Mamahawk's Regimen

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

Postby mamahawk » Tue Feb 06, 2007 4:09 pm

Rica Thank You!
I'm posting here for myself (a record of the regimen) and... for others - to read like I did when I first was diagnosed and was desperate for something - looking for something hopeful, needing to hear what they went through and what was working or not working.

But having encouragement and feedback from someone like you who has been on this path longer than I have - that's just a great bonus!

Thank You :)
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Postby SarahLonglands » Thu Feb 08, 2007 10:22 am

I second Rica on her admonition to take some supplements, especially adequate amounts of Vitamins D and B12 and a good supply of antioxidants. I made this list for people who balked at the amounts in some lists and David now uses it for some of his patients reluctant to take anything:

http://www.avenues-of-sight.com/06-10-14-vitsetc.doc

Several things are combined, all are from good quality sources and all are bought from the same relatively good value place, to make things easy.

Apert from this, you are doing very well, and you have been very sensible to start so soon after diagnosis.

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 mamahawk » Mon May 21, 2007 3:19 pm

Hello!

Just popping in quick to say - all is well!
I am on day 4 of a pulse - have carried out normal day-to-day activities, not sick like I used to get. A few bouts of feeling yucky - but passed fairly quickly.

Will I know I'm done when I don't get sick at all during a pulse??
It has been since Feb 2006 for the Doxy/Azith and 1 year on the Flagyl.

See my neuro in July~~
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Postby SarahLonglands » Tue May 22, 2007 3:53 am

Ah, I wondered where you were!

I went onto intermittent therapy, two weeks every two months, now every three months, after about a year because I had stopped getting reactions to metronidazole pulses, some people carry on for much longer, though, because their bodies seem to take longer to clear everything out. You might care to do this for a couple of years, knowing that you can always restart if you feel any symptoms coming back. It might not be necessary at all, but at this stage not enough is known about the pathogen. The general idea, though, is that you should carry on taking NAC as a supplement because this will guard against reinfection.

I haven't had a single MS episode since starting treatment and I am still slowly improving even between intermittent courses of abx. I could maybe stop altogether now, but quite honestly I am frightened to, having been so bad when I first started. You are lucky because you weren't like that.

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 mamahawk » Tue May 22, 2007 4:32 am

Thanks Sarah!

I think I will continue - in the beginning I was very, very ill during the pulses.... and now, I do not get ill like that but still have bouts of feeling really awful (last night after I posted... figures)... so just the gradual improvement in my reaction to the pulses gives me hope that it is accomplishing what it is supposed to.

Also - during pulses, the tingling that is mostly absent all other times - comes back... and yesterday, my left hand (which was a problem when I was hospitalized and diagnosed -along with the lost sight) felt really "off"....
which scared me.

This morning all is well, I was a bit nauseous until I ate - but the tingling is absent again, and the hand is fine.
??

I do find that if I take it easy during a pulse I do better - if I do things like heavy cleaning - I get to feeling ill. Not always able to take it easy for 5 days though!

Has anyone who is on the CAP protocol had a MS episode during it?

I only had the one attack - and nothing since... so I don't know what it even feels like to have one coming on - can you tell ahead of time? Or do you just wake up and have a deficit?
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Postby SarahLonglands » Tue May 22, 2007 7:14 am

Well, I haven't had any during CAP, but before I experienced an attack in different ways. When my hand became useless twice before, I always had a feeling of numbness developing over several days. When it came on the last time before starting treatment it was very gradual, more so than the two previous times, over a period of a month or so. Sometimes if I made a great effort, I could write or paint immaculately. Eventually I couldn't do this and my hand just hung useless, unable to even pick anything up. When my right leg gave out, I felt funny for about a week, always hungry, forever eating but putting on no weight. I felt dizzy and as though I didn't belong in what was going on around me, then suddenly, I walked out of the post office and couldn't go any further. When my speech became slurred, that was overnight.

If you still get some tingling during pulses, you maybe would be better continuing for a while. But you will always tend to be a bit more fatigued and there is a tendency to feel nauseous, that's just the nature of imidazoles.

