Mamahawk's Regimen

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

Postby mamahawk » Fri May 19, 2006 10:25 am

I started it for that very reasoning - I already felt crappy so why not make it REALLY quality crappy. Mission accomplished! Except that I really didn't expect to sleep that much, I'm not a napper.

The last day, I got an almost panic feeling because I felt SO terrible and so much congestion, and the digestive upset just culminated into a not good day. I'm bummed that I quit... but I am trying to remind myself that this needs to be a long term fix and a day and a 1/2 won't make a bit of difference in the long term.

Need to plan better for the next one and have all tasks caught up so sleeping won't be a big deal if it happens again.

Certainly is nice to have this board to ask questions!!

OH - the foot tingling that re-appeared after returning from vacation only lasted a week and came back one day during the pulse but is currently 100% absent. Other than that, I now have absolutely NO MS symptons and am looking forward to my October MRI.
User avatar
mamahawk
Family Member
 
Posts: 67
Joined: Wed Dec 28, 2005 4:00 pm

Advertisement

Postby Katman » Fri May 19, 2006 10:36 am

That is truly music! May your loss of symptoms that you didn't even know you had be as prolific! As for cutting your pulse short, that is not the coward's way: his way is not to do it at all! I only took the full dose the very first time, and only the first day I think, and after that only 375 mg 3xd. I simply couldn't handle any more. You are planning well for your future - you probably have one of much higher quality than you would have otherwise!

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.
User avatar
Katman
Family Elder
 
Posts: 264
Joined: Mon Jul 11, 2005 3:00 pm
Location: North Carolina USA

Postby Anecdote » Fri May 19, 2006 10:47 am

Hi Mamahawk,

What a time you ended up having, poor thing. It could be a reaction to the flagyl, or part of the cold virus, but if its not horribly itchy I shouldn't worry too much about it. I ended up with a lupus like butterfly rash on my nose and cheeks, likewise it wasn't itchy, but being where it was, it was very obvious. It only lasted about a week, though, and just the once.

Very few people do it for five days first off, so you did well to last three and a half days. See how you go in three weeks. Flagyl makes most people a bit more fatigued than normal, but probably the over-riding sleepiness was also partly due to the cold.

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.
Anecdote
Family Elder
 
Posts: 2098
Joined: Thu Jun 17, 2004 3:00 pm
Location: Bedfordshire UK

Postby mamahawk » Fri May 19, 2006 12:57 pm

Well, if the rash becomes worse, I will call the Dr. but I'll bet it is just a side effect.
Oh - and I must say within 12 hrs of my final dose I felt SO much better - now if my 4 year old wouldn't have woken me 4 times last night, today I'll bet I'd feel even better than I do LOL


Side Effects - Flagyl [Metronidazole]

Common Side Effects:

Check with your doctor if any of the following side effects continue or are bothersome:

* Diarrhea
* dizziness or lightheadedness
* headache
* loss of appetite
* nausea or vomiting
* stomach pain or cramps

Less frequent or rare:

Check with your doctor if any of the following side effects continue or are bothersome:

* change in taste sensation
* dryness of mouth
* unpleasant or sharp metallic taste

Check With Your Doctor:

Less common

* any vaginal irritation, discharge, or dryness not present before use of this medicine
* clumsiness or unsteadiness
* mood or other mental changes
* skin rash, hives, redness, or itching
* sore throat and fever
* stomach and back pain (severe)

For injection form

* Pain, tenderness, redness, or swelling over vein in which the medicine is given

Notify Doctor Immediately:

Less common

* numbness, tingling, pain, or weakness in hands or feet

Rare

* convulsions (seizures)

Other Notes:

Metronidazole (flagyl) may cause dark urine in some patients. This is temporary and will go away when you stop taking this medicine.

Other side effects not listed above may also occur in some patients. If you notice any other effects, check with your doctor. This information is meant only as a guideline - always consult a physician or pharmacist for complete information about prescription medications.
User avatar
mamahawk
Family Member
 
Posts: 67
Joined: Wed Dec 28, 2005 4:00 pm

Hi

Postby wiggy » Sat May 20, 2006 7:05 am

Mamahawk,

Congratulations - you did it! I was thinking about you before you posted wondering how it was going and I am sorry it was hard but glad to see you are done with it and pulling through. I think there must be a lot of anixiety over that first pulse.

