Day one of third Flagyl pulse/niacin/joint pain.

For my own info-I started another Flagyli pulse. This is only my third pulse as the herxes were very painful to joints. Saw Dr. Powell last week and he started me on Niacin">i. I am having a lot of trouble with shoulder pain and neck pain  but I do feel more clear mentally today. Could it be the weather. Beautiful warm day here in N. CA. Also,I think head clearing  may be from the niacin. So far at 500mg I haven't experienced any flushes. I am not sure if I should increase now. I need to ask Dr. Powell as his instructions are to  take 500-2000mg , increase slowly.

Speaking of shoulder. Here is something I am wondering about. Shortly after Halloween I began having shoulder pain which turned to severe pain within one day.  Extremely painful, aching.Was referred to an ortho Dr. who did an  Xray and a cortisone shot. Xray suggested maybe an impingment. Also referred for PT and a TENS unit. Nothing helping. Last week had an MRI which shows inflammed rotator tendon,impingement, degenerative arthritis and a possible small tear. OK, here's my question, Why is my shoulder eroding  and inflammed? Cpni????. I had a bad flare in shoulder, fingers and knees when I firt started back on NACi. Is this Cpn? I am 62 so I realize my joints are 62 years old as well but I thought degeneration was from hard use. I only use my shoulders for light work.

finding a doctor

How do I find a doctor to prescribe the necessary medicines??


I just tried to buy from Canada and they are no longer shipping to the USA.  Said the american officials are sending the drugs back to them.


Linda Morasse

Finished 7th pulse

Monday was my 5th and last day of this pulse. Had about two days of feeling achy and fatigued, third day mildly crappy, and the last two days felt much better, more energy.

Now the day after the pulse I have a mild stomach bug and feel fluey, tired and nauseated-- but the same thing has been through other family members, so I know it isn't from the Tinii pulse! Just "normal" crappiness. When I told my wife I dismissively that was "just" having a bout of the stomach flu she kindly said, "Well, you  struggle with feeling bad so much, you could use a break instead of getting the flu too."

I have to say that this pulse felt a more difficult than the last one, and I think it has to do with the extra effect of the INHi. Just a suspicion. I'm still only on 150mg of it, and will ramp up next weekend perhaps, but will also be doing the Tini pulses every two weeks, following Dr. Powell's protocol. So there will be a report on my 8th pulse sooner rather than later. 

First pulse on INH, rifampicin, amoxicillin

It's my 3rd day of my 11th pulse altogether and my 1st pulse on the INHi, rifampicin, amoxicillini combination.    I've been on antibiotics since April 2005 (or Feb 2005 if you count internet-ordered abxi).  At the moment I would say that I've had two neurological symptoms disappear or nearly disappear.  These are the night spasms and the funny l'hermitte type signal in my right kidney area.  Otherwise my walking is pretty lame and the burning sensation in my left foot is still there on and off although it has perhaps become less severe and less frequent.  That could be wishful thinking though!  I don't think my walking is much worse/better than when I started the antibiotics, which means no progression.  Good.

 My nice doctor has prescribed 80mg Lipitor and more melatonin">i for me.  He said he enjoyed our meetings since "it's like doing a medical viva"  (oral exam) which rather pleased me.  He referred me to gamma 1 laminin research at Helsinki university which I'm going to try to examine shortly but any thoughts on this would be interesting.

yguners antibiotics log 2

My little update for jan-06

The activity in my spinal cord changes everyday, it sometimes feels like a cat scratching or itching inside my spine and sometimes i feel light pain in the middle and lower area.This activity in my spinal cord is getting less and moving to my lower back where my first lesion appeared.Besides all this i don't have any other pain or activity in my body.Everytime i pulse Flagyli i happen to feel more activity in my spine and get more spasms all over my body though.


Relapse??? Please help

Everything I'm seeing tells me that I'm having another relapse. Is this possible?

I hope this is all "normal"

Hi Everyone

This is my first blog here as I've been hanging around This is MSi for over a year.

I know most of your stories very well and of course it was Sarah who suggested I move over here as I was getting a bit panicked after taking my second pulse of Tinidazole and feeling terrible!!

I've been on the Doxyi/Roxyi combo (sounds like a McDonalds happy meal) for about a year. Sounds like forever but there was never the right time to start a pulse due to school holidays,husband working away from home,eldest son being hit by a car,Christmas etc,etc etc,and so I started at last.

I managed 2 days in December and 4 in January and so am ready for pulse number 3,but I'm stuck between being excited and terrified at the same time.

i knew we had to get worse before seeing any improvement,but having come from moving quite well with one or two crutches(I just have a weak right leg) to not being able to put any weight on my right foot as it just wont support me,plus very painful muscle spasms every minute and a nasty dragging pain around my right ankle.

Are Cold Medicines Okay?

Hello everyone: 

Am wondering if it is okay to take pseudofed or Nyquil, Robitussin, etc.  to help with the symptoms of what I now know is the NACi flu.

Ny nose is running constantly and at times I can't breathe.  would taking cold remedies hinder the effects of Abxi or NAC?



Sorry about my post yesterday. Endotoxinsi from dying C. Pneumonae make me miserable, achey, restless, fatigued. Pain I can handle; aches are a different story. Pain triggers endorphins. Endorphins get you high. That feels good. Aches just trigger misery, malaise, and depression, a feeling that life like this isn't worth living.

