SPMS, what would you do?

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Postby SarahLonglands » Mon Dec 04, 2006 6:54 am

Look, Beyond, if you are already taking that amount of doxycycline, you might as well go the whole hog like me and take the Stratton or Wheldon regimes properly. This includes the adjuncts. You will need to do it assiduously and not be half hearted about it but it should stop the disease in its tracks, which is more than you can expect from anything else. I can't say how much you will improve, but stopping progression is the first thing. You can take LDN or statins as well, there is no harm in that, but Novantrone you can only take for a while before it causes damage to the heart, abx you can take for as long as you need. Look in the Antibiotics and Regimens section and you will find many people doing very well on it, including CureorBust and Gibbledegook. You can also look at http://www.CPn Help.org to see even more people, some of whom write here as well. It might not be a recognized treatment yet, but it is a real, viable thing for everyone with MS, not just people with early relapsing remitting disease. You might not get the wholehearted support of your neurologist, but eventually they are going to have to realise that they are not doing enough to help their patients.

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 beyondms » Wed Dec 06, 2006 4:47 pm

Anecdote wrote:Look, Beyond, if you are already taking that amount of doxycycline, you might as well go the whole hog like me and take the Stratton or Wheldon regimes properly. This includes the adjuncts. You will need to do it assiduously and not be half hearted about it but it should stop the disease in its tracks, which is more than you can expect from anything else.


Thank you Sarah. I am not missing too much (NAC and the other abx) but I will give it a try.


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Postby SarahLonglands » Thu Dec 07, 2006 3:00 am

"I have been taking supplements forever. I am not sure they're helping. I also recently started 100 mg of doxycin, twice a day. We shall see if this does anything."

"The fact that I am progressing concerns me but I remain hopeful. I wonder why the 100 mg of doxycin twice a day isn't doing anything."



How long have you been taking the doxycycline? Abx treatment isn't an instant thing. I reacted quite quickly because I was progressing downhill in the end so fast, but other people take far longer. For instance, Katman, in the Regimens section and CPn Help, has PPMS but took about nine months before she started to turn the corner.

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 beyondms » Thu Dec 07, 2006 5:22 pm

Anecdote wrote: How long have you been taking the doxycycline? Abx treatment isn't an instant thing. I reacted quite quickly because I was progressing downhill in the end so fast, but other people take far longer. For instance, Katman, in the Regimens section and CPn Help, has PPMS but took about nine months before she started to turn the corner.


I got off Avonex in early July and began taking 100 mg of minocycline for back acne. Then, about a month ago I switched to doxycycline(100 mg twice a day). I take a lot of supplements with my dinner. To be precise, i take the following: 2g of omega3 fish oil (pharmaceutical grade), 4,000 IUs of vitamin D, 1,200 mg of calcium and magnesium, 1 g of slow release vitamin C and 1,200 mg of slow release B12.

I obviously have to wait a couple of hours after dinner before taking the doxycycline (can't take it with calcium). I have to add NAC, which I use to take. I also have to add the other abx.

So is it too soon to tell whether or not it will work for me? Yes. But today my right leg was really bad. I even tripped going up th stairs and hurt myself. I feel like a 90 year old man walking up those stairs. But I persevere...I am relentless...MS will not conquer me!!!!

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Postby gibbledygook » Fri Dec 08, 2006 12:43 am

I wouldn't put too much store in supplements helping that much. I regret doing exactly the same with diet and supplements in 2004. I even drank teaspoons of linseed oil which tasted like my old lacrosse stick with my raw turmeric and my vitamin a,b,c,d, e, etc etc. I have not recovered the deficits acquired during that period. When I started the antibiotics in early 2005 (doxicycline, roxithromycin and a few weeks later metronidazole) I stopped accruing deficits. It could of course be coincidence and I did end up having a 3 day steroid infusion in December 2004 as my walking just kept getting worse but I'm annoyed at not having started the full antibiotic protocol earlier. The sooner one starts the sooner one's deficits may stop! Of course this may only be certain types of MS as well as not everyone seems to have had such great results with the antibiotics. There are other drugs which may be effective such as statins (lipitor) and low dose naltrexone. I don't think diet and supplements are enough for this disease. :cry:
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Postby SarahLonglands » Fri Dec 08, 2006 4:23 am

What you need to do is to read this, which you can also show you doctor: http://www.davidwheldon.co.uk/ms-treatment.pdf You need to take a synergic antibiotic, like azithromycin, which will both potentiate just the doxycycline and avoid the development of resistance. Later you can start on flagyl, but not yet, and then only for five days at a time. The most important supplements are vitamin D, of which there is plenty of information here, and B12, which, being water soluble can be taken in profuse amounts. You need aldso to make sure that you take adequate amounts of probiotics to replenish your gut flora, two hors apart from the antibiotics. Don't be surprised if you appear to get worse before you get better. Katman is the prime example of this: it took her about nine months before turning the corner.

