dkep11's blog
Submitted by dkep11 on Wed, 2009-12-16 09:40.
Saw my neuroi yesterday... Current state: I was a bit over 6 months in to Wheldon's protocol for MSi(I'm going through my PCP) when I flunked a blood test; my liver indicators, AST and ALT were roughly 3X the high end of the desired range. I suspect Flagyli, but I stopped all Abxi. A followup test 3 weeks later showed they are still high. I saw my neuro yesterday (who I like personally and professionally, but she is very mainstream in her approach to MS) and she agrees with a suspension of Abxi 'til my liver gets back to normal. She says she always thought the root of MS was viral rather than bacterial & so she is unsurprised so see no effect so far.
Submitted by dkep11 on Tue, 2009-11-17 16:01.
I'm about 6.4 months into this antibiotic protocol linked above, and a routine blood test from last week made my doc say Yikes, look at those liver indicators! Let's take a 2-week break from the antibioticsi & re-test. So as of now I'm doing that. You only have one liver, best to keep it happy! So, I'm taking a hiatus for a bit.
Submitted by dkep11 on Mon, 2009-10-19 13:38.
One more Flagyli pill to go on pulse 7! Odd thing: I was having a serious case of bad breath (yes, I brush, and no, I don't smoke) and I looked at my mouth yesterday... Egad - what is all that white crud on my tongue? I'se seen a bit there occasionally; I usually scrape it off with dental floss, but this time, it's like carpet on my tongue... Q: Is this related to all the abxi I'm taking? Has anyone else noticed this?
Submitted by dkep11 on Thu, 2009-10-01 16:53.
Yeaaa - pulse #6 ended about 5 minutes ago! That's the good news. The bad is that I have yet to feel any effects from this treatment. I'm at the 5-month mark & I was kind of hoping to see a tangible effect by now. I'm not hoping to be *cured* (that's a big word!), just to see some tiny reason to think I'm doing something that helps my MSi. I'm losing the faith! I plan on giving this a 1-year trial regardless... I know, according to Dr. Wheldon (http://davidwheldon.co.uk/ms-treatment1.html),
Submitted by dkep11 on Fri, 2009-08-28 08:35.
Pulse #4 done... it always feels so good to swallow that 15th pill!
Submitted by dkep11 on Mon, 2009-08-24 09:12.
OK, I've been whining about the taste of Flagyli for a while now... I started another pulse (I'm doing 5 days on / 12 days off) and I decided to try the pharmicist's suggestion of wrapping them in a fruit rollup... It works perfectly! All the bleacchy taste is contained! Here's how I do it: I cut a 1" square of rollup with the backing still on. I put the pill on at a corner & roll it up diagonally, peeling off the backing as I go. Then I press the rollup into the pill all over to make sure it is sealed. It's still best to take it with a bit of food, but for me, this solves the taste problem. (yes the pills should come coated!)
Submitted by dkep11 on Thu, 2009-08-13 11:12.
Direct from source: Buy some fruit rollups, tear off a piece, and wrap the pill. I just might try this next pulse!
Submitted by dkep11 on Tue, 2009-08-11 00:46.
I'm almost done with my 3rd pulse, and I have a Very Important Discovery to share with the class. One of the worst things about Flagyli is that taste... I had been working on swallowing it quickly, which is sometimes hard for me. I now think that water (my main beverage) is one of the worst things to swallow it with. The bleacchy taste (that makes you say My God I can't believe they don't coat the pills!) is passed to all of the liquid very rapidly. Almost anything else is better. The best I've found is a fruit smoothie, but I suspect any thick beverage would do. This has changed Flagyl from a pill I dread to no big deal.
Submitted by dkep11 on Thu, 2009-08-06 09:24.
