focussing problems and the light sesitivities, blurriness etc. If I go off the abx for a day I find my vision is quite improved. I can only hope that this has not been left untreated too long to hope for improvement. thanks, katie

[SarahLonglands]

Hi Katie,

I do know that Byron's girlfriend experienced a worsening of the visual problems when she first started on abx and this eventually sorted out. You could write to him, but I know he has just gone on holiday with his girlfriend for a few days. Back before voting day, I guess!

I have never had any visual problems at all, I'm glad to say, although using an opthalmoscope there is some evidence of cleared up retinal vasculitis. I never noticed anything, though and I am acutely aware of anything visual, being a professional artist.

What is called the Herxheimer reaction is really more to do with respiratory reactions: fluey feelings, slight asthma and even slight difficulty in breathing, all of which I experienced at first, though not everyone does....... What you describe seems more like a disordered return of function: the next stage in the process.

Take care,

Sarah

[SarahLonglands]

This was my last progress report way back on page 2.

Today, September 29th, is my first day of taking just one roxithromycin per day, with the aim of being off them within a couple of months, thereafter taking top up doses of doxy/roxy for three weeks at a time, with metronidizole added for five days in the middle, every two or three months, for a period yet to be decided.

This is all new, so I will just have to see how it goes and keep you informed.

Now it is November 6th and I have not taken any antibiotics for nearly a week. I will start a short booster dose sometime in December, though, of probably two weeks doxycycline and roxithromycin, with 5 days of metronidizole sandwiched alongside part way through.


My physical improvements continue: plantar reflex in my left foot completely back to normal, and much improved in my right foot. Strength of my right hand back to normal also for much of the day, although it tires quite easily still. For this reason watercolours are still easier than oil painting.

If I kneel down for too long I can feel quite dizzy when I stand up, also if I turn round too quickly.

I have started to use my pilates ball in earnest again because I find it helps this problem. Also it is quite relaxing because you have to concentrate so hard not to fall off the damn thing. I have done yoga for years but this is somehow easier because you have something to lean against.

Fatigue is now only really a problem when taking metronidizole, however I would suggest to everyone to try acetyl l-carnitine. I have recently started it and it certainly works for me. You can find more information about in the section on diet. I don't take such large quantities as Felly, though, because I don't feel the need. I guess the best thing is to experiment until you find your ideal dose. I will add this to my treatment regime later, when I have experimented a bit more on doses.

Sarah

( a slightly frivolous edit - on Saturday, just after making this update, we both retired to the kitchen to make dinner. David turned round after opening a bottle of wine and called 'interesting cork, catch!' Without thinking I put up my hand and caught it. For years, if anyone threw anything I invariably missed. I thought I was just a bit clumsy. I'm sure he will try it again.)

[Daunted]

Thanks so much for keeping us updated. Very interesting stuff.

I have now been to four neurologists and two of them think MS is likely, two do not. So I'm still in limbo. I'm getting new MRIs and other tests in the near future and still thinking about antibiotics.

Quick question, though:

I think it is QUITE likely, if not positively certain, that your improvement is due to the administration of these antibiotics.

However, given that you weren't tested for CPN and that minocycline is known to be neuroprotective, how are we to conclude that it is the eradiction of CPN that is responsible for your improvement, rather than the neuroprotection offered by minocycline?

I remember in the small Canadian study the respone to minocycline was quite dramatic.

Maybe there is no good answer, but I thought I would ask anyway!

[SarahLonglands]

I think it is QUITE likely, if not positively certain, that your improvement is due to the administration of these antibiotics.

Hello Daunted, well, I would say that the improvement is certainly due to the antibiotics, because after months of rapid but steady deterioration, as soon as I started the antibiotics this was stopped dead and I have not had an adverse event since. This would be only possible with relapsing remitting disease, which I did not have and even then it would seem slightly coincidental to happen so soon after the treatment.

Doxycycline is certainly neuroprotective so nobody can say for certain how big a part this quality had in the improvement. However you are incorrect in saying I wasn't tested for C Pn. My blood serum was tested a few weeks later and did show some antibodies to the infection. My response to the antibiotics was identical to that shown by other patients being treated locally for proven C Pn infection for other diseases, whether it be chronic fatigue, rheumatoid arthritis or whatever, but I had nothing wrong with me apart from MS.

Since I am now not even taking roxithromycin, one might expect some deterioration if the treatment was only working for the neuroprotective qualities, so I'm afraid you will have to keep watching the updates. I can't really say any more.

Sarah

[Daunted]

Sarah,

Thanks for the response. I stand corrected on the testing- I was referring to CSF testing.

I should say that I personally believe that there is something to antibiotics for progressive MS- there are too many stories out there, some well-documented, for it to be "coincidental". I'm mostly playing devil's advocate as I wrestle with the conventional science and the compelling stories on the net.

Thank God you're willing to tell your story here and I will definitely continue to monitor your progress.

[SMAYFIELD]

"ditto" daunted. I think we all have a wrestling between the conventional science and anecdotal stories. We would all like to think that those that practice medicine and those that are researching, know what they are doing. But to me it seems that their is a lot of misguided research going on. It seems that with all the relatively recent findings indicating a probable bacterial link that more would be focusing their research in that direction. And maybe they are and we just don't know about it yet. Still, I'm disappointed in the response. You can find reports that go back to the fifties about successful trials with antibiotics and MS. Why hasn't more research been done since?

