update time

 

       

June 18, 2007              -           started taking azith 150 MWF & doxyi 200

 

June 19, 2007              -had a day, can’t remember much, trouble falling asleep, then didn’t get out of bed until 1:30 pm on 20th, ate, just tired

-         niacin">i flush & hot flashes though less frequent

-         ringing ears from time to time

  

June 20, 2007              -  increased NACi to 1.5 gm am & 1 gm pm

- another Azith day, at nite liver tenderness about  a 7

-         brain fog about 8, this is my 2nd attempt at getting my progress on Word to be saved

-         just when you think you are doing ok, then BAM, tired about 7

-         pain levels have decreased to about a 5

-         eyes twitching & sore

-         ringing ears from time to time

 

June 21, 2007

-         had to sleep a lot – 12 hrs at nite

-         feeling very tired in afternoon & some tenderness in liver area, lower rib cage

-         pain in arms, muscle twitching

-         sun lamp rash (due to abxi warning, need sunscreen so will have to make sure I continue ramping up the  Vit D

-         very bad gas & bloating, very little time between vits, abxi & food to do more than 1 Vit C flush

-         pain, center lower back & liver area

-         Hot flashing, most of them very sweaty

-           

June 22, 2007

-         sore neck & shoulders, arms

-         afternoon tired, tenderness in gallbladder

-         another niacin flush

-         scalp issue, itchiness & flaking continues for along time now

-         right knee sore

-         ringing in ear less frequent

-         Hot flashing, most of them very sweaty

-           

June 23, 2007 

                                    -           sore neck, low & upper back   

-         right knee sore

-         very bad gas, took some charcoal, no difference

-         tenderness on rite side lower rib cage

-         Hot flashing, most of them very sweaty

-           

June 24, 2007

-         very bad gas, took some charcoal, no difference

-         tenderness on rite side lower rib cage

-         not a lot of energy, slept a lot,  lay low

-         Hot flashing, most of them very sweaty

-         Side calf muscles that go to foot both cramping

 

June 25, 2007

-         Azith day, added 125 mg 1 X day Metroi(maybe too early for pulse)

-         Liver & gallbladder tenderness

-         Terrible gas developed  by noon, bloating

-         Took 5 charcoal caps to see if it helps with porphyriai<

-         Hot flashing, most of them very sweaty

-         Fuzzy head, more malaise today

 

June 26, 2007

-         bad sleep despite meds

-         headache, sore rite knee, rite hand down to pinky (similar to a few weeks ago when I got an arthritis lump on the left pinky knuckle, elbows, rite calves cramping up

-         very gassy, bloated again

-         tomorrow will start taking doxy at nite meal (mite help with some of the gas?)

-         based on the horrible abdomen pains I had in last week of Mar & into April could be a sign the Cpni was there & these blow up reactions are in fact porphyria & the abx is working

-         thought, as recommended- going to build up azith & doxy before starting with metro- maybe wait for end of August

-         chest sore, rite side at side of breast area & gallbladder very sore

-         Side calf muscles that go to foot both cramping

-         White spot on rite side of my eye, out of the corner

-         Sat about 10 mins in sun & took D3, may be partly responsible for a lot of my reactions today

 

June 27, 2007

 

-         today is a everything is falling apart day

-         sore hips (mostly left) elbows low back – everywhere

-         very hard to get out of bed, did some weed pulling, stretched out my low back

-         gallbladder soreness worsening as day goes on

-         have most of yesterday as repeat, except no eye spot today

-         brain fuzzz

 

I am wondering, is it better to pulse more often or wait for the recommended few weeks as indicated in the protocol?  I am worried there might be soo many critters floating around in my blood that I am going to get hit by a truck with my first pulse.

 

The D(up to 5 gel caps), NAC & Azith & Doxy have been doing what they are supposed to.

 

Thanks everyone.

Comments

thank you Ron & Michelle for

thank you Ron & Michelle for the advice, I really appreciate it.

I have been looking back into Willows records for an example.  Well, patience hasn't been one of my greatest virtues, however, time & God are teaching me well.  I don't want to kill myself killing critters.  I think I understand what Ron means about pulsing too soon, recovery for me can be affected by hormones, weather, sleep, exercise etc. etc.  I may need to sort through alot to figure out when I am "recovered" from a pulse.