OK - when I last posted here I was whining about weakness. And I'm still whining! Ya it could just be summertime heat, though it's been a cool summer so far. I'm between pulses 2 and 3; in fact, I'll start 3 today or tomorrow - I'm doing 5 days on / 12 off of Flagyli. I'm hoping my weakness is a sign that something's happening, and in 2 or 3 months I'll feel better... Q: Is it helpful to add in Calcium Pyruvate during a pulse? If (during a pulse) I'm targeting the CPni in all 3 of its life phases, does it matter if I'm (with the pyruvate) encouragng it to get out of cryptic formi? Hope you're all (in the northern hemisphere) having a great summer!
Submitted by dkep11 on Thu, 2009-07-30 11:17.
I'm between pulse 2 and 3 right now (CAPi for MSi), and this last weak I'm really draggin'. More than usual for me... Several nights in the last week I've been like a slug for an hour or two. And then I slowly bounce back - a bit. Question: Is this typical? Expected?
Submitted by dkep11 on Sat, 2009-07-25 20:30.
Well, since my effects are small from this treatment so far - except for the godawful taste of Flagyli - I went ahead and did my next 'pulse' (a 5 day stint of Flagyl in addition to the usual Dox/Zithi) this past week, from Sunday night-> Friday afternoon. I take 3x500 mg a day, at 4AM, 3PM, 10PM. My marching orders from the doc were to 'pulse' for 5-7 days and rest for 10-20 days between, listening to my body to move the numbers around. This time I did 12 days between the end of pulse1 to the start of pulse2. I was going to do a 7 day pulse this time, but it is tough to do; for some undefinable reason it is very unpleasant, tho I stomach the Flagyl fine. When I hit the 5-day (15 Flagyl pills) mark, I felt *done*!
Submitted by dkep11 on Sun, 2009-07-19 20:57.
I was going to pulse starting tomorrow - my second - but I am weaker'n snot today (even for me!) and I'm having 2nd thoughts... Your thoughts? Pick from these handy-dandy options: 1) Pulse anyway. If you're having a weak spell, you may as well be pulsing. 2) Give it a day or two; it could just be a MSthing. 3) Give it 3 or 4 days of rest.
Submitted by dkep11 on Fri, 2009-07-03 23:36.
I got impatient and started the Flagyli last night. I felt like I was just marking time until I could start (I'm technically 2 days early)... it was supposed to be at 2 months and I started on the evening of my 58th day. Close enough! I was tolerating the other abXi well... a lot of people report feeling sick/nauseous on Flagyl. I'm a bit surprised body weight isn't considered in the dose... I weigh about 182, not a huge number, but it's 50% larger than a 120 pound woman - does that imply my dose should be 50% larger too? Or that hers should be 50% smaller? I'll ask my doc. Most people with MSi are women, and I would imagine a 120-pound gal with a sensitive stomach would be suffering much more...
Submitted by dkep11 on Sun, 2009-06-21 11:59.
Hi all Sorry if this appears twice - I thought I submitted it a few minutes ago, but now I don't see it... I'm on day 47 (just Dox and Zithi), gearing up for my first Flagyli pulse in a few weeks, and I have some questions: I've talked to a couple folks who have been on Flagyl who say it's no fun & you *must* have some food in your stomach when you take it... does that match your experience? I currently take the Dox and Zith at about 4am and 4 pm on an empty stomach... do I take the Flagyl with the other abXi? If/when I do, do I need some food in my stomach too?
Submitted by dkep11 on Tue, 2009-06-16 15:10.
Day 42 of the antibiotic protocol! Being on the antibioticsi (Dox + Zithi) is easy for me so far. The only noticible effect is a good one; more regular #2s. If yer colon ain't happy, ain't nobody happy 8). I have split the antibiotics into 2 groups, and I take 'em within an hour of 3:30 AM and PM. I take (only) 1200 mg of NACi daily; is there reason to increase that? I'm going to visit the doc tomorrow - should I push for a B12 blood test? My biggest issue so far is getting Signature changes to 'stick' on this site! If that's my *biggest* issue I'd say things are going well.
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