Anyway, I personally feel that I and the whole ThisisMS community owe a debt of gratitude to Sarah and her husband. I know that after starting on Doxycyline, in a matter of weeks, the annoying lump in my throat was gone and the ringing in my ears had stopped. I had a slight set back with my doc and had to get off them for a while. Within a week and a half both symptoms were back. Needless to say I will be getting back on asap.

[Daunted]

Speaking of science: Here's a recent study on cpn that shows no compelling association between cpn serology and development of MS;

Neurology. 2004 May 25;62(10):1799-803.

A prospective study of Chlamydia pneumoniae infection and risk of MS in two US cohorts.

Munger KL, DeLorenze GN, Levin LI, Rubertone MV, Vogelman JH, Peck CA, Peeling RW, Orentreich N, Ascherio A.

Department of Nutrition, Harvard School of Public Health, Boston, MA 02115, USA.

BACKGROUND: Chlamydia pneumoniae (Cpn) has been proposed as a possible etiologic agent in multiple sclerosis (MS). However, previous studies were cross-sectional and could not assess whether Cpn infection preceded the onset of MS.

METHODS: The authors conducted a prospective nested
case-control study among 3 million US Army personnel and 121,466 members of the Kaiser Permanente Medical Care Program (KPMCP) cohort. Serum samples collected prior to onset of MS symptoms were available for 83 MS cases in the Army and 46 in the KPMCP cohort. Two controls were matched to each case on age, sex, and date of blood collection. Microimmunofluorescence was used to measure serum immunoglobulin M (IgM) and immunoglobulin G (IgG) antibody titers to Cpn; IgG titers > or 1:16 were considered positive for past Cpn infection.

RESULTS: Seropositivity for Cpn was not significantly associated with risk of MS in either cohort (Army: OR = 1.0; 95% CI 0.6, 1.8; KPMCP: OR = 1.5; 95% CI 0.7, 3.1) or in the pooled analysis (OR = 1.2; 95% CI 0.8, 1.9). Serum levels of anti-Cpn IgG antibody were also not associated with an increased risk of MS in the Army (OR for a fourfold difference in antibody titers = 0.9; 95% CI 0.7, 1.2) or in the pooled analysis (OR = 1.2; 95% CI 0.9, 1.4), but a significant increase in risk was seen in the KPMCP cohort (OR = 1.7; 95% CI 1.2, 2.5). The difference between these results in the Army and the KPMCP cohort was significant (p = 0.01).

CONCLUSIONS: Neither Cpn seropositivity nor serum anti-Cpn IgG antibody titers predicted risk of developing MS. However, due to the heterogeneity of results between cohorts, we cannot exclude the possibility that infection with Cpn may modify the risk of MS.

[SarahLonglands]

Look, please, Smayfield and Daunted, I don't want to appear rude, but this is my thread in a section entitled "Regimens - Tell us what your using to treat your MS-- and how you are doing." I somehow feel that a lot of the postings here belong in a different thread, because I am losing track of what I have said about my treatment and when. If you like, when I have time, I will take out some of the postings and put them in a new thread. I can't see it being this week though, so perhaps one of you would like to do it? All of it is relevant for discussion, but I just feel it is in the wrong thread.

Sarah

[Daunted]

My apologies for intruding on the thread-if one of the moderators wants to move my messages to a more appropriate thread, that's fine with me.

[SarahLonglands]

Afternoon Chaps, I have decided that it will be quicker and cleaner if I start another personal regimen section and leave this all intact, although much of it should really be in the Antibiotics section. Anyway, in answer to Daunted's posting about the Munger and Ascherio paper, this has been cited previously by Felly in an 'Infections' thread wending its way down the general interest section somewhere and this was my reply:

The Munger et al paper: The authors say that that they found no serological evidence of Cpn in MS, but if you read the paper you find that there is a statistically significant rise in titres in people with progressive as opposed to RRMS. This is especially significant because it was not remarked upon by the authors. It shows that, when Cpn becomes chronically active and immunostimulatory, the disease turns progressive. (This correlates well with another study (Hintzen, Rotterdam) which showed an association between new respiratory infection with Cpn and relapse in RRMS.) http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=14681894

Rogier Hintzen's work, by the way, is well worth investigating further.

Sarah

[Daunted]

The Munger et al paper: The authors say that that they found no serological evidence of Cpn in MS, but if you read the paper you find that there is a statistically significant rise in titres in people with progressive as opposed to RRMS. This is especially significant because it was not remarked upon by the authors. It shows that, when Cpn becomes chronically active and immunostimulatory, the disease turns progressive. (This correlates well with another study (Hintzen, Rotterdam) which showed an association between new respiratory infection with Cpn and relapse in RRMS.) http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=14681894
Sarah

Sarah,

I downloaded the paper from the school library but can't find what you are talking about- if you (or anyone else) get a chance to glance at it and let me know where this is found, I'm keenly interested.

I should say I'm quite interested in getting treated with antibiotics, but I'm an eternal skeptic. A hopeful skeptic, though.

But I can't find that in the paper, and it seems to say just the opposite when I read it, that post-onset samples were higher in RRMS than in PPMS (page 1802).

Any thoughts appreciated!