TIME, PATIENCE & COURAGE, not necessarily in that order Tongue out OK then.

Blessings

Ruth

CFIDSi/ME, FMSi, IBSi, EBVi, Cpni, Babesia, insomnia (sleep- melatonin">i, GABA, tarazadone, temazepam, novocyclopine, allergy formula, 2 gm tryptophan), Natural HRT peri-M, NAC 2.5 gm, Doxyi 200 mg day pm, Azith 250 mg M/W/Fday

CFIDSi/ME, FMSi, MCS, IBSi, EBVi, CMV, Cpni, H1, chronic insomnia, Chronic Lyme, HME, Babesia, Natural HRT-menopause, NAC 2.4 gm,Full CAP 6-2-07, all supplementsi+Iodorol, Inositol-depression, ultra Chitosan, L lysine Pulse#27 04-19-10 1gm Flagyli/day-5 days<

Yes, Ruth, it sounds like

Yes, Ruth, it sounds like you might want to go a little slower. It took me more than a month to get used to zithi, another month adding the doxyi. It was three months total before I took my first Flagyl.

 Stratton estimates 3-5 YEARS to complete a CAPi -- not limited by the drugs' effectiveness in killing CPni, but by the body's need to recuperate from the toxic effects of the CPn dying. In other words, there may be drugs that could eliminate CPn in a week, but you'd be dead from "toxic shock."

Killing CPn isn't the bottom line, not really. Getting better is the goal, and it will take 3-5 years, regardless.

Since the limiting factor isn't the killing of CPn, but your body's ability to repair the resulting damage, it might turn out that the slower the start, the shorter the overall time. Who knows? It will be years before even enough anecdotal evidence is collected to make a guess.

Which brings me to the latest guesses regarding your actual question: it looks like if the brain itself isn't infected (MSi, mainly), then a shorter recovery time may be OK. My doctor had me do a short enough pulse that a 7 day recovery was sufficient; i.e., two-day pulses until I was fully recovered in 7 days, then three-day pulses until I was fully recovered in 7 days, etc.

That was as aggressive a pulsed schedule as I've heard of. I am up to pulse 35 or more in 18 months (I lost count in the course of moving to a new house.) Here's what I can tell you: one disadvantage of that schedule is that it's so difficult to judge your progress. You're constantly either in a pulse or recovering; you're never 'normal' long enough to see what's changed.

What I can't tell you is what would have happened if I'd done it differently. 

Ron

On CAP for CFSi starting 01/06 (NE Ohio, USA)

Currently: doxy & zith -- continous; metronidazolei -- 5 days on, 7 days off.

Get the research results you paid for: support Open Access

Ron

On CAPi for CFSi starting 01/06 (NE Ohio, USA)

Began rifampin trial 1/14/09

Currently: on intermittent

It is tempting when you feel

It is tempting when you feel you have a lot of parasites inside you to go blasting at them with all your guns at once. But the idea is to be able to sustain this treatment for the length of time it takes to get rid of the little beasts.

If you go too fast you may well get yourself into a porphyric loop that will mean to have to stop altogether. It would make the CAPi unbearable... The Doxyi and Azi, as well as stopping the replicating do kill off some of the Cpni and the infection will not get worse during that time. You will be forcing more Cpn into the cryptic survival form which you will then address when you do the Flagyli, they will wait in their death chambers until the executioner comes. Now the idea is to get the executioner to come gently so that not too many are killed at once. It is difficult to tell how large your load is, but the first pulses are likely to be the worst whatever your load. So gently at first so that your system can cope with all the dead critters, whatever your load there are likely to me more killed in the early pulses as the law of diminishing returns might well apply here.

I have heard the following words often and repeated them myself: patience and courage.

If you want an illustration of what might happen if you go faster than your body can tolerate, your might like to track Willows progress... here <

She does not write in many words so it is easy to get the feeling of what happened to her. Start with the older pages and work forward...

Michele (UK) GFAi: Wheldon CAP1st May 2006 . Daily Doxy, Azi MWF, Flagyl at 400mg for 7 days prior to 5 day pulses at 1200mg three weeks cycle. Spokesperson for Ella, RRMSi Wheldon CAP 16th March 2006

Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse.