Submitted by mrhodes40 on Wed, 2006-01-11 23:54

Inquiring minds want to know, thank you for asking so here's the scoop:
Flagyl pulse one is done as of last weekend. I finished it on saturday, so Sunday I had a glass of wine. Here's what I have noticed:
to review, I had one pill of flagyl on about the 12 dec then two days of it about 20-21 then a full pulse jan 3-8.
All through dec I was seeming weak. I fell down several times. I fell on two occassions twice in one day. the day after the flagyl pulse, sunday, I went to the grocery and had I not had the cart would have fallen three times I kept tripping badly on my weak floppy leg. I was DEFINITELY not walking well. It feelslike I have had an exacerbation and unlike others I am not noticing a clear going down and then improvement. It's more like I'm just worse over all, but then I trickled alto of flagyl in over the month too. I'm going to wait a full month before doing any more. Since the end of my pulse then I've been taking a hot epsom salt bath every day just to try to detox (plus it's so fun I have bubbles in there too) as well as making sure of the supplements. Jim points out the vitamin c flush is good and it is. It clears up that dull headache and unwell feeling. I am not having any good things happen yet as a result of the pulse. I am still kind of weak but day 5 post flare is tomorrow so maybe then we'll see. I'm going to the gym.
Maybe it'll be a wonder day there!
One thing, I meant to take the week off but I I feel clear headed and perfectly fine to work, just unstable
and wobbly so it's hard getting to the office but not hard once I'm there. I just have to use my cane.
So I'm alive and well over here!
blessings to everyone of us
Marie

Marie, I don't think improvements by and large happen all at once, after a flagyl pulse.  They didn't for me, anyway. You seem to be at that stage in my treatment when David thought it maybe wasn't working after all, except that I was clearer headed and could do something with my previously useless right arm.  As you say yourself, I notice!  Please go easy at the gym, though.....Sarah

Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Be patient, Marie. Improvement has to  happen.I analyzed your post several times looking for any sign of improvement that you missed and I found one.You wrote "I feel clear headed and perfectly fine to work". That's what I am after all the time.

Barbara.

Cured of multiple sclerosis, stopped the Wheldon's protocol in Nov,2008. Use only LDN.

Hang in there,Marie!
I didn't feel like there was any improvement after the first round of Flagyl. The second and third were sheer agony and the fourth was very painful too. After the fifth one, I began to notice some significant improvements. But I had to feel really bad in the beginning in order to feel better. When the anxiety hit, I felt like I was again sinking into a relapse but it resolved so quickly and was without the crushing fatigue. And I had muscle and nerve pain in areas I never had before.
It's a hellish journey but we are brave enough to take it.
You have our support! Keep to the path.
Raven

Feeling 98% well-going for 100. Very low test for Cpn. CAP since 8-05 for Cpn/Mycoplasma P.,Lyme, Bartonella, Mold exposure,NAC,BHRT, MethyB12 FIR Sauna. 1-18-11 begin new treatment plan with naturopath

Thanks guys! I will certainly keep to the path. It is just hard getting "worse". Luckily to day I had an interesting morning function wise with good walking, balance and strength. I walked down the hall at work to my office so nearly normally that it felt wierd. I had walked in well also, practically marching in. I was so excited to notice this that I got my teacup and went back to the break room the see if anyone noticed I could walk. NO one did, but then they were working, but I did not spill any tea going back, and again walking nearly normally in a nice firm step. I sat in my room working for about 2 hours then returned to the front area and walked out to my car, which was on the far side of a grass median. Ordinarily I'd walk over the asphalt but in light of my exciting funcitonality I decided to walk OVER the median, lumpy grass and all.
Worked out fine. NO problem-o. I did not trip or wobble. I got a littel more tired as the rest of the errands (shopped for and bought a birthday mountain bike and grocery shopped and went to the gym)to be done went on and by the time I got home was again more wobbly, more like usual for me. At that point I'd not have chosen to walk the median: that foot was again a floppy fish at the end of my leg, almost tripped getting in the teeny (3") stair. This experience may seem flat odd. How can I be so different in a few hours? fatigue, physiological or neurogenic or both, of course is the most logical thought followed by the notion that as a nerve recovers, it is not heavily myelinated YET so it wears out and stops working so well even if it starts out promising after good rest. The fact that it worked well in the beginning of the day I find very promising.

