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Roller Coaster

(On DW protocol from Nov05 for MSi)

Feel I'm on a roller coaster. Just started 3rd Flagyli pulse. Took a longer break from last and it took about 16 days before I picked up from it. After a 4 week break and preparing (mentally!) for 3rd pulse felt return of old symptoms and got concerned about relapsing. Started pulse yesterday with 2x 400mg and have had 2x 400mg today (take 3x 400mg for 5 days) - surge of syptoms and headache now just 24 hours in. I don't know what's going on, and feeling a bit depressed over it all. What pattern do you guys experience? Does Flagyl affect you quickly or are you left with a 10 day post-pulse of feeling rotten? Both?? I thought I'd start to understand the pattern with the 3rd pulse - but it's different this time. R.

Getting ready to do battle.

OK, Flagyli pulse 5 starts Monday, two 500mg pills per day for 5 days. Probably late in the week, I'll get more supplementsi - Omega-3 and omega-6 essential fatty acids, Quercetin, Alpha Lipoic Acid">i, Vitamin Di-3, Folic Acid">i and Coq10. These should really help. While I'm pulsing, I'm off NACi, if that's ok? I'll already be feeling like crud; no need to make it worse.

Only a little Gloom

As I was disconnecting the computer, I realized I was becoming disconnected and that I had better come back and say a temporary farewell from the front lines to retire from active duty for 10 days or so.  Last night my legs were shimmering and glowing enough to keep me up  for hours.  This has been happening more and more clearly since I first noticed it about Nov, 2005.  My cycle seems to be about 18 to 20 days so I listened and began Flagyli number 20 - 375 mg 3xd - Fri am instead of Sat.  Obviously a day or so in time doesn't matter but the symptoms may help clarify the way for others.  The other points are that the gloom is settling in like a mist and I know it won't lift entirely for at least 10 days from now.  The other is a slight nausea which I think I have successfully pushed into the background for  a long time and will,  I hope, continue to do.

Doing quite well at the moment!

I just thought I would annonce that I am doing quite well at the moment.

I am currently taking Lamisil and Fungizone (orally) which are both antifungals.

I have been taking these for about 4 months, and I am noticing improvments all the time.

I am sure now that much of what has been holding me back has been fungi. This is not too surprising considering the battle against bacteria I have had, and considering all the abxi that I have consumed.

My gut feeling is that everyone who has been through these wars, should also consider a trial of antifungals. To see if this is a factor for them too. I killed the bulk of the bacteria that caused ReA around 2001-2 but I have limped on since then, mostly with a comprimised immunei system I suspect due to fungi. No diet or lifestyle changes seemed to be able to resolve this alone.

The Dark Months

I have been feeling bad for the last 3 weeks or so.  My spasticity has increased soo much.  I am feeling like I am in an exacerbation now.  I have been doing the protocol since October and have only done 2 pills of tinidazole. 

 

I am wondering if any of you really "feel it" during the months of February- march and then again in August.  Those are my worst months and my best are Sept and October. 

 

Is the bug replicating during these "dark months"?  I don't know but I am scared to do another tini pulse now while I am feeling soo bad.  I have that 'kissed by a dementor" feeling and have no energy and major fatigue along with increased spasticity.   Prior to this protocol I used to have to wait until March was over to assess the new damage that took place.  Maybe this year I won't progress. 

The Day After Fred

Okay, I won't use "Fred" after this blog to refer to the single high-dose pulse. Must be my judgement returning! Did the pulse Monday, today is Wednesday. Except for some logginess on waking up, today has been a regular day, no particular aftereffects as I had yesterday (pain in knees was significant). Don't know if the gliSODin had anything to do with shortening the effect or not, or if it was just the single dose pulse. I would say it was rough but short in activity, and I am likely to try it again and see if this experience repeats.

Not doing well at all...but hanging in there...

Hello guys!  I had to get off all medications for a while.  I have been dropping weight so rapidly that it's scary!  Micheal wishes he can break out the wand and just take it all away, but he knows he can't.  My "hungry" has been turned off I told him.  It's like my body has lost it's will to live almost.  I lost another 4 pounds in two weeks and counting.  Dr. Powell came into our appointment yesterday and told Michael to put me on Doxyi to get my appetite back.  I am going to try once again to drink ginger ale.  A car hit me while I was at a complete stop so I have been feeling pretty bad lately.  Then three days later I fell on my back on a tree stump coming out of church right after the rain and re-injured the area where I was hit by the girl who had her license for only a week.  No damage had been done to either car and I let her go.  She was hysterical poor girl.  I hugged her and let her go.  I know that sounds crazy, but I get so much mercy I had to give it.  I don't know what is going on with my body other than it doesn't seem to want to live, but you know what God has other plans for me either way.  Whether I am to stay or go it will all work out for good.   Honestly I am torn I want to go home, but then again I want to stay and help. More maybe later...  Jim thanks for writing I am doing okay.

End of Day One Fred

I first posted this in response to Paul's comments on another thread, so I'm just repeating it here so it's part of my "Fred" blog. Here's how I've learned to sort my reactions out in terms of my own experience, correctly or not!

