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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?

the "easier" pulse

Paul made an entry in which he outlined a flagyl pulse that consists of a 2 gm dose taken at once. The logic behind this was that the relatively short half life would result in a very quick rise in blood level to a higher concentration than we get with the usual 5 day pulses of lower doses followed by a quicker clearing. this intrigued me and not just because I liked the idea of the higher blood concentration, but also because I was wanting a very clear worsening and clearing I could more easily quantify. I've been troubled by the slow building of symptoms at flagyl days followed by the seeming vague recovery. It always feels unsure to me. SO yesterday I did the 2gm pulse instead of starting a 5 day as planned.

I took the flagyl after I had my afternoon client at 2 pm. I went to the gym and did an easy glide (I did not push myself) on the elipse, but had significant trouble walking out. I had not taken my cane so I had to hang on to stuff on the way to the car. Sort of worse than usual. Then I went grocery shopping. OK now we see a real difference. My weak leg was very much extra weak; it was dragging. I wandered around in a fog not remembering what I was intending to buy ( I was at the store for about 1.5 hours! Foggy I tell you) my balance worse than usual and defintely I did not go back across the store when I realized I did not get bread when I was on that side. For a couple of months I've been OK with moving around the store more so that was worse. Then I got home and heated the easy dinner I bought and I got a very clear measure of how this impacts me. The loss of function was exactly like the loss I get in hot water. A hot bath makes me lose the same ground. I could not lift my weak leg it dragged the ground, I kept hanging on to the counters, walls and doors, my legs, both of them, kept losing their hold and halfway collapsing for no good reason when I was trying to stand and stir rice, making me feel very uncertain of my upright status,and I was very very clear about the worsening beause a mere 4 hours before I was "normal".

KK2's Protocol Update-1st Flagyl Pulse

Day 2 of my very first Flagyli pulse and I am waiting for the 'other shoe to drop'. No bad effects so far. On the contrary, the first thing I noticed was that the painful debilitating hamstring spasms were much improved! That's right, within an hour of that first dose I felt better! A wonderful feeling of relaxation washed over my body-particularly noticeable in the hamstring. I suppose it's too soon to make a judgement call, but so far, whoopeeee!

Any theories as to why this was so dramatic? 

Pulse 4 over.

Well, I survived Flagyli pulse number 4. Goddess, am I ever glad it's over. The aches are gone, the brain fog is clearing, standing up better, typing better. I take the weekend on doxi and azithro, then on Monday I add one NACi capsule in the morning. Hopefully the aches that brings will be gone by bedtime, allowing me a peaceful night's sleep. Pulse 5 of Flagyl will start on March 6th. Wish me luck.

Easier pulse therapy

Hi Everyone,

I have a suggestion based upon personal experience for speeding up and making the pulse therapy easier to handle. Since this has only been tried on a single individual it of course anecdotal but having tried this several different ways over several years I am fairly certain this has better efficacy and produces less adverse reactions.

Instead of taking 500 mg of Flagy (Metronidazolei) 1-3 times per day over a several day period. I have seen much better results from taking a single larger dose, typically 1-2 grams. The symptoms of a single large dose are far less than the cumulative effects of Flagly taken for several days IMOi. And the gains made by taking the single larger dose seem much more substantial.

When I started pulsing this way the reaction was very significant. I would have aches and pains and a strong metallic taste within an hour of taking this. However virtually all of the symptoms would dissipate within 2-3 days. The increase in energy and cognitive function is very apparent within a couple of days and the quicker recovery time allows one to take another pulse much sooner. I went from once a week to every other day within 2 months.

I believe the larger doses allow the Flagyl to kill the cryptic formi of Cpni as opposed to simply inhibiting it, difference between bacteriostatic and bacteriocidal. In any event this seems to work an order of magnitude better for me. I actually prefer the 2 gram doses to to a smaller 1 or 1.5 gram dose now but you might want to start as I did with 1 gram and build up to 2 grams.

BTW if anyone here tries this I would very much like to hear their results.

IMPORTANT: There is a lot of data suggesting that high doses of Flagyl are safe but you should only attempt something like like this in consultation with your physician. The recommended dosage of Flagly for Trichomoniasis is 2 grams in either a single dose or divided into 2 (1 gram) doses so I do not think safety is an issue.

- Paul

My dialog with the doctor

I could not find any doctor, who would care about my treatment in spite of the fact I was at many doctors during last year. It appeared to me nearly impossible. Finally I find one, who is a pulmonary specialist. She was the only one, who knew at least something about chlamydia and mykoplasma organism, perhaps because she was been treating hard and long term infectionsi as tuberculosis is. I discussed with her the way of Stratton/Wheldon protocol treatment and told her I wanted to follow this. I told her I already started NACi.
She answered me:
It is not proved that NAC has such a strong effect on killing chlamydia. She doesn´t like doxycyklin for long term use, because it has nasty side effects, eg. vomiting and doxycyklin has only bacteriostatic effect on chlamydia, but ofloxacin kill the chlamydia according to her. She wants me to start with azithro, after some period change to ofloxacin. And add metronidazol after two months. What to say on this? I kindly ask her to study cpnhelp materials. I will reread this server and try to find and print exact articles about NAC, doxy and fluorocholins..

Mid-pulse update.

Day 3 of Flagyli pulse 4. Doing amazingly well. Achey, headachey, brain fog yes, but all manageable. The NACi is five times worse. Sleeping is the hardest part - I ache everywhere so there is no comfortable position :-/

Next month, I go back to NAC, but slowly. Hopefully, the Ester C 500mg and ALA 100mg will help there. I'd try it now, but I'm spent out already. Payday in 2 weeks. I can hold on till then.

My mood is rather good, and I have at least some energy. Typing ability seems to improve late in the day - I still tire easily typing, but hey, at least I can type. That's better than last September.

My new cath, a size 18 French, seems to have solved my leak problems. I still have spasms, but no leaks. Just started a new antibiotic for the UTIi - nitrofurantoin-macro 100mg - so I'll have to see how this works.
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