Take Care
User avatar
wiggy
Family Elder
 
Posts: 122
Joined: Fri Feb 03, 2006 4:00 pm

Postby sojourner » Sat May 20, 2006 11:11 am

Mamahawk,
You did more than dip your toe into the flagyl pool---you dove right in! With a cold to boot. I am glad for you and that you are MS symptom free right now.

Really, you should not think you did not do enough. My husband's first pulse consisted of 2 pills---that's it! So you are a hard charger and should receive a medal (or a foot rub or something wonderful).

The important lesson here is to find what pace is right for you so you can continue to live normally. Treatment is tolerable if the pace is right.

Celebrate! Lexy
User avatar
sojourner
Family Member
 
Posts: 87
Joined: Mon Dec 12, 2005 4:00 pm

Report on last day of 3rd Pulse

Postby mamahawk » Fri Jul 21, 2006 1:10 pm

Well, I did my first pulse in May14, 15, 16 and half of the 17th... then had to cut it short due to being so sick.

My second pulse, I started June 8th and it was a breeze - a bit more tired than usual, some nasal discharge, but for the most part very tolerable. Made it the whole 5 days, no problem. Tingling appeared the third day and was gone by the 5th day. Figured the 1st one was so hard because I had a cold at the same time.

After the pulse, energy levels remained very high - 4+ hours gardening, hour long walks, felt good.

Life got a little over-scheduled, so the 3rd pulse didn't start until July 16th.

Felt fine when I started the 3rd pulse, took the first pill Sunday night before bed... and the following day and since then I have felt SO ill!
I can't get enough sleep (9+ hrs at night + naps and more naps), felt flu-ish, nauseous, just generally crappy to the point of not being able to manage a normal day. 2 days, I was in bed most of the day - So unlike me.
I just took my last pill of the pulse, hoping by tomorrow I improve noticeably.


Is this normal??
To have one pulse go fine and the next go as bad as the first?
What is the theory - that Flagyl only kills the bacteria that are out and about...?

I am committed to staying with this until my MRI in October... if the MRI is worse or if new symptoms occur, I may need to re-think everything, but I am desperately hoping that the research and theory are a cure (as everyone trying this therapy is)...

Anyway.... just wondering if others have had good and then bad pulses - and if there is any pattern to it or rhyme or reason?

Everything else - doxy, azith, LDN, NAC, supplements and vitamins has remained the same, nothing new lifestyle-wise.

Waiting for tomorrow...
User avatar
mamahawk
Family Member
 
Posts: 67
Joined: Wed Dec 28, 2005 4:00 pm

Postby wiggy » Fri Jul 21, 2006 2:53 pm

Mamahawk,
I am so sorry you are feeling awful - but what you are experiencing is normal when you read everyone's stories. You may want to visit CPn Help dot org as there are even more experiences. I am postponing my 1st flagyl as I was so sick for a few weeks on just doxy, zith and supplements - I was suppose to start but need to wait until Fall as I can not be so sick and take care of my 6 year old all day.

Everyone reports the same or improved MRI's so I hope you experience the same.

The treatment is very hard - almost like chemo when you are so sick but the rewards await you in the end so try to hang in there.

I am no expert but its my understanding that it depends on how much bacteria die off happens each pulse of flagyl gages how you feel afterwards and wait until you recover before you start the next pulse - give your body time to recoup.

I am glad your still with it as I wasn't sure because we had not heard from you.
Take care
User avatar
wiggy
Family Elder
 
Posts: 122
Joined: Fri Feb 03, 2006 4:00 pm

Postby Anecdote » Fri Jul 21, 2006 3:08 pm

Hi Mamahawk,

I was just wondering yesterday how you were getting on. I did the full five days on my first pulse and felt nothing apart from undue tiredness and the ability to burst into tears at the drop of hat. Since I already had that to a lesser extent with he MS, I didn't think overmuch about it. The second pulse the same, except I felt somewhat dissociated from what was going on around me. No difference there, some would say. The real crunch came with the fifth pulse, when I had such intense thalamic pain moving around anywhere from my right shoulder to my right fingers. I temporarily lost much of the use I had regained in my right hand and arm because it was so damned painful. It would fade away, then come back in a different part of the arm. Next pulse, next to nothing, and nothing very much after that.

