Gibbledygook's antibiotic log

[gibbledygook]

There have been so many false dawns of hope in my treatment log that I have hardly dared update this diary until now. Today I visited my charming Japanese hairdresser. Normally after the two hours of sitting whilst he smears unguents and bits of aluminium foil in my hair my right leg is exceedingly stiff. It is usually very difficult walking to the basins after this but today, as he remarked, it was much easier. It was unusual for him to say so since his English is very poor, we rarely converse and I visit him relatively infrequently.
Furthermore my walking length has increased a great deal especially since the end of last year and I am now frequently attempting 900 meters or more. My pace is quicker. My initial strides are stronger. I feel more robust. My ambition is much greater...with predictable consequences; I just walked 1.5km and was pondering where to have a rest when the pavement came to the rescue!! That is the first time I've ever fallen in public which I'm sure doesn't sound like my walking is better but I don't think I've walked 1.5km on my own in 3 years; not since this whole accursed disease killed off my right leg motor function. I was laughing when a passer-by helped me up; it didn't matter; I wasn't hurt; I'm walking better so who cares!!!!! I've been waiting to manage 1.5km before giving a positive update since that is a meaningful, objectively verifiable achievement. The farthest I had hitherto managed was 1.25km. An extra 250 meters may not sound much but combined with the extra sensations of strength and the observation of a virtual stranger that my leg is less stiff are enough to fill me with hope.

My left foot hasn't suffered from burning pain at all this year and increasingly feels normal. I so rarely have movement-induced phosphenes that I fail to log them in my diary. I continue to have night spasms especially if I've walked a lot during the day. If I don't walk during the day I don't seem to get spasms so much. I keep taking 4mg of zanaflex and sometime 8mg. My right hand remains the same. I increased to 40mg of lipitor on 26th February (except on days when I am going to drink alcohol like in a few minutes - Santé!!!) and continue to take 200mg doxicycline, 300 mg of roxithromycin and the 2 weekly or weekly pulses of metronidazole. I have completed 31 pulses and have been on antibiotics continuously for just under 2 years.

[SarahLonglands]

Alex, this is such good news and you sound so much happier than a few months ago. I shouldn't worry about falling: I have found that I have fallen more since staring to get better than before, I think because I was so careful then about where I put my feet: "think first, move later" has become "move first, think later" but you know what? I don't care: I just haul myself up, or get hauled up by someone, sit down for a few minutes and then I'm right as rain.

Sarah

[gibbledygook]

Yes, yes, that's it; move first, think later which was the opposite before. I deliberately used to walk slowly and try to think of lifting my feet. I would also have only attempted the cafe 600 meters away but I'm now going for one 900 meters away. Sadly the coffee isn't quite as nice although at least it's smoke free and it's located next to some marvellous antique and art shops. There's even a shop selling enormous fossils and giant precious stones. I do confess to pausing in front of these as they are located towards the end of the 900 meters!

[gibbledygook]

This is my first update in a month. I am now on my 33rd pulse of flagyl, having completed my last one in an Austrian health clinic where I stopped taking 40mg of lipitor after stern opinions from the doctors there. I spent 10 days in this clinic eating only spelt bread, a few vegetables and sheep's cheese. Alcohol was banned and the vast consumption of calcium and magnesium encouraged. By the end of the treatment my stiff right leg was considerably more relaxed and my walking more natural. One of the other guests/patients commented that my leg was much improved after about 8 days there. I attribute this almost certainly to the calcium/magnesium dosing which was very considerable. I did however experience a flare in left foot tingling which was sometimes for a few minutes painful. I haven't had this for a long while which was rather disappointing. On the other hand, my walking feels easier and getting up is not such a stiff activity. I haven't yet tried to walk very far to test the walking endurance as I have to ensure my torn achilles tendon in my left leg is fully recovered before I go for my next 1.5km! The movement induced phosphenes when they rarely appear are now much smaller and towards the blue end of the colour spectrum as opposed to the large bright white flashes of a year or so ago. My bladder is also marginally improved with less hesitancy. I'm feeling much better and have an appetite even when I consume all those horrible supplements.
I have now attempted approximately 700 meters which unfortunately wasn't nearly as easy as I thought it was going to be. In fact walking was much harder than before the Austrian clinic. Mmm and even more curiously, even though the stiffness in the knee and on standing up has virtually disappeared an old malcoordination has become much more prominent than before the clinic. It was this old malcoordination which I first noticed back in 2001 which alerted me to possible MS. Well I haven't really noticed it until today. Ho hum. I'm back on the flagyl.

[gibbledygook]

Just walked quite easily 1.3km on a humid, warm day needing the toilet halfway through. The last 2 aspects usually cause my leg and walking to become very tricky but not so today. This magnesium/calcium/potassium stuff is truly addictive! I'm on my 34rd pulse.

[SarahLonglands]

Great, because it certainly was humid yesterday and it is very difficult to walk with your legs crossed.

Sarah

[gibbledygook]

I seriously love MAGNESIUM, can't get enough of it!! Really amazing effect - I haven't taken zanaflex all week!!

[lyndacarol]

gibbledygook--Most people think of insulin's role as only lowering blood sugar, but it has several important functions. Insulin is an anabolic hormone--it builds muscle. It causes cells to store excess nutrients. It stores magnesium!

