Frank ABX diary

A forum for the discussion of antibiotics as a potential therapy for MS

Postby Frank » Mon Jun 04, 2007 1:21 am

The past week was very much up and down.

I did absolutly fine until thursday, when I had a very unpleasantly stressful day.
Since I have MS I know I'm quite vulnerable to stressful situations and when I cant avoid them, stress also affects my physical abilities.

On my weekly walk (on saturday) I did 85 minutes (compared to 110 min the previous week), my gait was a bit worse than the week before and I was very tired afterwards.

Anyway, I recovered on the following days and now I'm feeling pretty good again.

--Frank
Treatment: Gilenya since 01/2011, CCSVI both IJV ballooned 09/2010, Tysabri stopped after 24 Infusions and positive JCV antibody test, after LDN, ABX Wheldon Regime for 1 year.
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Postby Frank » Sun Jun 10, 2007 6:26 am

I'm just back from my weekly walk that went pretty good and I'm sure I
have see some improvents again.
Especially I'm not feeling exhausted afterwards and there right foots strength is increasing.

For the weeks to come I decided to fix the walking to 8.5 kilometers that take me 90 minutes to walk.
That distance is sufficient so I can definitly feel some difficulties in my gait.

The most significant symptoms after 90 minutes currently are:
- The right leg feels pretty heavy
- The right foot tends to drop to the front, but I'm still able to hold it even
when I'm walking downhills.
- During walking, when I lift the right foot up, its outer side topples down.
This symptom becomes visible after walking for about 45 minutes.

(I'm not sure if one can understand the symptoms I'm trying to
explain...)

I still tolerate all the ABX very well.
All in all this was a very good week again :).

--Frank
Treatment: Gilenya since 01/2011, CCSVI both IJV ballooned 09/2010, Tysabri stopped after 24 Infusions and positive JCV antibody test, after LDN, ABX Wheldon Regime for 1 year.
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Postby Frank » Wed Jun 13, 2007 10:11 am

I have just returned from my - once more - longest and best walk, it was 120 minutes for 11.5 km :)!

The toppeling of my right foot that became visible after 45 minutes just three days ago was not visible after 90 minutes today. At the end of the walk it was slightly noticeable.
I always walk with my dad to have an "objective" observer who also watches my gait, to keep me from beeing positivly biased.
If it would not happen to my I would barly believe it.

My leg did not feel that heavy in the end as I was used to. And currently I do not feel tired at all.

I'm feeling really really good today.

--Frank
Treatment: Gilenya since 01/2011, CCSVI both IJV ballooned 09/2010, Tysabri stopped after 24 Infusions and positive JCV antibody test, after LDN, ABX Wheldon Regime for 1 year.
Frank
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Postby Frank » Tue Jun 19, 2007 4:37 am

I'm currently slowly getting ready for my first tinidazole pulse.

As I had to find Tinidazole is not appoved in germany but my pharmacy is able to order it from Spain (takes two weeks to deliver) - a package of 4 pills a 500mg costs 9,61EUR.

I'll have to split each pill in quaters to get my daily dose of 2x 125mg.
The pills dont have a gastric acid resistent coating so dividing the pill will not affect their effectiveness.

I plan to start the pulse around the middle of july - this will be about two and a half moth after I started my ABX regime.
Considering my current state of health would you agree to do so?

One thing I have to notice is a decreased ability to handle mental stress even after short (1 - 2 hours) periods of demanding work I feel a slight dizzyness, minor headache and a tearing feeling in the back of my head.
These states get worse the longer I work.

Thanks
--Frank
Treatment: Gilenya since 01/2011, CCSVI both IJV ballooned 09/2010, Tysabri stopped after 24 Infusions and positive JCV antibody test, after LDN, ABX Wheldon Regime for 1 year.
Frank
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Sorry, Frank

Postby SarahLonglands » Tue Jun 19, 2007 5:40 am

Frank, the dose is 500mg twice a day: I'm sorry, I typed in the wrong amount. I must have been recently writing to someone about doxycycline or roxithromycin.

You might care to start with just one tablet a day for the first pulse, or just a pulse of one day because many people find the nitroimidazoles very hard to stomach. I was alright, but I had a tendency to burst into tears and get rather more fatigued than usual. One thing is for certain, it is easier to take than metronidazole and not only because you only take two a day!

You do sound like you are ready to start, though, but please go easy at first.

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 Frank » Fri Jun 22, 2007 8:42 am

Thanks Sarah, I will start cautiously...

Currently I have some strange feeling in my left lower Arm and hand - sometimes also on the right side - which first occured maybe five days ago. Its most present after I wake up. Its coming and going from day to day so I dont really think its a relapse.
It also might be something with the blood circulation.

I wanted to write it down here so I can reconstruct its course if needed.

Comparted to the previeous week I dont think I see improvements but all in all im really doing fine.

--Frank
Treatment: Gilenya since 01/2011, CCSVI both IJV ballooned 09/2010, Tysabri stopped after 24 Infusions and positive JCV antibody test, after LDN, ABX Wheldon Regime for 1 year.
Frank
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Posts: 543
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Postby SarahLonglands » Fri Jun 22, 2007 10:28 am

Frank, you'd be Superman if you felt some improvement every week. Either that or deluding yourself.

In my experience relapses were distinct and obvious and only affected one side at a time. Even when my walking became so bad that I couldn't walk unaided to our front gate, it was only my right leg that wouldn't move. You might be digging out germs from parts of you which you didn't know were affected.

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 Frank » Sun Jul 01, 2007 5:39 am

The strange feelings in my hand went away soon after my previous post.
Over the next maybe four days it came back occasionally but went away after a few hours.
Whatever it was its completly gone now since at least three days.

