Still Not Done Yet

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

Postby SarahLonglands » Sat Jul 15, 2006 10:52 am

In Liverpool? 8O Well, I think everyone has sun and lack of rain this summer. Normally its only us down in the south east, and then not all summer. I used to live in Lytham St. Anne's, a bit up the coast from Liverpool, and when the Ryder Cup was held there, it rained nearly all the time. My flat was just up the road from the golf course: I would have had a bird's eye view, except it was pointing in the wrong direction.

I am nearly two years into intermittent treatment now and am still carrying on, every two months, because I did stop full-time treatment very early. Two months for me seems to be enough for stopping anything getting the upper hand, and I never experience what you did when stopping, but its better to be safe than sorry. Every one is different in any case and I don't think you need be envious of someone who has only at the moment managed to get her walking up to less than 5 km, when back in '94 I could do 40 km.

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 Notdoneyet » Thu Nov 30, 2006 10:57 am

Golf season is a month gone now. I had a great summer and was out on the course even more than in the previous three years. I didn't need to take days off during the week to recuperate physically, even though it probably would have aided my sanity. I even held an 18 handicap for a couple of weeks, something I hadn't done since 1994, before MS became a part of my everyday life.

I started minocycline two and a half years ago and have been following the Wheldon regime since November, 2004. I stopped treatment briefly in the spring of 2006, but when symptoms started creeping back, I resumed antibiotic treatment. I'm not experiencing the huge swings that I used to, earlier in the treatment. Things have stabilized.

I am still taking antibiotics every day, but it is easier now that I have substituted azithromycin for rifampin. A lot of my spasticity seems to have disappeared, but left in its place a limp which goes from hardly noticeable to blatantly obvious depending on any number of conditions. I do still feel like I am improving in subtle ways and am still experiencing small breakthroughs two and a half years after starting my antibiotic journey. During that time, other symptoms (restless leg syndrome, notably) have come and gone and returned again.

My steps are much lighter. I don't stomp around the house like I used to and seem to have reached a new level of balance and stability. Last week, I was showing off and did two, 360º pirouettes. I'm sure I didn't look like a ballerina, but I felt like one. I handle stairs more easily. Two years ago, I often struggled to walk 100 steps on my treadmill. After a week or so, I could do 300 or maybe 500 steps at 1.8 km/hr. I just stepped on and did 300 steps at 2.5 km/hr without a misstep.

I mostly notice changes in the little things that I do every day, like walking out to my car, going down to the basement or in my gym routine. I notice myself leaning on things less, taking two stairs at a time sometimes, or getting on a fitness machine without having to use my arms to move my legs.

One of my worst MS symptoms has been headaches, which come on at certain times of the year, usually in the spring and fall when it is most humid here. If my body temperature goes above a certain point, under these conditions, a headache results, which ranges from 1 (mild discomfort) to 4 (excruciating, wish you were dead, pain). The discomfort or pain would dissipate on cooling down with one of the methods I have developed over the years. Recovery could take anywhere from ten minutes to several hours depending on the severity of the headache.

Last year (2005) was my worst year. I probably had about a hundred headaches with about half reaching 3 or more on my rating scale. They were at their worst in the spring of 2005 when I was still undergoing major changes due to the Wheldon protocol. I often thought that I would experience activity in the areas that were being fixed at the moment and that things often got worse before they got better.

In 2006, I experienced a welcome reduction in the headache problems that had been escalating annually over the past ten years. In the spring of 2006, I had a couple of headaches that reached the 3 stage, but I have experienced less than half the number of incidences, this year and they have rarely exceeded 2 in severity. They have been fairly easily dismissed. Life is, indeed, sweet.

While the improvements that I have had may seem small to observers, they have been huge for me. Everything I do is easier and I have a much healthier vision of the future. That being said, it has definitely sunk in that I am not going to have anything near a full recovery. However, if I stop progressing, but still have physical deficits as a result of multiple sclerosis, do I still have MS?

I'm still not quite done with my treatment and, into my third year, don't have any clinical proof to back up my story. No MRIs and I don't even know that my improvements would make a significant shift on the EDSS scale. This may be a good thing , in terms of my disability insurance claim, but it makes it hard to convince people that my condition is improving. I still have some obvious difficulties, but I am so much better. I'm not making as much noise any more, just enjoying the improvements that have occurred and trying to live as full a life as I wish to.

Best wishes,
Colin
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Postby SarahLonglands » Sat Dec 02, 2006 8:10 am

Colin, the longer you go, the less obvious the improvements will be, but even after over three years, only one of those on full time treatment I am still seeing subtle changes, either just ongoing slight improvements or a sudden realisation that I have just done something which I wouldn't have thought possible three years ago. When I started seeing that I had halted this wretched disease I rather naively thought that I would be back to doing twenty mile walks within the year. I have given up worrying about that, but the fact that I recently realised that for a certain amount of time I can walk like I used to - long and flowing, not a trace of a limp, does mean a serious improvement, because for as long as I can do that I am not putting strain on my joints and using more energy than I need by walking awkwardly. So this should eventually lead to an improvement is walking distances.