I know why I'm miserable - I'm fighting for my life against MSi. From what I'm seeing, I've got the upper hand. I'll only lose if I give up, and I won't give up. Sure, I'll whine, and wish I felt better, but given more time I will get better, stop aching, and stop whining.

Please, just bear with me. Oh, and good news - adding Alcar didn't mess up my stomache. Yay!

Adding supplements

Still playing yo-yo on my recovery. Achey all night, and most of the day too. My grip strength is nearly zero, and that affects typing, eating and dealing with my contact lenses. I can stand up, but moving is very difficult. I'm constantly cold, but drinking green tea with honey helps. Recovery sure is slow.

Tonight, I'm going to try adding 500mg of acetyl l-carnitine to my regimen. I recall this was supposed to help repair nerve damage. Hopefully, it won't mess up my esophagus, now that I've stopped NSAIDsi. I'll take these after dinner, to help cut down on acid build-up.

If I can tolerate Alcar, I'll try adding 150mg ALA, and maybe co-Q10 a well. I have a bottle of Niacin">i - should I add that, too?

Wobbling Through Purgatory: Been Down this Road Before

Treatment time is like travel time---it seems like you will travel on forever and then you arrive at a new destination that is much like the last place you visited. Only different in many ways. Just finished my 6th round of Flagyli and did not escape the misery it brings. Charcoal, my Sooty Friend, is the thing to take mid-morning, mid-afternoon and evening. But fitting it in between food and suppliments is sometimes hard. I have to keep reminding myself of what it does and how valuable it is. Talked to my tour director Dr. Powell by phone and he told me to get some Niacin">i as well as B5 and B6. (And the hilariously-named Horny Goat Weed as well.) I had a hard time remembering what that does. I wrote it down but brain fog is buzzing in my head lately. I took some time to read the web site that Ines Neihaus put up about her encounter with Samonella endotoxini.

1st day of 7th Tini pulse: first one on INH

I thought I'd mark this startup of my first day on my 7th tinii pulse, and the first one I've taken having added INHi (currently at 150mg). I have no idea what difference being on INH will make, if any. Theoretically, one would think that it's increased potency for Cpni might drive more RB's into the cryptic phase than the other abxi I'm on, making for a bigger die-off reaction on the Tini.

I had about three days last weekend on the INH of feeling a surge of energy and mental ability, then during the week the endotoxini reactions (cold, fatigue, ache) came back. Today on the Tini I had some wave of aches, but feel a bit more energy buzz as I often do in the first hours of a pulse, before the toxin release gets too bad. At least I know that a Vitamin C flush on day 3 usually does the trick. I'll report in as this pulse continues. 

Highest Order Swamp-Dweller

Taking Marie's admonition to heart I am reporting while measurable achievements are fresh.  That sentence being one of them to compare to a year ago.  Day 1 of my 18th pulse I began my daily pushups (only 10) and situps again.   I stopped these last year due to lack of interest and inability. I can only manage 10 situps but I'll get back to my old 25 soon I hope.   My run/walk was suspended for a few days (still suspended)..  Early in this pulse (day 2 or 3) I could only do 5/8 of a mile instead of a mile, and it took 20 minutes or so.  Now, on day 5 I am wobbly (to borrow a phrase) and not sleeping well in spite of taking 1 1/2 melatonin">i (I believe these are 300mcg pills) last night.  There is no doubt that for about 10 days my body is at war and my mind is fuzzy - as opposed to foggy.  In other words, do not be alarmed at regression during pulses- the rewards are huge but not instantaneous.

The March of Cpn out of my system?

While the myalgia I initially experienced seems to have calmed down.  It appears my chronic sinusitusi has flared up in full force.

If I am not experiencing complete congestion, I axperience a constant burning post-nasal drip which burns the back of my throat.  I know I am clearning the organism but whish it could be more comfortable.

In the olden days, I would have used pseudofed or an antihistamine.  Not sure what to do here.

By way of Hx.  It was chronic sinusitus and feelings of dizziness, fatigue and disorientatation that first sent me for an MRI.  It turned out to have multiple demyelinationi in al lthose MS type spots.   Two years later I got my first undeniable attack.

I am also sleeping up to 12 hours a day.  The sinusitus used to force me to take naps but this is becoming a way of life.  I took time off from my job because I was falling alseep behind my desk. 

MRI Results

Results from MRI no. 5 Jan. 21.2006   -  "no worse- stable- WOW" This was on the report from my doctor.  I spoke only to the nurse.   This is 6 months after no. 4  and is news that any PPMSi patient of 10 years would probably be thrilled to hear but I admit to hoping for a really earthshattering statement but this is good progress and we should all be satisfied that an important marker is noted.    For myself I must remember that Sarah went 2 years, I believe, before  HER earthshattering marker.   The main thing is physical progress which goes by mostly forward bounds with a good dampening  during Flagyli.  We will likely accept the offer of the local radiologist (he is actually a rotating radio.) to examine all 5 and see if he embellishes any.  Apparently not even this happens in PPMS cases like mine.    Remember, last month my neuroi said MS lesions never go away.  Sarah has already proven that is wrong.  I would appreciate any comments David has.

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