Frank ABX diary

[MacKintosh]

I would try magnesium for the spasticity and try to bring it down with a bit extra (above the recommended on the protocol). Can't say I'd recommend steroids unless it's critical to bring down inflammation. I would be leery of two things; one, the cpn feeding on the steroids, and two, masking what is really happening when you're doing a pulse. In order to establish your 'baseline' and reactions, the clearest picture is to do it without any additional meds (if you can stand it, of course - no need to suffer, either).

You'd be hard pressed to drag that damaged foot around in Chicago today: nine inches of snow overnight! Absolutely stunning out there this morning!

[SarahLonglands]

Hi Frank, I would agree with Mac about steroids, especially if they make you feel down for about six weeks. I'll tell you what: I'm not really surprised that you feel a bit more spastic at the moment, after recovering from your operation. Until this last week, I haven't done much exercise because of my damaged arm and I am feeling it. Magnesium certainly helps, though.

Sarah

[Frank]

Thanks for you suggestions.

I'll wait until wednesday - lets see how things turn out.
I'll take magnesium every night and will also try to do some "workout", as far as possible.

Since two days I'm able to walk short distances without canes - the foot is doing pretty fine so far.

--Frank

[MacKintosh]

Frank, Yesterday, I was explaining to someone about how injury causes the white blood cells to rush to the injury site to effect repair, but unknown to those of us who are cpn-infected, those same white blood cells are delivering a load of stealthy cpn bacteria which invade the injury site and lodge there. You came to mind while we conversed about this.

You are so lucky to have gone through this surgery after being involved with the abx protocol. Your system won't be delivering cpn to colonize the surgery site and debilitate your ankle; any cpn delivered to the site won't stand a chance and your healing will go more smoothly than any in recent memory. Good timing, if ever surgery can be called that!

[Frank]

Its 3 weeks now, since I got rid of my plaster.
I still use a brace when I take my daily 20mins outdoor walk.

My general MS state is altering quickly.
Sometimes spacticity gets really annoying - today I dont notice it at all. My eyesight got better with my new glases, but I'm still not sure if it is as good one month before.

I'll keep watching carefully. On Jan. 10th I'll have my next scheduled appointment with my neuro - lets see how things turn out...

--Frank

[Frank]

Last night the spacticity returned pretty bad, so that I deceided to visit my neuro today. The reflexe in the left leg were more pronounced than on the right side (the opposite is usual for me). An additional electric conductivity test showed a delayed signal in the left leg.

Following the suggestion of the neuro I have received my first IV steroids (1000mg) dose today - I really hate this stuff .

--Frank

[Dovechick]

Frank,
Ella had a few doses of steroids in the first 6 months of her ABX treatment. One of the explanations I have heard from the occasional die off symptoms is that the flagyl works away for a number of pulses at reducing the Cpn in the cells and then the next pulse will actually complete the job in a number of sites which precipitates a sudden loss of cells with consequent symptoms. I hope this all resolves itself shortly.
Michele

[Frank]

I've completed my steroids course (5x1000mg + 4 days declining oral doses). Fortunately I seem to tolerate the steroids much better than before.
I still feel a bit strange, but not particularly bad I actually have signifficantly more energy that usual - lets see how long it lasts.

I have surely seen improvements in spacticity, but that might also be due to a direct muscle relaxing effect of the steroids - I'll know over the next few weeks.

My 7th ABX pulse had been planed for last week, but I deceided to give me a little break and will start it on the next monday.

--Frank

[Dovechick]

Hope it goes well for you.

[SarahLonglands]

Frank, it sounds like you need a break in pulsing: it won't do you any harm at all, so long as you are keeping up the bacteristatics. In fact it is better not to if you feel at all ill or even just plain down.

Spring is coming!

Sarah

[Frank]

I started my 8th pulse on monday.
At the same time I started to catch a pretty bad cold or maybe its already due to allergy - its always hard to tell for me.

My left foot is swelling after all physical activities, but according to my doc thats common for up to a year after surgery.
Regarding my MS state I'm a bit worried about my walking abilities - sure the surgery put me off any exercise but I do feel really bad after 30 min walking. In summer walking for 2 hrs was significantly easier.

I'm not sure what conclusion to draw from the time on ABX.
I originally planed to stay on the protocol for at least a year, longer if I saw ongoing improvements.
Which I currently do not see. Walking gets harder and spacticity is slightly worse - though it became better after taking steroids.
Taking part in a Tovaxin trial would be my favorite choice because it has few sideffects and has a very selctive mechanism of action compared to things like Campath etc. But the phase-III will not start - just my guess - until mid 2009 and I'm not even sure if I will have the right MRTC profile and whether they will establish trial sites in germany.

If a Chlamydia infection was the cause of my MS and it had been cured due to the ABX, then taking Campath would be a really bad choice.
Its really hard to figure out the right steps because there is not test whether the ABX where effective for me or not and my clinical outcome of the ABX in my eyes is mostly unconclusive.
I started in April 2007 so I'll have to make a decision in the near future - any suggestions?