You have a nice way of describing the theory, but yes, flagyl can only kill something in the right stage of its development, otherwise you would only need one big go and that would be it. Have a look at this page, if you haven't seen it already:

http://herkules.oulu.fi/isbn9514269853/html/x467.html

Therefore it is not unusual for pulses to vary from one to the next. Come October, I would suggest that you time the flagyl pulse to come just after the scan for this reason. Hopefully your MRI won't be worse, but you might find it not much different. You want to aim at first for no worsening, then see what happens after that. New lesions might just fade away, if you have had something for a long while, but causing no symptoms, they might never go completely. Katman, LifeontheIce and I all know about this.

Please let us know how your next pulse goes!

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.
Anecdote
Family Elder
 
Posts: 2098
Joined: Thu Jun 17, 2004 3:00 pm
Location: Bedfordshire UK

Postby mamahawk » Sat Jul 22, 2006 4:59 pm

Thank you!

Well, I feel much much better now. Physically as the day goes on, and mentally - knowing that all of this has been experienced before.

I must say, I'm very excited about this treatment - everything I've read about Cpn makes *sense* to me... the whole "take interferon to knock out your immune system" NEVER made sense to me - nor did the autoimmune theory. What I've read about the initital infection, and the long term symptoms and manifestations - makes sense and is very close to what I have experienced.

Now, I realize many people are diagnosed with MS and have long periods of no symptoms, but I am (obviously) hoping this is an actual CURE, and the more of us guinea pigs that have positive results will cause the medical community to stand up and take notice.

I think of my uncle who has been bed ridden for 20 years with this disease and feel so incredibly sad thinking of the possibility that this is just a bacterial infection gone wild.... and that disability could have been prevented if we'd had the knowledge.


So - I will continue taking my supplements, my abx and my LDN - and (im)patiently wait for October!

I see my neuro in August for a checkup - he is not "on board" with the abx protocol, but he is very willing to listen, and is interested in the theory and research being done.
He was the first one I heard of Naltrexone from, and he has other patients on doxy and minocyline (at the patient's request) - but I am the first he has prescribed the whole protocol for, so he had lots of questions for me - and his disclaimer/waiver for me to sign, lol.

Great! I now have 3 weeks of peace until starting again. Will definitely plan better this time - grocery store stock up, not schedule unnecessary appointments, etc. Looking at it as a "treatment"...

Thanks for the responses Wiggy & Sarah!
User avatar
mamahawk
Family Member
 
Posts: 67
Joined: Wed Dec 28, 2005 4:00 pm

Postby wiggy » Sat Jul 22, 2006 6:21 pm

I have friends bedridden with MS too and I feel the same way as you do - I wish I knew about this 5 years ago and so happy to know of it now.

If I recover will I be able to convince my friends to try abx that are so sick (in bed) and will it work for them?

I have always stayed clear of the interferons as I did not believe my body was attacking itself either. I talk to my family and friends about my new venture and they are not sure I am on the right track but my husband and I are sure.

My legs are not very spastic right now - we are shocked, have not been like this for years. I do not know how long it will last before my legs will be spastic again - stories claim it will be up and down for the next 8 months - so I plan to enjoy it for as long as it lasts.
Take Care
User avatar
wiggy
Family Elder
 
Posts: 122
Joined: Fri Feb 03, 2006 4:00 pm

Just Checking In

Postby mamahawk » Mon Aug 21, 2006 7:34 am

Finished my 4th pulse last Thursday. This one made me ill, but it was definitely not as bad as #3 and #1.


