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MacKintosh
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PostPosted: Wed Sep 26, 2007 8:30 am 
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Robbie, Very few (like nobody) see dramatic improvement in two weeks, especially when not even on the full protocol. You've a way to go yet, but your beginning sounds promising.

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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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robbie
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PostPosted: Wed Sep 26, 2007 8:41 am 
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Quote:
Robbie, Very few (like nobody) see dramatic improvement in two weeks,

Trust me I am not expecting any dramatic results after 15 years of this shit. Just something, but like everything with ms only time will tell.

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MacKintosh
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PostPosted: Wed Sep 26, 2007 9:05 am 
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Actually, I think that's a good attitude. I've always said we can't be disappointed if we have low expectations. So, when improvements sneak up on you, you'll be pleasantly surprised! :wink: I know I was.

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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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Katman
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PostPosted: Wed Sep 26, 2007 10:21 am 
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But of course we have low expectations - we were told that when we were diagnosed. Also but - even when we are looking for them, improvements sneak up on us when doing abx - for me, it has been three years and they still come.

Rica

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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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Frank
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PostPosted: Wed Oct 03, 2007 7:39 am 
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My torn ligand is becoming a real annoyance. After stopping the voltaren pills the ankle got swollen again and does now hurt more than before.

I've had an MRI done of it yesterday, which showed that the torn ligand was (after the original injury) never reconnected (by scar tissue) again.
So, especially with my bad right side due to MS, the left foot has to handle some extra burden. That led to a little structural desitegrity in the left foots joint.

My orthopedist is on holiday for the rest of the week, so I'm scheduled for monday. I'm affraid it will finally result in a surgery with subsequent 6 weeks in plaster :x.

--Frank

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Treatment: CCSVI both IJV ballooned 09/2010, No DMDs, Tysabri on hold after 24 Infusions, after LDN, ABX Wheldon Regime for 1 year.
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MacKintosh
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PostPosted: Wed Oct 03, 2007 3:59 pm 
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Oh, God, that stinks. I'm trying to be upbeat here and so I'll say 1) at least the ankle will finally be properly attended to, and 2) they like to give lots of antibiotics relative to surgery, so your protocol shouldn't be affected by this turn of events!

I really am sorry to hear about the prospect of surgery, It's never fun. You should get it out of the way before the holiday/ice/snow season, though.

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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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Anecdote
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PostPosted: Thu Oct 04, 2007 5:13 am 
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Oh, Frank, what a mess! Thats all you need really, so very best of luck with it.

Sarah :)

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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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Frank
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PostPosted: Sat Oct 13, 2007 7:03 am 
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I'm currenty waiting for my potential surgeron to come back from his holidays next monday. Hopefully I can get an appointment withing the next two weeks...

Regarding my MS related state I'm afraid my gait is much worse compared to my "top shape" in summer.
Today I was walking for 35 minutes and I felt worse than in summer after 90 minutes. I dont really think its a relapse because I also noticed that kind of worsening in fall in the years befor. And my MRI showd no exacerbation.

But it may indicate that the improvements I had in summer are - in my case -"usual" ups and downs throughout the seasons.

--Frank

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Treatment: CCSVI both IJV ballooned 09/2010, No DMDs, Tysabri on hold after 24 Infusions, after LDN, ABX Wheldon Regime for 1 year.
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Frank
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PostPosted: Thu Oct 18, 2007 2:22 am 
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I met my surgeron on monday and I'm beeing scheduled for surgery on october 30.

Since monday I'm on my 4th pulse.
Everything is going fine, I dont even feel any pain in my hips joints this time.

--Frank

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Treatment: CCSVI both IJV ballooned 09/2010, No DMDs, Tysabri on hold after 24 Infusions, after LDN, ABX Wheldon Regime for 1 year.
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MacKintosh
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PostPosted: Thu Oct 18, 2007 5:55 am 
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Is the surgeon okay with continuing the regimen while you are under his care? That's such good news! (The lack of pain, not the surgery date.)

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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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Anecdote
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PostPosted: Thu Oct 18, 2007 6:54 am 
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Excellent Frank, both the lack of pain in the hips and the imminent lack of pain from your ligament. Maybe winter will turn out better than you thought. Well, I'm ignoring the plaster here, though :?

Sarah

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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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notasperfectasyou
 Post subject: Thank you!
PostPosted: Fri Oct 19, 2007 10:58 am 
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Frank wrote:
Here is a list of the improvements I have seen:
-----------------------------------------------------------

-- The stability/strength in my right foot got better (aprox. 30%).

-- My right leg became really heavy after walking for an hour (comparable to a healthy person who would mount 3kg around his ankel), that got better (aprox. 40%)

-- I can walk much further. When I started the maximum distance I managed to walk was 70 minutes at about 5km/h. Now I am able to walk for 120min at about 6km/h and feeling better afterwards.

-- When I started I was not able to run after 35min of walking. Now (I tried it today), I can run (not long and not that perfect) after 45 minutes even after 65 Minutes I could run even though I clearly felt a motoric handicap.

-- I used to feel a moderate fatique after longer walks or similar workout, that is nearly gone now.

-- Spacticity (which becomes evident after waking up or when I sit for a long (1 hour+) time) impoved noticeable - this might get worse again when it gets colder outside.

-- L'Hermittes signs in my feet improved, though I think it has been even better when I reported that impovement about a week ago.

-- Regarding the balance I'm not sure. I was doing pretty good during my holidays. I think I'm still a bit better when I'm trying to stand on one foot, but my walking balance might sill be the same as when I started with the ABX.

--Frank


Frank,

I printed up your entire thread and have been reading it all week. I was very excited to read this post and I want you to know that I think its a great thing you're doing keeping this record for everyone and folks like me. It's very much appreciated.

I hope your foot surgery goes flawlessly for you. It's good that your ABX won't be impacted.

I wanted to check with you to see how Tinidazole (2x 500mg per day) is different than Metronidazole (3x 400mg per day). Is one more effective than the other?

I also picked up that Roxithromycin (2x 150mg per day) is more tolerable than Minocycline or Azithromycin.

Do you know if there are substitutes for the Doxycycline too?

ciao, Ken

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Understanding MS 101: Doctor Talk and People Talk<br /><br />
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Frank
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PostPosted: Fri Oct 19, 2007 12:22 pm 
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Hi Ken,

I'm on Tinidazole (2x500mg) from the beginning so I dont have a personal opinion about that.

On cpn-help.org I read a thread (http://www.CPn Help.org/flagylvstinidazole) that compared these two drugs and some people came to the point that Metronidazole would be more effective, though - as far as I know - it is not proven.

As I do, some people substitute Doxycycline with Minocycline.

--Frank

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Treatment: CCSVI both IJV ballooned 09/2010, No DMDs, Tysabri on hold after 24 Infusions, after LDN, ABX Wheldon Regime for 1 year.
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Frank
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PostPosted: Sun Oct 28, 2007 8:26 am 
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I'll be going to hospital on tuesday morning and expect to be back on next monday.
I got my laptop stuffed with some good TV series (24 Season 5, Lost Season 3) to get the time passed :).

Regarding my MS nothing much has changed. Currently my favoured walking distance is around 45 min...

--Frank

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Treatment: CCSVI both IJV ballooned 09/2010, No DMDs, Tysabri on hold after 24 Infusions, after LDN, ABX Wheldon Regime for 1 year.
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MacKintosh
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PostPosted: Sun Oct 28, 2007 2:34 pm 
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Frank, Good luck on the surgery. Let us know when you're back home!

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