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 beyondms » Fri Dec 08, 2006 5:52 pm

Anecdote wrote: Don't be surprised if you appear to get worse before you get better. Katman is the prime example of this: it took her about nine months before turning the corner.


Sarah,

It does appear that I have gotten worse since beginning the abx in early July. I thank you and gibbledygook for your comments.

One thing I need to ask you all. If I take 4,000 IUs of vitamin D and lots of calcium and magnesium (4 pills containg 333 mg of Calcium and 167 mg of magnesium), am I negating the effects of doxycycline?

Also, I realize it is better to take the doxycycline twice a day (2 x 100 mg) instead of one dose of 200 mg before going to bed. I get a massive headache when I do the latter.

thanks,

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Postby gibbledygook » Sat Dec 09, 2006 2:38 am

Hi Beyondms! I sure hope you do get beyond ms. Take the calcium and any zinc supplements 2 hours away from the doxicycline as these will prevent absorption of the antibiotic or will in some way make it less effective. This is a right pain and I frequently forget to take my calcium and zinc supplements at lunchtime.
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Postby Wonderfulworld » Sat Dec 09, 2006 3:39 am

Hi
I'm not so knowledgable on the diets/supplements info as some people here, but ur first post u asked if physio and acupuncture help.
I would say yes, definitely in my case.
I don't think they will halt the disease progress but without physio you can develop more disability from sheer mis-use of your body. I would go to a regular physio session, if I were you.
I attend acupuncture once a month and it seems to keep me relatively ok. Fewer infections so fewer relapses. And it seems to help with stress.
Hope things improve for you soon
WW
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Postby SarahLonglands » Sat Dec 09, 2006 5:25 am

As Alex said, take calcium and magnesium two hours apart from doxycycline. You can have milk in your tea, coffee or cereals, though. I take cal/mag last thing at night, doxycycline when I am taking it, with breakfast. I take both lots together then with a glass of water, then straight away eat breakfast because otherwise I feel dreadfully nauseous. You might be able to do this to avoid headaches.

Now, as WW says, physio (or just plain exercise) are essential, because if you don't use your body it will eventually stop working, nothing to do with disease progression.

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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Re: SPMS, what would you do?

Postby HarryZ » Sat Dec 09, 2006 2:37 pm

BeyondMs,

My wife has had MS for 35 years. It's been SPMS since 1996. She broke her leg badly in 2001 and that put her in a wheel-chair, full time!

Marg started on the alternative medicine Prokarin which has helped with several of her symptoms. It's a transdermal patch so it's painless to apply and few if any side effects. It doesn't work for everyone but for her it has been very beneficial.

Marg also tried acupuncture back in the late 90's. It helped a little but limitedly. She is also on physiotherapy since this is quite important with her being in a wheel-chair and not getting anywhere near the exercise needed to keep your system active. As with any MS patient doing physio, there is a fine line between doing too much which can lead to fatigue and other problems.

Unfortunately there really isn't much available these days for SPMS. At this stage there has been axonal damage and that usually can't be repaired. I know there has been a lot of talk about stem cell therapy but this is really in its infancy and very little has been done so far with MS patients in this area. It will likely take a number of years yet before the docs can determine what level of benefit exists with stem cells on MS.

Take care.

Harry
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Re: SPMS, what would you do?

Postby Brainteaser » Sat Dec 09, 2006 4:11 pm

HarryZ wrote:
At this stage there has been axonal damage and that usually can't be repaired.


Hi Harry,

I don't mean to stray from the topic but I was interested by this comment. I also thought I had axonal damage as a result of my increasing disability. However my neuro who is also a leading researcher was examining my most recent MRIs when he told me a couple of interesting things viz. he could see only 1 lesion whereas I thought there had been 4 and secondly that there did not appear to be axonal damage as the spinal chord was fairly regular in its appearance. Apparently, if there is axonal damage, the lower part of the chord can appear withered.