The improvement in your headaches is to my mind quite amazing. I have never been greatly troubled by headaches, but when I do get them I have such a low tolerance of pain that I reach for the ibuprofen straight away. That must make you feel incredibly better.

However, if I stop progressing, but still have physical deficits as a result of multiple sclerosis, do I still have MS?

Joyce asked me if I still thought I had MS in the Antibiotics section recently. I decided on balance, that whereas people who supply insurance and so on, would say yes, I did, I would say no. After all, MS is a chronic, disabling disease of the CNS. Once it becomes progressive, it is all downhill. I have been climbing uphill for the last three years and three months.

Best wishes to you!

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 Notdoneyet » Sat Dec 02, 2006 1:18 pm

Hi Sarah,

It seems to be the headache time of year. We have been inundated with snow and some cold temperatures.

Alcohol also seems to exacerbate the headaches. Just last night, I experienced one after consuming just one glass of beer. Fortunately, I was able to cool off by stepping outside, in -8ºC temperature, for five minutes, in an unbuttoned, light shirt. When I started feeling cold, the headache dissipated.

Last year, a similar incident left me incapacitated for hours. I mostly avoid alcohol during the most humid times of year. Although I am thankful that the headaches have improved, they are still present, so I'm still on guard. I hope they don't get worse again now that I said something.

I have said it before, but it seems that the disease is backing up slowly, as it came on. If I go this log again (five years total), without an exacerbation and no depreciation, then I may even go all out and have two beers to celebrate.

Thanks for your ongoing support, Sarah.


Colin
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Postby Notdoneyet » Tue Oct 23, 2007 8:24 am

Hi All,

As I hinted in an earlier post on Anecdote's thread, I, stopped my CAP on July 26, 2007. Over the next six weeks the tingling in my hands and feet grew stronger, my feet became much number and my balance and and overall coordination became noticeably worse. It was like MS returning. I had stopped once before, over a year ago, and had similar results, in the same amount of time.

During my interlude in 2006, I contacted both David Wheldon and Dr. Chuck Stratton. Advice from both differed slightly with Stratton advising that I should continue treatment for three years or more and Wheldon suggesting that the chlamydia pneumoniae was probably eliminated, but the anti-inflammatory properties of Doxycycline could be responsible for my slide. i went with Dr Stratton at that time, to be on the safe side.

This time I did a little experimentation. On September 3, 2007 I started doxycycline by itself. I wanted to see if it was an anti-inflammatory property of the antibiotic that was at work, so continued taking doxycycline alone for another six weeks. I had limited improvements in all areas previously mentioned. However, it wasn't until I added azithromycin on October 16, that I started returning to the improved condition that I had been at prior to stopping treatment altogether on July 26 and after only a week I am feeling much better again.

I have concluded that it is more than an anti-inflammatory at work and that I will continue the full CAP for as long as it keeps me feeling like I do now. Having symptoms return makes me realize how far I have come and I don't want to go back to full blown disease state again. So, in the spirit of empirical treatment, I will continue as long as it seems to work.

Colin



Dx'ed in 1984, still ambulatory. Started Minocycline in May 2005. Full Wheldon CAP since November, 2005.
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Postby gibbledygook » Tue Oct 23, 2007 8:34 am

Hi Colin, it's a bore having to keep popping those pills but it seems this ****ing disease doesn't respond very well to short term treatment. I've been doing this for a few months longer than you, had a blast at continuous metronidazole with 21 hours of infrared sauna to boot and I'm now feeling worse!!! But like you, I'm not coming off the pills in any hurry as there isn't very much else to take and I fear that coming off them would bring the MS right back.
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 Notdoneyet » Tue Oct 23, 2007 8:58 am

Hi Alex,

Sorry to hear that you are having some problems. I had tried two week stints of metronidazole for almost a year and at the time it prevented the swings that I had been experiencing between pulses. Never tried as much as you, though. Over time I have developed more of a distaste for it. It will be interesting to see if I have a reaction the next time I pulse. It has been a few months now and the bugs ought to be piling up.

I was looking at one of your old posts, on this thread, I think and you mentioned doing well on INH. A friend of my parents, whose wife was diagnosed with MS in the 1950's said that she had been prescribed INH at that time and he felt that that had kept her going for a long time.

Colin
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Postby gibbledygook » Tue Oct 23, 2007 10:13 am

Hi, yes I tried INH and rifampicin for about 6 months but unfortunately went on to develop hepatitis which is quite a common reaction to these drugs. If you try these drugs be sure to have monthly liver function tests as they can be really quite hazardous. I also think that any perceived improvements then had been temporary and that my deficits simply fluctuated quite randomly but within a 1.5km walking boundary of a mean of about 500 meters which has more recently shrunk to about 400 meters. I wouldn't therefore put much more faith in the INH and rifampicin than the doxycycline/roxithromycin. And be careful with your liver!
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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