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 mamahawk » Tue Sep 11, 2007 1:29 pm

Well, I am almost at the 2 year mark of when I developed my patchy blindness, got very ill and ended up hospitalized for a few days.

I just started a pulse today after a very hit and miss summer - I think I only managed 1, maybe 2 pulses all summer. My eldest is a performer and between his 35+ shows and my other children's schedules - we were hopping all summer.

I had a neuro appointment in July - he is amazed.
My balance, movement, energy level, mental state are 100%, no deficiencies. If I didn't have my MRI's to show the 20+ lesions - no Dr. would believe I was as sick as I was in 2005.
"Keep doing whatever you're doing!" was his advice - and to come back in for a check up in March 2008.

With the kids in school, I have begun exercising again with a friend - we walk 2 laps, jog, walk,jog, walk, etc for an hour. I have more energy and stamina than I have had in 5 years.

I currently take Doxy 200mg./day, Azithro 250mg/MWF, LDN 4.5mg/night - and now that the summer is over - will be regularly pulsing Flagyl again.
Have been on LDN since December 2005, the Doxy regime since Feb 2006, Flagyl started May 2006.

Feel wonderful... so glad I found this site.
Thank you for the advice and support!
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 MacKintosh » Tue Sep 11, 2007 1:42 pm

Okay, so now I have tears in my eyes and I'm smiling uncontrollably. This is just the best news! Another check-up in six months? Not only does that say the doctor has confidence in the protocol, but he has confidence there's no side effect to 'manage'. I am so, so happy for you (and for all of us). Isn't it great to be too busy to have time to write here anymore? (But keep writing. We love the updates.)
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 mamahawk » Tue Sep 11, 2007 1:53 pm

Thanks! I really have been too busy to post... but now that summer is over I will try to get here more often - it helps me stay on track with the pulses if I post about them.

Actually.... My neuro appt was in JULY... he doesn't want to see me for *8* months :)
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Postby MacKintosh » Tue Sep 11, 2007 2:27 pm

Wow!

And remember when we were all so afraid to start? Here we are at the other end of the dark tunnel and the fresh air and sunshine look darn good from here on out...
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 » Tue Sep 11, 2007 5:48 pm

Me, too! Me, too! Overjoyed at reading this, Mamahawk! I just passed my third anniversary and today went to see my prescribing doctor who is undoubtedly still smiling broadly. So, so happy for you. You started when people should - before we are so far down the road that it seems almost impossible to get back.

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 wiggy » Tue Sep 11, 2007 11:26 pm

Great to hear Mamahawk - so happy for you! I remember when you first found the site. I only manage 1 flagyl pulse myself this summer - but I am back at it!
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Postby SarahLonglands » Wed Sep 12, 2007 2:02 am

Hmm, my neuro just doesn't want to see me, period, but not for the same reason as yours!

It is such good news that you were so busy over summer to not manage the pulses: that's how it should be.

Sarah :lol:
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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2 yr post-diagnosis MRI!!!!!!!!!!!!!!!!

Postby mamahawk » Fri Oct 19, 2007 9:42 am

I had my 2 yr MRI Monday, October 8.

My Dr. called Weds but I wasn't in - I called Thursday but my Dr. and his assistant were at a conference until the following week. I begged for *someone* to just read me the report or fax it to me.... I'd been waiting a year for these results!

Finally a Dr. called me (not my Dr.)
"I see you aren't on any conventional therapy" was her first statement.
??HUH?? Wow- Hello to you, too!
Right away... I knew she was one of those "I'm-the-Doctor" Drs. I had seen several when I was first diagnosed... you know the type - they only want to put you on Avonex and IV steroids?

I said - that I was on an experimental regimen and my Dr. was very aware of everything I was and had been doing - could she please just tell me the results!

"Yeah well, antibiotics don't work - you have a lesion right now, we can start you on steroid infusion" - totally curt, condescending, just awful.
My heart dropped.
I asked alot of questions - where is it, how large is it, how many others are there, what was my lesion count, could she please fax over a copy so I could read it myself, etc etc - I was assuming she meant a NEW, enhancing lesion.