  1. Endotoxini reactions seem to typically include feeling chilled, cold, cold hands and feet, and so on. Dr. Powell had a great biochemical explanation as to why this is so, for the life of me I can't recall what it was. I just remember it as typified by chill, cold extremities and peripheral vasoconstriction.
  2. Cytokinei (immunei) reactions are typified by inflammationi, consequent pain, swelling or congestion of tissues, and cascade of other responses like histimine release and so on.
  3. Porphyric reactions seem typified by a feeling of loggyness, depression or anxiety, nausea, disorientation, discoordination (when not caused by loss of muscle control function, see below) bowel disturbance, fatigue, hypersensitivity to light, sound and other stimuli. You note, Paul, that the porphyrins also bind to nerve receptors, especially GABA receptors, and thus interfere with the modulating functions the correct neuroransmitter would perform, hence increased pain sensitivity and anxiety and depression (both modulated by GABA). But increased pain sensitivity is not the same as pain-causing, and I know inflammatory pain feels quite different from hypersensitivity.
  4. Cell deathi seems typified by loss of baseline function (eg worsening of hand function in MS), pain, and so on followed by slower recovery and then improvement above baseline. 

 I see this in my reactions to the Fred pulse. When the dose hit a couple hours after taking it, I started to feel increased chill and cold despite all the things Dr. Powell has me on to counter endotoxin which usually do well to counter these symptoms. Then I had a rather rapid porphyric response (over the next hour or so) where my coordination, mental focus, disorientation really increased. Mac noted how visible my typing problems were on the chat. What they didn't see was how many times I had to type and retype a word before I could complete a sentence, and that poorly spelled and error laden even so.

Had to Start a PRN Albuterol Inhaler.

Recently started wheezing.  Had not needed an inhaler since I had an episode of pneumonia in the late 1980's.  Just needed ita few times in the past couple of days but found it interesting.

 

Anticipating Number 20

Anticipating number 20 Flagyli.  Only at the beginning was the cure worse than the disease, but now with eyes wide open,  I march into battle with the knowledge of the gloom to be   I think that is KK2's perfectly chosen description.

Last installment the feeling was just beginning to return to the right  side of my torso after 10 years of at least 90% numbness.  I have done my sit-ups and push-ups most days in hopes of helping this and it must have been doing some good because  very suddenly I can feel my abdominal muscles.  Consequently, more  movement is more under my control and my walking is better.   I feel a little more like me.

 This  last round of Flagyl has dramatically demonstrated the flat "gloom" brought on by it.  The whole week after, and really probably 10 days, I think I am coming back, but this is Tuesday and I am only now leveling out and I begin all over again on Sat.  I think once you know that you are not whirling into an emotionless, bottomless depression you are better equipped and can hold on to the fact that this is a passing part of the treatment.  My mind was apparently very affected by this disease (mostly past tense) which may account for my extreme fog.  I cannot believe how far back I have come, particularly in the 4 or 5 days before the next Flagyl -  "blue sky days" in Macks words, I think. 

Day One: my Fred

Okay, I had to try it too. A Single High Dose Pulse (otherwise known as a Fred). I hate the term "easier pulse" because it's misleading as our reactions are going to be different, as we've found. I took 1.5 grams of Tinii last night, along with ibuprohen, vitamin C and sleep meds, anticipating a pain response. I have also had 2 days on gliSODin, a high potency antioxidant">i which Red has described elsewhere as helping to counter his Flagyli side effects. I have no idea if the gliSODin has made a difference in this, as I have not felt the distinct effects he reports.

What I do know this morning is that I woke up feeling rather good, a bit foggy and achy, but no more than normal and with more underlying energy. I must say that last night when the dose hit before bedtime I had major red and burning eyes, huge fatigue, mental confusion (I found myself in the midst of a number of activities with no clue what I was doing), and burning aches in shoulders and neck.

Recent Herx Reactions or MS Relapse?

The NACi flu has subsided a bit.  Now appears to be cyclical or intermittent.  The sinus drainage continues as never before, do not want too get graphic here.

For a 2 weeks, I have had bilateral fingertip pain, numbness, tingling and a band of pain, numbness and tingling that goes 3/4's up my R arm. 

This is odd because it is the mirror image of some of the symptoms in my initial MS attack, which initially took 4 months to subside.

I persist because I have an inner knowing that I'm on the right track and

I'm getting out of this miserable disease.

 

 

KK2's Protocol Update

Day 5 of Flagyli pulse. I took a 1 GM dose two days in a row. Biggest changes noted are discoloration of my lower legs/feet, more so in my "weaker" left leg. Noted feeling of movement in sinuses, more congestion, especially after 1 GM doses. Huge reduction in pain of tight hamstring, so much so that I am almost afraid it will return if I stop the pulse. Never did I ever dream that a Flagyl pulse could be helpful. KK2 :)

NAC and me

I did 0x30 (48) knee bends yesterday, and it wiped me out. May only do 0x20 today. I need to stretch my tendons to stop the fierce toe-drop that prevents me from walking.

I've been taking one 500mg NACi pill, with 1000mg vitamin C and two extra-strength Tylenol, after breakfast, and it's still hitting me hard. Achey, headachey, stiff and sore muscles - feels almost as bad as a Flagyli pulse. I'll stick with it, as I understand it's helping me beat CPni, but it sucks pretty badly. I won't be going to two NACs any time real soon.

Doing ok using a spoon to eat, but last night's spaghetti dinner was well beyond my fork-handling ability. Getting the stains out of my tee-shirt will require a lot of bleach. My dexterity, as well as my grip, still need much work.

So far today, my typing is acceptable.

What about a herb called Cumanda?

Been treating fibro symptoms with a high Cpni titer for 10 mo. now. I did Cipro for 3 mo. and Doxyi for 3 mo. All along I have had no change in my CpN titer. My doctor has switched me to an herb extract called Cumanda to take a break from antibioticsi. Does anyone know anything about this?
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