Magnesium relaxes muscles. If cells are insulin resistant, magnesium cannot be stored. You lose magnesium; blood vessels constrict; blood pressure increases; energy is reduced because magnesium is required for the energy-producing reactions in the cells.

Could the tingling (paresthesia), weakness or fatigue (or other symptoms) of MS be related to this insulin resistance? I begin to think that all of MS is not a disease unto itself, but rather a symptom of insulin resistance (which is hyperinsulinemia!).

[gibbledygook]

How interesting. Increased magnesium has certainly helped to improve the stiffness but has not altered the loss of motor function and I'm certain that it won't repair the underlying damaged axons/myelin. I am certain because when very stressed and on high levels of magnesium my bad right leg reverts to appalling motor function. I have just experienced this after being stuck in traffic around Westminster for long after I needed the toilet and getting into the flat with my crappy motor function was as bad as some of the worst times I've ever experienced. The damage is permanent. Magnesium can only mask some of the symptoms.

When I review my experience of MS and drugs I still think that the antibiotics have stopped new symptoms developing. It took 2.5 years from my first few, mild, transient, annual symptoms to the sudden loss of walking ability and that 3rd year saw exponential increases in new neurological deficits from the loss of right leg motor function, to bladder incontinence, paresthesia in the left foot and spasms. I was going downhill rapido. In the 4th year I commenced the combined antibiotic protocol (CAP) and since that time I have experienced only one new minor symptom of movement induced phosphenes within a month of starting the CAP. I find it rather odd that I haven't had a new symptom since then given the way in which I had been developing MS. It's possible that magnesium might have prevented damage to CNS occurring as well although I can't possibly say that since I've only just started taking this supplement. All I know is that its effects are largely temporary.

[SarahLonglands]

Before treatment with abx I used to be very hypoglycemic, to the extent that I used to carry dried apricot with me to stop it developing. Since treatment, this has completely gone, so I guess this wasn't to do with hyperinsulinemia, but a certain pathogen devouring all my energy supplies.

Sarah

[Alexis]

Hello,

I have not posted before but have been looking in on the posts concerning the use of antibiotics, have been taking doxicycline for about a year and trying to take roxithromycin along with it, but having difficulty in ordering the roxithromycin. I have also done a few pulses of metronidazole.

Was it noted somewhere that one could do the whole abx regime using only doxicycline? I also have some metronidazole available ... is it ok to pulse with that when I am only taking doxicycline?

Sarah, I would really appreciate your thoughts.

Thanks, Alexis

[SarahLonglands]

Hi Alexis,

I'll send you a private message tomorrow.

In the meantime, you can use just doxycycline but it is far better to use two synergic antibiotics, because as well as making the pathogen avoid becoming resistent to the antibiotic, taken together, they magnify the use of each taken seperately.

Sarah

[gibbledygook]

Since returning from Austria approximately 1 month ago I have been taking flagyl far more regularly. Indeed in the last 31days I have taken 1200mg daily on 21 days out of 31. I continue also with the roxithromycin and doxicycline. During this time my walking has been rather up and down as has the stiffness in my bad right leg. I have just completed 1km on a wet but cool day with no great difficulty. What has been very noticeable at night times has been the tingling, sometimes, painful, in my right leg and right hand. Spasms have been present but a few pills of magnesium sort this out without recourse to zanaflex. Indeed I have hardly used zanaflex since Austria. I cannot recommend magnesium supplements enough. It's very reassuring that there is a natural solution to spasms since taking zanaflex during pregnancy would have been a no no.
There has also been a heightened twitchiness in both arms but from a virtually zero base. I have also for the first time experienced brain fog, sometimes quite debilitatingly. The left foot burn has not been painful and only mildly tingling. Phosphenes are vanishingly rare. Bladder and bowel have seemed somewhat better. I remain cautiously optimistic.
I also had a kenalog steroid injection for hayfever yesterday which my doctor thought might also help with my MS symptoms although I haven't noticed a thing!

[gibbledygook]

I have now been on 1200mg of metronidazole for 29 out of the last 39 days and am on my 15th consecutive day of this. This is the longest consecutive stint that I have ever completed. In 2005 when I did 10 consecutive days my walking became truly terrible and about a fortnight after that pulse of flagyl I could barely manage 5 meters. This time round seems much better although my leg does feel much worse than a fortnight ago. Walking is much harder and I have much less ambition. The stiffness is ever present. My head is subject to sudden, acute pain which seems to move from one side of the head to the other and is never in quite the same place. I also notice a sort of fog. I have noticed a few more phosphenes although they are not nearly as bright and big as a year or so ago. The night spasms and tingling is very intense as well, epsecially in my right hand, right foot and left foot. I continue to take only magnesium supplements for the spasms and haven't consumed zanaflex for a month - hooray! My bladder is as hesitant/urgent as ever. My bowel is even more sluggish than usual although I expect continuous metronidazole really doesn't help with that problem so I try to take acidophilus away from the antibiotics as much as possible. I wonder whether I'm having a relapse but consider the absence of brand new symptoms/deficits a rebuttal of this speculation.

[SarahLonglands]

Gracious, Alex, I think its time to give yourself a little break from metronidazole. Marie is trying to do it continuously but opted for three weeks on, one week off in the end. I would get the fog, the tingling and moveable headaches after just five days!

Sarah