--Frank

[SarahLonglands]

Frank, you're right about campath being a bad choice, but if the tovaxin trial is still so far away, you might as well stay on the antibiotics, remembering that these current slight worsenings could well be part of the erratic nature of improving with this treatment. Apart from the fact that Rica (katman) continued to get worse until at least nine months after starting, many other people who post both here in antibiotics, in the regimens forum and on CPn Help have many ups and downs before they are really sure they are getting better. Do wait at least until the summer, that's my view, anyway.

Sarah

[MacKintosh]

Frank, First, if the trial you're considering won't even be available for another year, you have no rush to decide. April isn't a guillotine, it was just a ballpark date, chosen arbitrarily to mark time. You're not stuck with it.

I, too, originally said 'one year'. At one year, I realized my ''improvements weren't huge, but my bizarre, cascading progression had stopped and all the symptoms I experienced upon diagnosis were gone. That WAS my improvement. I didn't have big, long-term deficits to deal with, so I didn't have big, long-term stuff to recover. What I did have was: no more severe sinus and lung infections, better recall and ability to draw on my vocabulary, slightly improved vision, no more feeling of uncertainty when holding a glass in my left hand. Small things. Things easily dismissed and forgotten, in time, as never having been an issue.

Around two years into the protocol, I noticed something. In my life, it's a big thing only because it's been a fixture in my life for at least fifteen years, with no explanation. Again, it wouldn't register as a big deal to anyone else. I've had a lump on the outside of my left upper thigh for a long time. It started out as an angry, itching red thing (thought it was a really bad mosquito bite). When it didn't disappear as weeks and months went on, though the itchy bit passed, I was annoyed. It looked like an infected blister. When it turned harder and red-purple, it was pronounced an 'age-spot', just one of those things that happen as you get older and nothing to be done about it. A cosmetic surgeon offered to remove it, but said it was risky, due to blood vessels being so close or some such. Over time, the skin stretched over it looked scarred and thick. It settled in as the size of a pea. A large pea.

Last June (20 months on abx), I noticed the size had gone down. By autumn, it was down so noticeably, I posted about it elsewhere. Today, it's down to the size of a tiny seed and I can still feel something 'working' in there and I know it's going away. Again, without explanation, except I kept on taking my abx, even when logic said I could have quit and gone on intermittent therapy by now. If abx is still working on me past the two year point, what good things is it doing INSIDE me, that I'm not as aware of as the big, red marble on my thigh? Probably a lot. If there's cpn in my bone marrow, I want it dead. If there's cpn in my spine, I want it eradicated. If there's cpn anywhere at all in me, this is my chance to destroy it. It doesn't cost a fortune. I'm used to the regimen and it's barely inconvenient in my life. Why not do a little too much, rather than too little and again have to deal with this horrible disease later in my lifetime? I threw my arbitrary 'one year' dicate out the window on blind faith and I'm glad I did. If it took me a lifetime to grow this disease in me, I'm willing to spend two or three years to make sure I purge it once and for all time. There's no harm and every possibility for a good outcome, so I'm staying with it.

One last thing. Rica got steadily worse for eight or nine months, until her disease growth was halted and then reversed. She's not the only one. Ella stills remarks she sees little improvement or complains of a deficit rearing its ugly head periodically. (Her mom, of course, sees and reports the improvements Ella doesn't register. We're not always good at self-assessment.)

A lot of people, including me, see a subtle turning point around the eight or nine pulse point, but only in restrospect. Dr. Stratton is now speaking more in terms of yearS of treatment, not year, which I think is so much more realistic. I really hope you'll recconsider. I just don't think a year is enough time to realize full recovery or to assess improvements. Hindsight being 20/20, and all that.

[SarahLonglands]

Also Frank, you must remember that although I stopped full-time treatment after a year, I carried on intermittent treatment until last June, getting on for four years. All this time I was still getting subtle improvements and I still am now, because my immune system seems to have been reset into behaving mode. I did that because I had stopped getting rections to the abx, so presumably had by and large got rid of the infection. If I had shown a worsening of symptoms at any time I this I would have restarted straight away.

Sarah

[notasperfectasyou]

Frank,

I'm neither an expert on ABX or Tovaxin. But, I will start out with saying that I've lost a fair amount of money on the shares of Opexa that I still have. Which doesn't make sense since I solidly think that CPn is the cause and ABX is the solution.

But, the point I want to make is, what does the ABX theory mean for Tovaxin? I'm no expert on either, but, I'd think that the benefit of Tovaxin is that it stops your Immune system from going after the CPn and causing inflamation and .......... my speculatoin is that CPn over the long term would have freer reign over the brain. But since the stuff isn't officially the cause of MS nor is it easily detected, the Tovaxin folks get to say that you have been cured - no more exaserbations, no more inflamation. But, we are then left to think, "well what was in my body that the ABX was killing that caused inflamation and die off symtoms?"

This might be slightly immoral, but I think the Tovaxin folks will have terrific results and get funding to keep the company in business. But, I think they are only fixing a symptom, certainly better than the CRAB's, but still I think it's only fixing a symptom.

That's my 2 cents. I'd love to know what the experienced folks here think of this process. Chew it up, I'm learing. Ken