Oh hey! Here's something big that happened Alex, you there?? There I was going to bed and I said to myself last night, " Self, you are not twitchy so let's skip the requip (anti restless leg med works on dopamine) and see what we get like Alex did." I put the jar by the bedside in case I needed it and SLEPT ALL NIGHT WITH NARY A PROBLEM! I have tried to wean off this stuff for two years with out success. Night after night that I tried to quit using it, I laid in bed ignoring jumpy spasm after annoying spasm. saying to myself "surely that one was the last and I'll drop off now...I refuse to take more..." I have tried this every week or two for two years. Nope none of that; it just was as if I got better. Now that is a great thing because it will result in more strength as these kinds of drugs weaken me (and everyone usually). this is a sign of real improvement. I hope, like Alex, I am free of spasms and comfortable for now on!

So here's the updated objective (someone else can verify it) improvement list:
-muscles react like a normal person's to massage with relaxation happening instead of them staying in spasm
-Able to sleep without requip for nighttime spasms (at least once).
subjective signs of improvement(I am the only one who can tell)
I have more energy
Subjective signs of reaction to endotoxin
runny nose, productive cough, headache in response ot both NAC and flagyl
Objective signs of nerve impairment secondary to inflammation/treatment reaction
-in general weaker, more falls, worse falls, hand impacted where before it seemed OK (typing is hard).
OK so that's my next in put thank you for the support and kindness!
Marie

On CAP since Sept '05 for MS, RA, Asthma, sciatica. EDSS at start 5.5.(early cane) Now 6 (cane full time) Originally on: Doxy 200, Azith 3x week, Tini cont. over summer '07, Revamp of protocol in Summer '08 by Stratton due to functional loss; clarithro

Marie, if you can walk nearly normally sometimes, when you couldn't before, you can't be getting worse. I might get up in the morning and feel like there is nothing wrong with me, but if I am tired I have to pull myself up the stairs holding the banister with both hands.  Also if I get worked up by something, my walking goes all to pot.  Stay calm and I am fine.  Also I am not very good on rough ground: the 'princess and the pea' syndrome, every little irregularity in the ground feels like a mini-mountain.  I don't like treading on those dimpled areas they put on safe crossing points for visually impaired people.  If I had been with you I would have stuck to the tarmac.I'll bet you felt a bit miffed, though, when you went back to the break room and nobody noticed how well you were walking.  In my experience, they only notice when you are doing spectacularly badly, so you'll probably have to get used to that......Sarah

Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

I made night two with no requip and no spasms. Great news!. I walked well this morning also for the first hour and this once again is absolutly new. I have not walked "nearly normally", not even for a few minutes, in at least a year (though my sister says it's more like 5 of wierd gait). This is clearly an improvement, even though brief in terms of my overall day.. I teased my co workers, hey I walked OK yesterday and you did not notice. I even went and got tea and you still didn't say a word. Well the secretary said I did notice and I also noticed you walked in very well this morning. HUge difference cause last week you were scary... So there you go! This is an objective thing.
FACT is, if that nerve can function even for a little while, it is not gone altogether, so potentially it can come back with rehab on my part. SO it's working!! I'm getting better, too! Yeah
Marie

On CAP since Sept '05 for MS, RA, Asthma, sciatica. EDSS at start 5.5.(early cane) Now 6 (cane full time) Originally on: Doxy 200, Azith 3x week, Tini cont. over summer '07, Revamp of protocol in Summer '08 by Stratton due to functional loss; clarithro

Wonderful, Marie!  I do this protocol pretty much in tandem with you, since we both started at the same time.  Your every phase and nuance of improvement makes me so VERY happy!  Isn't it amazing what comes to us with faith and pigheaded determination? 

