Mamahawk's Regimen

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

Postby mamahawk » Fri Oct 19, 2007 12:46 pm

Hi Robbie,
I just posted this in the Antibiotic forum, tells most of my story:

2005 I suffered from extreme fatigue - hadn't really felt good in several year..... passed it off to life stress, etc.

October 2005
I developed patchy blindness in both eyes. MRI revealed 20 brain lesions (3 active & angry), & 1 spinal lesion. Spinal positive for OCB. Methyl Malonic Acid (assoc. w/B12 deficiency) was sky high (>550). They gave me IV Steroids for 5 days and started me on Copaxone (they recommended Avonex but I chose Copaxone).
I researched online and found the "Best Bet Diet" and began that strictly (continued that for 9 months without any "cheating") - also started an extensive regimen of supplements and vitamins.
Eyes recovered after 4 weeks of being unable to drive or read.
November 2005
I developed severe tingling in my lower legs and lower arms (stocking-glove), a night I would wake with my entire body buzzing, and my left hand began to lose strength and function. I continued to have debilitating fatigue.
December 2005
Some improvement with the diet, began Naltrexone (LDN) at the recommendation of my Neuro to try and stop the tingling which was driving me mad. Fatigue very high. Quit Copaxone due to multiple site reactions and minimal improvement.
February 2006
Some improvement in the tingling - had read about abx at this point and talked to Neuro and after signing a waiver, he agreed to prescribe.
Doxycycline 200mg - Fluish reaction, felt yucky, subsided within a week or two.
March 2006
Started Azithromycon 250mg - don't remember much reaction.
Began to feel better finally - fatigue lessened, mental fog cleared very quickly.
May 2006
Started Metronidazole 500mg - Ahhh man within an hour of taking the first pill thought I was going to DIE. Had to stop after 3 days of being unable to get out of bed for more than an hour at a time, felt utterly poisoned. Excessive clear nasal discharge, night sweats, chills - YUCK.
Continued pulses of Metronidazole - 5 days at a time, once a month.




So it has only been 2 years since diagnosis... but I haven't felt well for probably 5 years - and as a teen I was diagnosed with Chronic Fatigue Syndrome - which I'm wondering if it could have been the start of a Cpn infection?

I will continue to take LDN - as it boosts endorphins/fighter cells... and that walks hand in hand with the Cpn theory.
Not sure how long I will continue the Abx - but it most definitely was at least a year before all of the tingling disappeared - and only the past 6-8 months that I have felt the level of energy I now have....
Last year I couldn't garden or walk for long periods without paying for it for days.

Honestly - I feel better than I have in at least 6 years or more...
Dx MS 10-05, multiple symptoms. MRI 20 brain lesions (3 enhancing), 1 spinal lesion, positive spinal, MMA>550.
Started: LDN 12-05, Wheldon CAP: Doxy 2-06, Azith 3-06, Flagyl 5-06.
Now: All is well, no symptoms! 4/2010
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Postby mamahawk » Fri Oct 19, 2007 12:54 pm

Forgot to add - I almost feel guilty saying I feel so well when others are not feeling it, too...
But I went through hell getting here. The Flagyl pulses for me were terrible. Many of them, I would lay in bed actually moaning because I felt so awful and could not get away from it. Nothing I did made it better - it came and went, and was worse if I was more active - so laying in bed was what I did alot.
I wanted to quit - I wanted to give up... but I also wanted to see if they got better - because if they did, that would mean (to me) that maybe there were organisms in my body that were dying and the less die off (fewer there were) the better I would feel during the pulses.... so I kept it up - and DARNED if the last one was EASY.
Seriously - I barely had any reaction at all. I need to start a new one this weekend, and I can only hope that it is as easy as the last one.

Unbelievable to me to have such a strong reaction and feel SO ill - and now to have little if any reaction. SOMETHING has changed....
Some may say I have a tolerance to it?
I don't see how that's possible only taking it once a month.
I don't see why it would be such a drastic change in reaction.

Placebo effect?
Ok...
But then my MRI's wouldn't correlate... and they do.