So I was wondering if you knew for sure that there had been axonal damage with your wife or were you simply assuming this? You may like to get another MRI.

Regards,
Phil
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Postby beyondms » Sat Dec 09, 2006 4:40 pm

Anecdote wrote:As Alex said, take calcium and magnesium two hours apart from doxycycline. You can have milk in your tea, coffee or cereals, though. I take cal/mag last thing at night, doxycycline when I am taking it, with breakfast. I take both lots together then with a glass of water, then straight away eat breakfast because otherwise I feel dreadfully nauseous. You might be able to do this to avoid headaches.


Sarah,

Here is the problem: it is best to take vitamin D, calcium and magnesium with a meal. Let's say I take 2,000 IUs of vitamin D, calcium & magnesium, B12 with lunch and dinner, then I have to wait 2 hours to take my doxycyclin.

I usually skip breakfast (toast and cereal are full of gluten) but sometimes I have probiotic yogourt (I think I need probiotic supplements). If I take doxycycline first thing in the morning, then I can only have water and coffee.

It is hard to coordinate all these supplements and abx...

>>gibbledygook, I used to take zinc but not sure why so I stopped it...

>>Harry Z., physio is important and I am relatively mobile. I typically hold the side of a couch or chair and do squats using my right leg only. I am trying to strengthen it. I also need to work on the hamstring muscles where I lie on my stomach and pull my legs to my buttocks.

I often ask my wife to walk on my back at night and you can hear the cracks....it feels incredible. I think I should try a chiropractor to relieve the stress on my back.

Finally, yes, there is axonal damage in MS, especially for progressive cases. Stem cell therapy will be the next big thing in MS...mark my words.

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Postby CureOrBust » Sat Dec 09, 2006 6:16 pm

beyondms wrote:Here is the problem: it is best to take vitamin D, calcium and magnesium with a meal. Let's say I take 2,000 IUs of vitamin D, calcium & magnesium, B12 with lunch and dinner, then I have to wait 2 hours to take my doxycyclin.

Why not take ALL your calcium, D & mag with one meal, leaving the other for the doxy?

brainteaser wrote:there did not appear to be axonal damage as the spinal chord was fairly regular in its appearance.

Maybe the neuro was talking about severe neuron damage. My understandfing of the current common MRI is it only shows major structure, it cant actually get down to show individual nerves and their myelin coating, so it wouldnt show anything unless it was pretty major. I would think the "black holes" people talk about on MRI's would probably be spots the neurons are not good, but I would be suprised if a doctor could see a single or even thousands of dead neurons unless they were clumped together; say in the base of the spinal cord.
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Re: SPMS, what would you do?

Postby HarryZ » Sat Dec 09, 2006 9:01 pm

Phil,

I don't mean to stray from the topic but I was interested by this comment. I also thought I had axonal damage as a result of my increasing disability. However my neuro who is also a leading researcher was examining my most recent MRIs when he told me a couple of interesting things viz. he could see only 1 lesion whereas I thought there had been 4 and secondly that there did not appear to be axonal damage as the spinal chord was fairly regular in its appearance. Apparently, if there is axonal damage, the lower part of the chord can appear withered.


There has been several articles appearing in medical journals in the past couple of years stating that MRI's don't necessarily tell you the true picture of what is happening when it comes to MS lesions. MRI's not only miss lesions in the white matter but they can have a very difficult time seeing them in the grey matter which recently has become of more interest for MS researchers.

Also, you can have many lesions and few symptoms or just a couple lesions and have severe symptoms....as they say, it's location, location, location! There are also MS patients who don't have any lesions but severe symptoms and they figure that these people may have axonal damage.

So I was wondering if you knew for sure that there had been axonal damage with your wife or were you simply assuming this? You may like to get another MRI.


My wife hasn't had an MRI for about 10 years when she had one a month for 10 months during a clinical trial. They told her that the few lesions they saw were old and non active yet her MS was progressing at the time.

Also, about a month ago she had her eyes examined because of recent site problems. They told her that her optic nerves (axons) were damaged and they would never recover from this damage. I can only assume that she has axonal damage in her brain but of course can't say positively.

Then again, I'm not sure anyone can say anything positively when it comes to how MS ravages your body. Heck, they still don't know what causes the disease let alone figure out what's going on in your brain!!

Take care.

Harry
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