Day 1 - not much reaction at all (1st time I was immediately sick within an hour of swallowing the first pill - feverish, fluish. Did not happen this time.)
Day 2 - very tired, start to feel a little ill, chills, mild nausea
Day 3&4 - feel really yucky, very tired - panicky (sp?) almost... feel bad enough that I feel like I need to "get away" from it. Very Grumpy and short-tempered. Ended up in bed quite a few times and I slept WAY more than usual.
Day 5 - about the same as 3&4 but mentally better because I knew it was almost done.

Post-pulse days - still extra tired for a few days, but the nausea and sick feelings went away pretty quickly (10-12 hrs after last pill)

The other times - about a week after the pulse ends, I feel dramatically better and so alert. Waiting for that upswing from this one.

This time - I had one brief tingling episode - (the other pulses triggered tingling for a full day or two or three)... then nothing for the rest of the pulse.



Went to see my Neuro this month, and he tried and tried to find something wrong with me - and couldn't!
Made me walk the 'tightrope', walk fast up and down the hall, balance on one leg, close my eyes, touch nose with alternating hands, etc... and he gave me a shove while my eyes were closed (on one leg) - no problems at all! All reflexes very good, eyes fine.

He said whatever I was doing "Keep doing it"... he is quite interested, but very skeptical of the abx - but he DID refill all of my scripts.

My 1 year MRI is going to be in October... I need to see if there has been an improvement either in the size or number of my lesions. I had 20 last year, 3 large enhancing. I was very, very sick then... and feel so good (except for Flagyl days) now... but I am still feeling like I am in Limbo land.

I'll continue what I am doing (diet, LDN, abx) even if there is no MRI change, because I feel so good and am having no problems... but to see a positive MRI change would change everything for me... mentally.


So - next pulse will start the 2nd week of Sept.
MRI in October
User avatar
mamahawk
Family Member
 
Posts: 67
Joined: Wed Dec 28, 2005 4:00 pm

Postby wiggy » Mon Aug 21, 2006 9:13 am

mamahawk,
I can't believe you already finished pulse 4 - way to go and it sounds from your last doctors appointment you are doing great!
I am going to join you in Sept. - my first pulse will be 2nd week in Sept.
I can't wait to hear results from MRI in October - keep us posted.
User avatar
wiggy
Family Elder
 
Posts: 122
Joined: Fri Feb 03, 2006 4:00 pm

Postby Anecdote » Mon Aug 21, 2006 3:13 pm

Mamahawk, your neurologist wouldn't be a neurologist if he wasn't a tad sceptical about something that belongs in the realms of the microbiologist, much like the way that gastrointestinal surgeons were by and large, the last people to believe that stomach ulcers were caused by h-pylori infection and so didn't need chopping out, but just the right course of antibiotics. It took twenty years of work by Mitchell and Thompson before this was fully accepted.

With regards your MRI, there might be no change, in some people's experience, but the thing to aim for is that it is no worse and I guess you'll be OK there!

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.
Anecdote
Family Elder
 
Posts: 2098
Joined: Thu Jun 17, 2004 3:00 pm
Location: Bedfordshire UK

Postby mamahawk » Thu Sep 14, 2006 11:03 am

Well, I am due to start pulse #5. Overdue actually, but last weekend was my organization's huge annual fundraiser weekend and I am responsible for a very large part of it. I've been very stressed and busy, terrible insomnia from too much on my mind and my eating habits and supplement-taking has been really hit and miss.

My feet are tingling yesterday and today off and on which is really frustrating and depressing as I have not had any problems at all since brief tingling at the last pulse. I think I over did everything and now I am worried that I may screw up my MRI. Silly, and pointless to worry about - but I am disappointed in myself for putting the benefit over my previous priority of my health and stress-reduction and healthy habits.

Last year (after the same annual fundraiser) is when I was so sick and never recovered after the event was over... ended up partially blind and in the hospital the end of Sept '05.

SO - I'm nervous, but determined to get back on track with the supplements and eating habits for the next few weeks before my follow-up MRI and blood work in October.


Will start the pulse Saturday (things scheduled until then) - and will post about it next week.
User avatar
mamahawk
Family Member
 
Posts: 67
Joined: Wed Dec 28, 2005 4:00 pm

PreviousNext

Return to Regimens

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users