Her answers were short, she could not have been less helpful:
No she won't fax one over because my Dr. wouldn't want me to have a copy of a report.
It doesn't matter where the lesion is - because just having one means my disease is active.
It doesn't matter how large it is.
They don't count the lesions.
What are my symptoms?

I was angry by this point at her evasiveness and rudeness and replied that I have NO symptoms and have not for over a year - and that I have a copy of every test, report, lab test that I have had done since I was diagnosed and would she "Please put a note for my Dr. or his assistant to call me or fax over the report as soon as possible."

She says - "It's better if you call back, he won't just fax you a report."

I repeated for her to put the note on the file said THANK YOU and hung up on her.
What an awful, horrible excuse for a Dr.

I was super depressed and discouraged - but my husband said - WAIT to talk to your Dr - that just doesn't sound right since I feel great.

SO - a rough depressed weekend - she had made it sound like I should expect an attack any minute!

MONDAY... my Dr's asst calls me.
********************************************

THERE IS NO PROGRESSION ON MY MRI.
THERE ARE NO NEW LESIONS.
EVERYTHING IS STABLE
Quite a few of my old lesions are still present (well duh... of course that means I must need STEROIDS!) but definitely no new ones or enhancing ones.
********************************************

MY Dr's recommendation: keep doing what I'm doing!!!

I told her about the Dr. from Friday - that she basically lied to me and ruined my weekend with her scare tactics and agenda, that she refused to answer my questions, that she refused to send the report, that she didn't even respond when I told her I had NO symptoms.
She apologized for the idiot Dr.... explained that this Dr. is very against alternative therapies, etc... blah blah blah and said to just keep doing what I am doing and she faxed over the report!



As angry as I was - I am thrilled to hear the true report!!
But WHY are Drs... and MS patients (! I cannot tell you how many people look at me like I'm crazy when I tell them my treatment plan - even MS sufferers with debilitating physical deficiencies - refuse to look into this!) --- Why are they so threatened by the prospect of alternative therapies and regimens? I have seen many Drs since my diagnosis - and have found only 2 that, while scientifically, distantly, skeptical - are willing to entertain the notion that they don't know everything... and that one of these alternative plans could do some good. My Dr. made me sign a waiver - but never made me feel inferior or was belittling that I wanted to try this..... and he wrote all my scripts! I don't understand why so many Drs are so close-minded and rigid.

Anyway -
Drama aside...
In the past 12 months....
My brain is 100% stable with ZERO progression.
AND I feel great.
Total mental clarity, no physical symptoms.
Walking 3 times a week, spending several hours in the garden each week, and just started a yoga class.

I cannot even express how excited, rejuvenated and most of all *thankful* I am....

Still taking:
Doxy 200mg/day
Azith 250mg/day
Flagyl 500mg/8hrs x 5 days every month
LDN 4.5mg/ night
I'm no longer watching my diet closely, although I do eat a healthy diet.


Even the last Flagyl pulse...
For the first time EVER, I made it the entire 5 days without having to nap, no tingling present, no disrupting ill feelings - I did my normal daily activities the *entire 5 days*. I had one night sweat, and 2 instances of mild nausea - other than that NOTHING.
This had never happened before - I used to be IN BED for much of the 5 days... feeling utterly awful, gradually this got better and dwindled in days of feeling ill - until nearly nothing the last time.

I see my neuro in March for a check up.
May 2008 will be the 2 year mark for Flagyl... and I may stop at that point if I continue to have no response to the Flagyl pulses... or maybe continue until October 2008 when I will have my 3 year MRI...


Yippee!
Thanks to all of you have offered information, advice, and support!!
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Postby robbie » Fri Oct 19, 2007 11:29 am

How long have you had ms mama? just trying to get my own take from abx, there is so many feelings being thrown around, one really has to take it all in. You right though why not try it! all i can say is i hope your feelings last 5,10,15 years or whatever but we will never know. I can't see anyone being here that long. So you figure it took about a year to turn the corner?I said to my wife last night this(antibiotics)will either kill me or i will turn the elusive corner and have the knowing feeling that the ms is at bay and not destroying me further.
Glad you feel so good! i'm sure there are many here including myself that wish they could share in your joy..
Had ms for over 19 years now.
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