EDSS IMPROVEMENT from any REGIMEN?? -- FROM, TOO

Tell us what you are using to treat your MS-- and how you are doing.

EDSS IMPROVEMENT from any REGIMEN?? -- FROM, TOO

Postby viper498 » Sat Jan 21, 2006 8:55 am

I was just curious if anyone would kindly post the following information:

MS Stage (RR, SP, PP, B) =

Regimen =

Length of Time on Regimen =

EDSS before Regimen =

EDSS after Regimen =


I want to see if anything is really working. There is so much content on this site it would take a very long time to read all of it.
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Postby LifeontheIce » Sat Jan 21, 2006 9:27 am

Stage in Nov, 2002-secondary progressive

Regimen- Lipitor 80 mg since Nov, 2002 LDN started May, 2004

Lengh of time- till Feb,05

EDSS before 5.5

EDSS after less than six months on Lipitor 0

I am on the Wheldon's protocol since Feb, 2005. At present thinking and memory finally normal.
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Postby bromley » Sat Jan 21, 2006 9:37 am

Ice,

Your results on Lipitor look impressive. Can I ask two qs:

- If results on Lipitor so good, why go to abx (are you still on Lipitor?)
- Did anyone take notice of your improvements on Lipitor? e.g. Neuro


Ian
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Postby SarahLonglands » Sat Jan 21, 2006 9:49 am

MS Stage (RR, SP, PP, B) = Aggressively SPMS August 2003

Regimen = Doxycycline, roxithromycin, pulsed metronidizole, swapped doxycycline for rifampicin fr six months.

Length of Time on Regimen = one year full-time, one and a half years on intermittent therapy

EDSS before Regimen = about 7

EDSS after Regimen = about 1.5 and still improving.

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 LifeontheIce » Sat Jan 21, 2006 10:55 am

Bromley, the EDSS does not take into consideration a patient's mental aptitude. I started the antibiotics because if they worked, one might expect a cure at a certain point. With Lipitor the end of the therapy would be my death of liver failure. My thinking and memory is very close to what it used to be, I will try to see if I can regress to my prepubertal levels.
My only visit to my neuro was almost a year later when I went to brag to him about my two MRIs, done six months apart. You bet, he noticed, but he did not believe Lipitor could be the reason. I am planning another MRI next month. I will see him afterwards for sure.
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Postby bromley » Sat Jan 21, 2006 11:13 am

Ice,

Thanks - I only asked because I see that Lipitor is currently in trial as a possible MS treatment and other have reported benefits using statins. I'm not sure what statins do in terms of MS - modify the immune system or neuro-protective?

Good luck on the abx. I would love abx to be the answer - it's just typical of ms that there's no easy test to show whether cpn is in your CNS or not.

Ian
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Postby LifeontheIce » Sat Jan 21, 2006 11:46 am

My test for the cpn was negative which of course does not preclude having infection. I recently read that only one percent of people with end-stage Lyme disease test positive for it. I spent all my chidhood vacation climbing trees in different forests and later picking out ticks, sometimes I was only partially successful.
That regimen I am on essentially kills everything except impossible, I am lucky to tolerate it as well.
http://aac.asm.org/cgi/content/abstract/49/9/3959
Last edited by LifeontheIce on Sat Jan 21, 2006 11:54 am, edited 1 time in total.
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Postby Katman » Sat Jan 21, 2006 11:51 am

MS stage: PP 10 years- beginning of disease was July, 1995

Regimen: Beginning Sept. 22, 2004 -
Rifampin 300 mg. 2x d,
Doxycycline 100 mg 2x d,
Zith added Aug, 2005- 250 mg MWF

Flagyl 375 mg 3x d for 5 d
every 3 weeks (March, 2005 I was off ALL abx
because of LFT rising dangerously, later traced
to Avonex, which I stopped using in Dec 2005)

I have completed 16 mos. and am beginning on my
17th of abx still seeing major improvement.

EDSS then In June, 2005 at my request for a number my
score was "at least 6.7- but I expected you to
be much worse". Great encouragement.

EDSS now Dec. 2005 My number was 2.5 (3 pm after
running around since 6 am)

Hope this helps any of us miserable people with MS. It has given me back a life I love.

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 viper498 » Mon Jan 23, 2006 2:54 pm

Thank you everybody for your posts so far. I am going to track the information and determine what seems to have the most success. I was particularly amazed by the recovery on the Lipitor!!??
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Stratton/Sriram Case Reports from patent

Postby Jimk » Sun Jan 29, 2006 5:40 pm

I've posted a summary of case findings from the Stratton patent materials which includes cases of MS and some with EDSS score changes. Might be relevant for your thread here.

http://www.CPn Help.org/?q=Stratton-MitchellCaseReports
On Wheldon/Stratton protocal since December '04 for non-MS Cpn: CFS/FMS
Ohio, USA
www.CPn Help.org
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Postby beyondms » Sun Nov 12, 2006 8:47 pm

I am amazed at some of the posts on this thread and I will share them with my neurologist. I am off Avonex since early July. I started taking minocycline for some acne on my back and now my dermatologist suggested I take doxycin (100 mg before bedtime). He told me that doxycin is better in terms of its anti-inflamatory effects.

Now, reading some of the posts, I see most people have a regiment where they take 100 mg of doxycin twice a day along with other abx.

I am not sure about Lipitor but it seems to me that abx are very powerful and have helped many here.

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Postby SarahLonglands » Mon Nov 13, 2006 12:58 am

Hi BeyondMS,

The dose of doxycycline for MS is 200mg a day, but some people take it as 100mg twice a day. Then you add a macrolide, either azithromycin or even better roxithromycin, which I think you can get in Canada. Some people take statins as well, but I don't. The trouble is they are more likely to harm your liver. You can find out more in the Regimens section and also, of course, the Antibiotics section. The excellent site http://www.CPn Help.org is also a good place to look but probably the best starting point is here:

http://www.davidwheldon.co.uk/ms-treatment.html David is my husband and the person who treated me.

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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My Adventures in MS - cont.

Postby Katman » Mon Sep 03, 2007 12:16 pm

As usual for me these days, it has been a very long time since I posted on this site. My beginning and middle stories are on ThisisMS under "My Adventures in MS". I am approaching my 3rd anniversary on 3 antibiotics and the many supplements listed on Davic Wheldon's site. My neurologist told me to go away and not come back when I was so improved 21 months ago. From being on a cane and sometimes a walker and not being able to get my right foot off the floor and total chronic exhaustion, I drove 10 of our goats and myself 4300 miles to the Dairy Goat Nationals in Gillette, Wyoming for a 15 day adventure. I did all the huge amount of work, including spending show day for our breed in 5 classes. Yes, this regimen definitely works!
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 gwa » Mon Sep 03, 2007 3:04 pm

katman,

How long had you had MS before starting the ABX therapy?


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Postby Katman » Mon Sep 03, 2007 5:25 pm

The event that precipitated my MS happened in 1995 when an incident put me in the hospital, septic, for 5 days. When I went home to recuperate, I developed shingles, finally semi-recovered from that, and was almost totally numb from mid-ribcage to my toes in the right from then on. To describe it to the doctor, I said "I could skin myself and I would feel nothing". Finally, I was diagnosed in 2004, went on Avonex (which did no good), and Doxycycline and Rifampin, (which did, though I didn't know it for 9 months). I now have 90% of the feeling back on my right side.
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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