Frank ABX diary

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

Postby SarahLonglands » Wed Jul 25, 2007 3:06 pm

Up to you really: I did a full five days, full dose, first time. If you feel you can tolerate it, carry on, knowing that you can stop anytime you think you have had enough.

Sarah :wink:
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 » Thu Jul 26, 2007 10:31 am

When I took the fist dose yesterday I thought I didnt notice any reaction, expect from my stomach. My stormach is much better today, I hardly notice it.
Instead, today I feel very tired again (compareable to like I was when I began with the Mino).

It does not bother me too much its just that I dont feel like I want to do anything but get some sleep...

--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 SarahLonglands » Thu Jul 26, 2007 3:17 pm

Metronidazole and tinidazole do have this habit of making you very sleepy, at least at first! Are you going to carry on for longer? I found that I didn't experience much, the first time around, or the second, come to that. Other people have found otherwise, though. The full dose is 500mg twice a day.

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 Jul 27, 2007 1:42 am

If I dont experience any serious "negative" effects I'm going to do the whole 5 days.
Tomorrow I plan to go up to the full dose...

--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 » Mon Jul 30, 2007 2:00 pm

My first pulse is finished now. I took 3 days 1x 500mg and 2 day 2x 500mg (mornings and evenings).

During the pulse I was constantly very tired.
On the days I took the full dose I had a significant exacerbation of my numb feeling in my fingertips of both hands. This is an old symptom (maybe since 6 years) but its usually not noticeable. It is usually getting temporary worse when I'm generally feeling bad (common cold, bad stress etc.).
Now that I have stopped Tinidazole today the tiredness and numbness are still present.

Yesterday I was on my weekly walk, my motor functions were noticeably worse than on the weeks before (especially compared to my vaccation walks) but I was able to go for 90 minutes.

Would you regard this as a desired die off reaction or should I rather change the Tinidazole dose on my next pulse?

--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 SarahLonglands » Mon Jul 30, 2007 2:49 pm

Hello Frank, reading many other people's reports, this is a totally normal reaction to tinidazole or metronidzole. I don't know how much my walking was impacted in those early days because I wasn't able to do much anyway. I was concentrating on getting my right arm working again.

I think you should just carry on the way you are, all seems to be going fine!

I wish a few other abx people would come along and say something: they all seem to be fully occupied at CPn Help.

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 Aug 01, 2007 3:45 pm

Since yesterday the numbness in my fingers got gradually better. Today its aprox. 60% reduced compared to the peak.

Today is the first day I didnt have to sleep during the day, I rather feel very awake today - its 0:30 am and I dont really feel like going to bed.

I still feel somehow beat up but hopefully this will vanish over the next few days...

--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 » Thu Aug 02, 2007 1:48 pm

Today, for the first time since maybe 2 month, I experienced some brainfog after walking for about 45 minutes...

Its not a big thing, I just want to write it down to keep track of my course.
My fingers may be a bit better 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.
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Postby SarahLonglands » Thu Aug 02, 2007 3:15 pm

Well, one day you don't feel like going to bed, the next you get brain fog. You don't think the two may be linked? :?
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 Aug 03, 2007 2:58 am

Hmm, yes there may be a link. :)

--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 » Sat Aug 04, 2007 8:17 am

This weeks walk (120min) was better than the week before, but not as good as I did during my holidays.

But one very good thing happed :). Its four days now since I realised that I no longer have a tickeling feeling in my feet when I pull my chin to my chest. I hasited to report it because I wanted to make sure its not just a short transient improvement.
Literaly translated the symptoms name would be something like pyramidtrack signs (I dont know the correct english word for it - sorry).
This is a very old symptom of mine. It was first documented in 12/2003 but I'm pretty sure I already had it before.
As far as I can remember it never went away or became significantly better in the past.

My fingers are still not as before the pulse but I think they are getting better slowly.

--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 SarahLonglands » Sat Aug 04, 2007 10:18 am

Frank, I speak French and Italian, not German, but what I think you are referring to is known in English as "L'Hermittes sign!" It is normally a feeling in the spine, but it can go down to the feet or only affect the feet. I was just starting to develop it before starting antibiotics, as the lesions which had previously only been in the brain started to spread along the spinal chord. It can go in the normal course of the disease as demyelinated axons in the spinal chord die, but in your case it seems rather unlikely since you have had it for so long that it should suddenly go so soon after starting abx, when you re also showing other signs of improvement rather than getting worse.

When mine went, I would still for a while, when very stressed or tired, get a slight feeling of this, which would vanish again as quickly as it came, but it has now been well over a year since I experienced this partial return.

Sarah :D
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 MacKintosh » Sat Aug 04, 2007 10:54 am

Frank, This all sounds very promising! I must go back and read from the beginning, then will comment further. Good for you!
The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi
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Progress

Postby mormiles » Sat Aug 04, 2007 11:32 am

Hi Frank, I've been reading your diary along the way, but I haven't commented. I started the protocol myself almost 3 months ago for non-MS reasons. My major symptom has been fatigue, and as a result, I've been much more a reader than a commenter.

Having read many CAP experience posts over the past 16 months, I would say the ins and out of your experience are par for the course. You have a long way to go on the journey. One of the most difficult challenges is to not be in a hurry. You seem to be doing very well. Don't be afraid if you have symptom exacerbations---they are CAP-related and temporary. You were very brave to make the choice to do the CAP; it also requires bravery to stay steady through the difficult times. It pays off, though, and you are one of the hardy ones who will get throught it.

I expect to do my first flagyl pulse next weekend (3 total 375mg doses over a 24 hour period). I'll be thinking of you since you did yours just before me. Best wishes, Joyce
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Postby Katman » Sat Aug 04, 2007 1:05 pm

Hello, Frank
Another one on abx here. I almost never visit this site but saw your diary (haven't read it all yet but will soon) and have to add my congratulations to the rest. My advernture with this protocol is almost three years now and, like you, I have experienced the loss of many enemies called symptoms. My progress continues, sometimes with huge setbacks, which I now interpret as precursors to more improvement. It sounds like you are doing well and I strongly encourage you to stay with it even though there will very likely be times when you want to say "I can't do this anymore - it isn't working!" Two good reasons I say this are: 1) one day you wake up and realize you can do things you thought were long gone - as has already happened - and 2) the alternative is lots, lots worse. My best to you.
Last edited by Katman on Sun Aug 05, 2007 11:40 am, edited 1 time in total.
2010 5 years 4 months Now on Amoxicillin, Doxy, Rifampin, Azith, and caffeine in addition to  flagyl. 90% normal good days-50% normal bad days. That is a good thing.
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