I wish you much luck.
It is horrible to "not know" what is coming next - to not know if what you are doing is helping or hurting.... to not know if in a year you will be wheelchair bound. I still have fear.
I have an uncle who has been bedridden with MS for over 20 years - he cannot even feed himself.
I know fear.

But I FEEL great... and while it didn't happen overnight - it did happen.


Best of Luck~~
Dx MS 10-05, multiple symptoms. MRI 20 brain lesions (3 enhancing), 1 spinal lesion, positive spinal, MMA>550.
Started: LDN 12-05, Wheldon CAP: Doxy 2-06, Azith 3-06, Flagyl 5-06.
Now: All is well, no symptoms! 4/2010
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Posts: 67
Joined: Wed Dec 28, 2005 4:00 pm

Felt so great I slacked on my meds :(

Postby mamahawk » Wed Mar 19, 2008 9:25 am

I wrote the above post in Oct, then did a pulse in November.... then got busy and was feeling so great, that I didn't pulse again, and pretty much stopped taking vitamins....
Saw my Neuro 2 weeks ago and was proclaimed "boring" and no issues.
Then all of a sudden this week had a return of tingling and a new numbness/weird sensation across the top of my shoulder.

Ugh.
Teach me to slack.

So now I am pulsing again since Sat 2am and feeling quite ill for most of it (although things are good right this very minute!)
Hoping this shoulder thing disappears very quickly.
4 more pills to take and then done for another month.
Dx MS 10-05, multiple symptoms. MRI 20 brain lesions (3 enhancing), 1 spinal lesion, positive spinal, MMA>550.
Started: LDN 12-05, Wheldon CAP: Doxy 2-06, Azith 3-06, Flagyl 5-06.
Now: All is well, no symptoms! 4/2010
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mamahawk
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Posts: 67
Joined: Wed Dec 28, 2005 4:00 pm

Postby SarahLonglands » Wed Mar 19, 2008 9:46 am

The memo for your post came through just as I was logging off after doing a reply to you in the antibiotics forum. I didn't know how you had managed to reply that quickly! :o

Best read my reply there, but this is so like what I went through, I'm sure you will be OK.

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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Location: Bedfordshire UK

Postby mamahawk » Wed Mar 19, 2008 1:18 pm

Thanks Sarah!
Dx MS 10-05, multiple symptoms. MRI 20 brain lesions (3 enhancing), 1 spinal lesion, positive spinal, MMA>550.
Started: LDN 12-05, Wheldon CAP: Doxy 2-06, Azith 3-06, Flagyl 5-06.
Now: All is well, no symptoms! 4/2010
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mamahawk
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Posts: 67
Joined: Wed Dec 28, 2005 4:00 pm

Postby mamahawk » Tue Jun 17, 2008 6:54 am

Well, I'm pulsing again - and the left shoulder/arm/hand thing is over. It lasted a long time though... 8-10 weeks?

It started in my left shoulder, and slowly moved down my arm until it reached the tip of my thumb and stayed there for several weeks.... it was so odd. It was never my whole arm - just a patch of sensory distortion/numbness that moved slowly down my arm, and there was never any loss of function, just sensory issues.

Whether it was MS related and a true exacerbation (I didn't have any fatigue or other problems during it) or due to the prolapsed disks in my neck (which they say are supposed to be causing left arm radiculopathy)... who knows.

This pulse has been the easiest ever... so for that I am grateful!
Dx MS 10-05, multiple symptoms. MRI 20 brain lesions (3 enhancing), 1 spinal lesion, positive spinal, MMA>550.
Started: LDN 12-05, Wheldon CAP: Doxy 2-06, Azith 3-06, Flagyl 5-06.
Now: All is well, no symptoms! 4/2010
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mamahawk
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Posts: 67
Joined: Wed Dec 28, 2005 4:00 pm

Postby SarahLonglands » Wed Jun 18, 2008 11:00 am

Hi Mamahawk, glad the shoulder/arm/hand thing is over, but I think you may have answered your question about it yourself, with you mentioning the prolapsed disks in your neck, although I wouldn't rule out RSD because it sounded very like mine, which gradually diminished over several weeks, but involved more pain.

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.
SarahLonglands
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Posts: 2111
Joined: Thu Jun 17, 2004 3:00 pm
Location: Bedfordshire UK

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