At the moment I feel like catching a cold but this may also be my allergy or maybe still a die off reaction.
Due to this I feel a bit weak in general which also has an impact on my walking abilities.

Additionally the weather here is completly crap. Its raining all the time since weeks and temperatures vary from day to day.
On thursday it was 17C, today we have 28C with high humidity, tomorrow its expected to be 19C - uff.


--Frank
Treatment: Gilenya since 01/2011, CCSVI both IJV ballooned 09/2010, Tysabri stopped after 24 Infusions and positive JCV antibody test, after LDN, ABX Wheldon Regime for 1 year.
Frank
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Postby Frank » Fri Jul 06, 2007 10:54 am

I will be on holidays from 07.07.2007 to 22.07.2007.
Unfortunatly I'll spent the two weeks at the northern sea, where currently the weather is really no fun (raining all the time, cloudy with temperatures aroud 18C).

My cold like feeling is a bit strange. Usually when I get a cold it hits me quite hard. Comes three days, stays three day and goes three days. I alwayse used to have all the common symptoms.
This time I feel week and my legs and muscles hurt like when you have a cold with slight fever.
But I dont have sinusitis or sore throat or cough. And the cold like feelings come and go daily.

So either its I have a cold and things go on a bit different due to the antibiotics I take, or its my allergy or still a die off reaction...

Read you in two weeks...
--Frank
Treatment: Gilenya since 01/2011, CCSVI both IJV ballooned 09/2010, Tysabri stopped after 24 Infusions and positive JCV antibody test, after LDN, ABX Wheldon Regime for 1 year.
Frank
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Postby havingms » Fri Jul 06, 2007 1:58 pm

Sounds more like a bacterial die-off reaction to me. Especially when you consider the absence of other symptoms such as sinusitis or sore throat or cough. Hope you feel better soon.
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Postby CureOrBust » Fri Jul 06, 2007 9:34 pm

when you say slight fever, have you actually checked your basal body temperature? Do you have excess mucus? I'm no doctor, so maybe you should see an immunologist and get a professional medical opinion on if it is a herx.
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Postby SarahLonglands » Sat Jul 07, 2007 3:15 am

Hi Frank, I have probably missed you and you are on vacation at the moment on the cold northern coastline. The weather there sounds very similar to what we are experiencing at the moment, completely different to last summer.

When I started on antibiotics, the nature of a cold seemed to change: I would feel like I was coming down with something, with a slight fever, achy arms and legs, yet nothing more than that would happen and the next day I would feel fine. So was it a cold or was it a die-off reaction? No idea really, but I suspect the latter.

Its too damned wet this year to be an allergy, I would have thought: pollen levels are minimal.

Sarah 8)
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 Frank » Sun Jul 22, 2007 1:51 pm

I'm back from my two weeks holidays on the norhtern sea.
Luckyly the weather was not that bad, so I could go out to the beach and barbecue in the evenings on most of the days :).

I'm still not sure what I had/still have (cold/allergy/die off). I'm not only allergic to pollen but also to moulds, which are specially active on rainy days around 20C.
I still do not feel perfect but its OK and it changes from day to day so I'm going to wait and see how it will go on...

During my holiday I was going for a walk every day.
Two times I had very good walks for two hours along the beach, bare-footed (which might have improved my outcome somehow).

To test my motor fuctions I'm always trying to run for a short distance (aprox 50 Meters with about 15-20km/h) after some time.
I'm always able to do it when I have rested but have problems after some time of walking.
When I started my ABX protocole (in April 2007) I was never able to run after I had walked for 35 minutes.
Now in my holidays I was able to do it once after 40 minutes and on an other day even after 65 minutes - thats was really great!

Additionally I saw a significant improvement in my balance on the right foot/leg.
I practice to stand on one foot in two different positions for 20 seconds each.
At least since my last more severe relapse, one and a half years ago, I had big problems to keep the balance- and that got definitly a lot (maybe 50%) better :).

I dont know if there were some conditions related with my holday stay that had an influence on my abilities - like no stree, different climate, I ate very much fish etc.
The fact that at the same time two things have improved that much might seem a bit suspicious but I will see that over the next weeks.

--Frank
Treatment: Gilenya since 01/2011, CCSVI both IJV ballooned 09/2010, Tysabri stopped after 24 Infusions and positive JCV antibody test, after LDN, ABX Wheldon Regime for 1 year.
Frank
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Posts: 543
Joined: Wed Jan 03, 2007 3:00 pm
Location: Germany

Postby SarahLonglands » Mon Jul 23, 2007 10:00 am

What, you mean that you were on the North German coast and you could have barbecues most evenings? In the UK we have had nothing but rain, and much of the south seems to be flooded.

It will be interesting to see how much of your improvements are due to the stress free holiday and how much stays with you now that you are back, but I'm glad you had a good time.

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 Frank » Wed Jul 25, 2007 12:07 pm

Today I started my first pulse.

I take 500mg Tinidazole ( Tricolam(r) ) in the morning, together with my first Minocycline dose.
I think I tolerate it pretty well so far. Just some pressure in my stomach like I had when I started with Mino but it got better throughout the day.

As I read in the regime description one usually starts with a one day pulse.
So far I believe I could do a complete five days pulse.
Do you think it would be better to stick to a one day pulse for the first time or would it be OK to go for the whole periode if I tolerate it well?

Thanks

--Frank
Treatment: Gilenya since 01/2011, CCSVI both IJV ballooned 09/2010, Tysabri stopped after 24 Infusions and positive JCV antibody test, after LDN, ABX Wheldon Regime for 1 year.
Frank
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Posts: 543
Joined: Wed Jan 03, 2007 3:00 pm
Location: Germany

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