Start Pulsing?

Hi There!

 

Im thinking about trying my frst Pulse soon and need some advice about how to face it.

 

first my recent development: since my last entry i finished levofloxacin 2 x 250 mg + doxyi 2 x 100 mg   (total 4 weeks), and 10 days ago i switched to doxy + roxi + amoxicillini-clavulanic (for utii bugs + ebi)+ caffeine.

 

my main problem (the testicle pain. see my last blog entry if interested. im still hoping for more thoughts about the possible cpni cause of it...) improved a bit after that switch but not really much, and bc i still suspect that cpn is also responsible for the pain, my doc (who does not know much about cpn but is very open minded) and i are thinking about trying the first pulse soon.

though im not sure if its a good idea bc reactions are told to get so much worse with pulses? on the other hand i think without pulsing i would be standing quite still bc im not having much herx right now...

 

so here are my questions:

1) should i wait a little longer (with main focus on the pain issue)?

2)if i try it and dont get big reactions would it be a good idea to pulse up to 5 days the fist time pulsing? bc of possible delayed herx?

3) should i take caffeine while pulsing as its supposed to wake cpn from cryptic formi?

4) wich other supplementsi other than the ones im allready taking should i add while pulsing.

5) bc of strong pain reactions (again testicles) i stopped taking roxi and doxy about 2 times in the beginning of capi for about a week. then i took just doxy while taking levo. now, after one mounth levo-doxy i tolerate roxi+doxy quite well: also overall reactions are lower now. could that come from the caffeine or lowering herx? im asking bc i fear a little that my cpn could have built up a little resitance to this drugs bc of my 2 stops? is this really as unlikely as mentioned in the handbook?

 

thanks for every thought and greets!!!

 

mikel

 

Comments

Mikel, It does seem people

Mikel, It does seem people use many protocolsi, but that really isn't the case. I think it seems that way because most of the 'veterans' of this treatment have adapted little additions or changes after using the basic protocol for quite a while.

It's best to use the basic Wheldon or Stratton/Sriram formula for a year or more while you're learning your body's reactions and needs. During that time, you keep reading and researching and learning about cpni and various drugs and supplementsi. Eventually, you learn what your body needs, what it can and can't handle and you make your own educated decisions about additions or changes to the basic protocol.

 It's not wise to experiment too soon; you could end up setting your recovery back, rather than enhancing it.

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

Hello Mikel! Sorry to hear

Hello Mikel!

 Sorry to hear about your condition, scrotal pain about as far from fun it gets Yell  Cry

 

Have you tried Silymarin/milk thistle extract? Natural antiinflammatory (could enhance abxi effect, too) and liver protector, has helped me. There are a few other natural supplementsi that I can't say anything about, but look promising (anti inflam, antimicrobals).

Wishing you less pain and smooth pulsing (if there is such athing)

Borrelia/Cpni arthritis: joint, skin, eye, CNSi, respiratory, UG involvment; fatigue. Borrelia Elisa&WB IgGi, and CPn IgG and IgA pos, HLA-B27 neg. CAPi 5/9/2010 -> 3/2016 2017: some signs and symptoms returning, Borrelia?

whow, 5 abxi contemporarily

whow, 5 abxi contemporarily sounds hardcore! was it your docs idea?
 
yeah, its hard to accept that there is no shortcut. but maybe caffeine is a little one?
 
i just wonder bc i dont have very bad reactions to doxyi + roxyi abxi that maybe i could introduce earlyer stronger bactericidal stuff? its that testicle pain wich is a really ugly and therefore i want to get rid of it asap eventhough that wont be posssible i guess (still not even sure if it comes from cpni...)
yeah i read the introductions and am still reading on, getting more and more questions ;-)
 
its just confusing that people seem to use so many different protocolsi.....

07/2010 Roxi 150 bidi, Doxyi 100 bidi,Metroi Pulses,Naci 1200 bid,Vit D3 + Suppl.

34Y,CF-IDS, IBSi-B (SBBO) >low weight,slight fibromyalgiai,chest pain,very cold limbs and sinusitis since 1999,chronic but slight Epididymitis/Prostatitis>2010

MikelSince I crashed in May,

Mikel

Since I crashed in May, 2009, I have been 500 mg flagyli bidi, along with four other abxi.  The first half or the time was hard , through much of July even, but is lessening.  (See my signature below.)

So, the protocol is up to you, as it is for most of us - nearly all.  If you have not read the Getting Started and the supplementsi list, you really need to.  I feel confident in saying that if you take every day as its own challenge and do the best you can, you will be successful. 

We learn the very hard way that there is absolutely no shortcut.  If you can get Doxycyclin and Azithromycin and then flagyl when it is time, you will do well.    I began with Rifanpin - an undertaking in itself  -  and Doxy, adding Azith a year later.  Cpni website did not exist my first year.

Rica

3/9 Symptoms returning. Began 5 abxi protocol 5/9 Rifampin 600, Amox 1000, Doxyi 200, MWF Azith 250, flagyli 1000 daily. Began Sept 04 PPMSi EDSSi 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan  In for the duration.&am

hi katman! thanks for

hi katman!
 
thanks for replying again!!
 
nice to hear that your almost without fatigue now! :-)
 
since when do you take metroi every day? isnt it to toxic to take it for a long period?
 
my doc unfortunately hasnt got the time to read much stuff (@ least he says, i guess he doesnt really want to, but maybe if really get better he wil get curious.... ;-), but he told me to seek avice here and with that well figure out how to proceed. i other words: he does as i tell him ;-) *gg*.
also im affraid that the physician section doesnt contain much info about the newest treatment approaches like with caffeine?
 
do you know why my blog doesnt show up on the main blog page?
 
thanks!!

07/2010 Roxi 150 bidi, Doxyi 100 bidi,Metroi Pulses,Naci 1200 bid,Vit D3 + Suppl.

34Y,CF-IDS, IBSi-B (SBBO) >low weight,slight fibromyalgiai,chest pain,very cold limbs and sinusitis since 1999,chronic but slight Epididymitis/Prostatitis>2010

Mikel

Mikel

  First, I am not a doctor and only know of this what I have learned from reading and from doing it.  Take your supplementsi every day that you can - they help you in many ways to do this.  Second, if your doctor is open minded, there are numerous pysician pages here (how is his English? - that could be a problem, certainly).   Be careful with the caffeine.   Third, I can tell you that my first pulse was the full 1500 mg for five days, and after that I only did 1125 mg for five days.  I think I did fifty-six pulses and now take 1000 mg every day.   It gets better.  I realize now, almost six years later, that the fatigue and the feeling so awful were die-off,  I have almost none now and it is incredibly wonderful.  

You don't need to pulse yet - it is less than two months.  I believe the protocol calls for flagyli in three or four months.  But hit the abxi hard and without a break.  If your dosage is what it should be, and you stay with it I don't think you will get resistance.

Rica

Other people will be along to share and have better answers than I.  I wish you very well.

3/9 Symptoms returning. Began 5 abxi protocol 5/9 Rifampin 600, Amox 1000, Doxyi 200, MWF Azith 250, flagyli 1000 daily. Began Sept 04 PPMSi EDSSi 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan  In for the duration.&am