Frank ABX diary

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

Postby Frank » Sun Sep 09, 2007 9:57 am

This week was not particularly well.
My ankle is still not ok - I will have an appoitment with my orthopedist the coming friday.

On Monday of the previous week I started to get a slight cold - nothing big, but I still feel a bit miserable.

I began to walk shorter distances (50min) again since three days.
Its not going too well.
I mostly blame it on the cold that I had, but it may also be due to the weather, which is getting really like autumn (13 degree Celsius and rainy).

--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 Dovechick » Sun Sep 09, 2007 10:22 am

Sorry to hear that you are still suffering. If this ankle problem is related to the treatment it could take a while to get better. It is depressing to appear to be going backwards, but this is to be expected with this treatment.
In time you will reap the benefits of your patience and courage. :?
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Postby Anecdote » Sun Sep 09, 2007 11:31 am

Its a torn ligament, isn't it? They are a bugger, I know from experience and if you put too much pressure on it, it will take longer to heal.

Also, Autumn comes earlier to Berlin than to us, but it isn't my favourite season!

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 MacKintosh » Sun Sep 09, 2007 6:32 pm

If it'll help your outlook, such things happen even to us 'veterans'. A cold will heighten symptoms you barely notice anymore, probably because it diverts your immune system to the immediate problem.

And I, at twenty-three months on abx, really don't have a reaction to flagyl pulses anymore, yet the past two days I've had nagging 'memories' of old symptoms from two years ago: a bad knee, aching muscles, more tired than usual. After a high dose, six day, flagyl pulse, I know it's a good die-off effect, having experienced this before, but it makes you a bit nervous even when you know it's a good thing. There are just going to be times that are tougher than others and you just have to push through them. It'll be okay.
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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Postby Frank » Mon Sep 10, 2007 1:26 am

Thank you all :).
It is indeed a bit dicouraging to see thing can also get worse sometimes, even though I know it would be naive to think it will just continously get better and better.
Together with the torn ligand (actually I dont think it is torn appart againg, its "just" an old injury that became somehow active again), it makes me a bit impatient. But I know that its not rational to be.

Anyway I don't feel that bad and hope for better times to come.

--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 MacKintosh » Mon Sep 10, 2007 9:00 am

Oh, an old injury! Yes, antibiotics do address the sites of old injuries. It doesn't mean you reinjured it, just that any cpn lodged there (from when the white blood cells raced to the injury site to help repair it) is being attacked. You may feel bad, but good is being done.
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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Postby Frank » Mon Sep 17, 2007 6:22 am

I had my date with my orthopedist on friday. The torn ligand was visibly irritated on the ultrasound device.
I get magnetic field therapy and diclofenac pills. It already got much better.

My blood test reveald nothing negative. Only my CK level was on the upper normal level (195).

All in all I do feel much better again. Conspicuously the improvements came together with four days of warm and sunny weather...

I will be scheduled for my annual routine MRI on friday.

Today I started my 3rd 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 Frank » Wed Sep 26, 2007 6:19 am

During the pulse I felt some pain in my hips joints again. Apart from that everything went fine.

My ankle gets better but is still not OK so my physical activies are limited.
The small walks I'm able to take (about 50 min) do not go as well as in summer, but its not getting worse anymore.

The results of the MRI (Compared to MRI of 10/2006) showed no new lesions and no change in known lesions :).
Thats a very pleasing result, though my MRI activity used to be pretty low over the past few years.
The latest new lesion came up in 03/2003. This last lesion was increased in size in 10/2005.

--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 MacKintosh » Wed Sep 26, 2007 6:32 am

Frank, This all sounds great! You're doing well.
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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Postby Katman » Wed Sep 26, 2007 6:38 am

Frank, the main thing that caught my eye was hip pain. I am 67 years old and was getting very arthritic, especially my hips, shoulder, and neck. After lots of pain for months during pulses and days and days afterward, it is gone now. As my husbsand, a pediatrician, says: this is not supposed to happen. Stay with it - I believe you will be happy that you did.

Rica
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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Postby robbie » Wed Sep 26, 2007 6:49 am

Katman i did not know that EDSS came in decimal points but how long were you at 6.7
Had ms for over 19 years now.
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Postby Dovechick » Wed Sep 26, 2007 7:02 am

Robbie, This is a great start. I hope everything continues to improve for you. Walking for 50 mins in no mean feat and a status quo on the MRI scan must be a result.
Way to go...
Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.
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Postby robbie » Wed Sep 26, 2007 7:18 am

Robbie, This is a great start. I hope everything continues to improve for you. Walking for 50 mins in no mean feat and a status quo on the MRI scan must be a result.
Way to go...

not sure what you mean i have had no improvements.
Had ms for over 19 years now.
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Postby Katman » Wed Sep 26, 2007 7:27 am

When I next went to the neurologist who gave me that score I was already getting better. I excitedly showed him that I could lift my leg which previously would not get off the floor no matter how much effort went into it and he responded only with several remarks: I expected you to be much worse (I am PPMS), don't come back, (I had stopped Avonex), and at my push, gave me a grudging new number 3 to 3.5. There was no indication of how he felt about my antibiotics except: I don't want to see you any more.
But every day before I was beginning to improve, I was fast getting worse. My mind was also getting more and more foggy. I will need to research my old blogs to answer thae question about length of time, because I can't really remember. I think it would be between 14 and 16 months.

Rica
Last edited by Katman on Wed Sep 26, 2007 7:32 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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Postby Dovechick » Wed Sep 26, 2007 7:28 am

Not getting worse, no increase in your MRI activity, ankle getting better ( I know that it was injured, but often a pulse can make an injury feel worse, especially a recent injury). To me that looks like good news.
When Ella got to a point of stability we felt that this was progress as she was able to do the pulses without loosing more physical abilities.
When she first started the pulses she had to contend with loss of power and dexterity in her right hand, increased fatigue and more bladder/bowel problems.
Hopefully improvements will follow your great start...
Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.
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