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

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

Still better
Thanks Mac!
Commrads in arms! I am so glad to finally have something that let's me know I'm getting better. More energy is really a great thing but it's so subjective and vague also, one can prevaricate that it's winter and cooler now maybe that's what's improving my energy, you know? But this. THis is big. I have been on sinemet or requip for many years, like about 6 or so, for restless legs at night secondary to MS. I have flexor spasms and they are so powerful I have strained my own muscles. It is a big BIG deal to be able to go (now) three nights without this medication and sleep comfortably. And I want to be clear I have repeatedly tried ot go without this because it makes me weaker. We also noticed my legs don't leap around during massage either as they did. I'd get massage and as I lay there I'd twich and spasm all the time. SO. Here I am at 4 months. For all this time I had little glimpses of better days, like the day I went shopping with Sissy and was able to do it, or the day I shopped for Christmas presents in November and managed 6 stores. These were energy differences but may be I just tried harder I reasoned. Maybe I was not that tired before treatment. Then the massage therapsit said these muscles are better, another little clue. But NOW I can easily go without spasm medication and I know I'm better. There is no question that I am responding! Just when I was not sure. I am so glad that I got this little breakthrough now. I needed it! Sarah said she was at that point and they were not sure it was working. Well, that is what happened to me too. I kept thinking it might work for others but it might not for me, I was protecting my heart from that. So I am here to say that at 4 months I personally have had a small hint of what might come ahead, but it's taken this long to have any sort of knowledge that I an actually responding for sure. And all through December I felt like I had had an exacerbation because I walked soooo badly, and that was the month I took flagyl, but here's the wierd thing, it did not seem like it was particularly like I took flagyl and then got worse then better in a clear down and up pattern so it seemed certainly connected. Instead it seemed like I was just constantly worse all month (I had one pill, then later two days then a 5 day pulse all in one month) and this worsening did not seem connected to the med. If you are new to the treatment just wanted to share how it was for me. I had great belief that CPn could most certainly cause MS symptoms because of how the germ behaves in the body, but not certain it was causing MINE. Now I know this and I am glad for it...
just wanted to share in case another newbiew si outhtere watning to know..
Marie

On CAP since Sept '05 for MS, RA, Asthma, sciatica. EDSS at start 5.5.(early cane) Now 6 (cane full time) Originally on: Doxy 200, Azith 3x week, Tini cont. over summer '07, Revamp of protocol in Summer '08 by Stratton due to functional loss; clarithro

Thank you Barbara! If not for the input and support of all the people here in this site I'd not have made it. I really had some doubts; nothing was dramatic enough to seem like what I expected. I did not get as bad reactions to the abx as I expected, did not feel a whole lot better or clear headed (but then I never had a huge fog as others did) after time and did not solve chess puzzles in the newspaper or get so sick from flagyl that I was in bed or something, though I did have a bad month in december it didn't seem "connected" and did not seem to relent. My worst problem has been emotionally coping with the doubt and constant self monotiring trying to figure out if it's really helping me or not. Thanks to everyone of oyu for being there and giving me the kind support that keeps me sane..
MArie

On CAP since Sept '05 for MS, RA, Asthma, sciatica. EDSS at start 5.5.(early cane) Now 6 (cane full time) Originally on: Doxy 200, Azith 3x week, Tini cont. over summer '07, Revamp of protocol in Summer '08 by Stratton due to functional loss; clarithro

Hi Marie, as a genuine Newbie your story and those of others give me and I am certain others a lot of hope and strength.  I was only diagnosed a few weeks ago now but already I feel my symptoms getting worse as I am not yet on any treatment (or I just notice them more now!).  I love your story about carrying cups of tea as this is one of the main symptoms I have at the moment along with walking funny.  Reading here suggests that CPN is certainly a culprit but might not be the only one of course for others.  And only convincing my GP/Neuro to let me try this treatment and time will tell whether it's also the cause of mine.

Good luck and know that your stories are indeed a help.

Hello Hyder! I'm glad you joined us here! Do start a blog when you get ready!
Thank you for the encourgement, and I am always thinking about the readers. I am the one who finds herself unable to resist calls to post measurable results so people can understand what we mean when we say we are better. BUt it is interesting that treatment leaves you really in many ways unable to say how you know you are better because improvement is gradual. As I mentioned more energy is imprtant to us but not really measurable. I am very pleased to have something reportable in an objective way. No medicine and no spasms is very objective. It works! Marie

On CAP since Sept '05 for MS, RA, Asthma, sciatica. EDSS at start 5.5.(early cane) Now 6 (cane full time) Originally on: Doxy 200, Azith 3x week, Tini cont. over summer '07, Revamp of protocol in Summer '08 by Stratton due to functional loss; clarithro