Hi there!

Submitted by mikel on Thu, 2010-08-12 18:38
Hi together!
 
First of all i want to thank everyone who contributes to this site!!

only god knows how many people you helped and will help who otherwise wouldnt have even known about this hellbug!

sorry for my english, but im from europe and no english native speaker ;-)

Im male, 33 years old, and at the age of appr 20 i started having severe bloating (ibs-b), cfs (mentally and physically), very cold limbs , about 10 Kg weight loss, acne arround the mouth, chronic sinusitis, mucus on tounge and in the morning on the lips too.
after 2-3 years pulmonary and chest pain symptoms emerged more and more too, and since 4 years i got slight fibro and dry, hurting eyes + eye floaters. so going quite downward for my age eventhough i guess much less than many other people here...
unfortunately i got a very unpleasant symptom more recently wich i discuss in depht more below.

since the beginning of all this i am unsuccessfully seeking the cause of my symptoms (unfortunately not enough, otherwiseid i guess id have found this site earlyer. my fault may have been to concentrate on the main symptom bloating only, and thinking that the other stuff is just secondary to it..) , wich were more or less resistend to every therapy i tried till now. and unfortunately not before getting an epididymitis too recently i stumbled upon the possibility of chlamydia infection. thinking only of chlamydia trachomatis first i went to a lab med who fortunately tested for pneumoniae too. results:

IGA 91. normal < 23
IGG over 500 (wonder how much it really is. would it be iportant to test it exactly?)
IGM 0,1  (why isnt that imuune response working?)

trachomatis: negative
lyme: negative


So i googled right away, found cpnhelp.org, and after reading about the matching symptoms, and that IGG is the main indicator for chronic infection i guess im in the club ;-)

i also think i know where i got the infection from: about the time when everything started i cleaned a big roof from dove excrements without wearing a respiratory mask. stupid me!!! but i was young healthy and didnt worry much about it. and eventhough i told every doc i went to about it (about 20 i guess!!, infectionlogists and pulmologists too) nowone considered cpn.
i guess though the infection came from that cleaning? maybe it could also explain my main physical symptom : ''severe bloating'' bc i might besides inhaling have swallowed loads of that crap? (parasites can allmost be ecxluded as i tested several times for them..)


and heres my main problem:
in february i had a quite painful irrigoscopy where i might have gotten unusually much gas into the colon (confirmed by 2 other radiologists), and which might have caused slight hernia (and therfore an entrance for bugs to the testicles). my testicles also hurt inmids the exam. three days after te exam i felt a slight swelling on my right testicle but then unfortunaltely forgot about it. then i had no problems down there for 3 weeks. only my belly still hurt. when it got better after 3 weeks i started my slight jogging again and got pain in the right groin. the same evening in bed my testicels started to hurt slightly. so i went to the hospital and got amoxicillin clavulanic acid for 2 weeks. after taking it i was fine for about one week. also my skin symptoms got much better and the stool less mushy (eb kill?) eventhough bloating got quite bad.
after  a week i started jogging again (i underestimated the situation quite strongly :-(  and then the testical symptoms came back. unfortunately this time i didnt go to the doc right away, but as symptoms got worse and worse i went after 5 days and had an ejaculate culture done. they found enterococcus 10*5 only sensible to penicillines and leucozytes (trojan horse for cpn down there?). so i got amoxi-clavu again. after 2 weeks symptoms didnt disappear and i got 4g! infusions of the same stuff for 2 days again and was advised to take 3 grams oral per day instead of just 2 for another 2 weeks. the pain almost dissapeared for 3-4 days  (massive eb kill?) after the infusion and then came back again. after ending antibiotics and still having slight pain but almost no more swelling (never had much) i was advised to wait and see. they also said that the testicle pain could come from an injured spermatic cord nerve.

however. i did wait and things began to get worse again. in the meantime i got my cpn results and startet with nac wich gave me strong reactions. after tolerating 2400g  i thought i could start treating cpn as maybe those are acting down there too and took roxi 2 x 150 + Pyruvate. after 2 days i got the bill with testicle pain worse that ever + slight swelling. so i tried just doxy but it got worse with it too. so i stopped cpn meds and my urologist gave me cipro + amoxi against extracellular uti bugs, after i told him i read in the handbook that the cpn die off  might have caused overgrowth of other bacteria in the testicle? the swelling and pain got better for a while, but then it got worse again (still better though than before that last therapy). also my libido got worse and worse too :-(

then another Urologist told me because of the lack of much swelling that it might really be a nervous issue. so i decided to point cpn again an to hold on this time. so i started roxi again, this time without pyruvate bc i thought it might be to heavy with my pain issue. things went quite ok, but after 2 weeks i got prostate pain and pelvic pain symptoms. so i convinced my doc to give me levofloxacin 500 mg (+ 1g magnesium aport from levo.) + doxy 100 bid bc levo would target cpn + other bugs that cause epididymitis and prostatitis. we also added 3 g amoxicillin for eb and the enterococcus. thats what im taking since 3 weeks now + most reccomended supplements. the prostate pain almost subsided an with it most of the libido problems. pelvic pain and testicle pain improved only slowly though :-(
 
also some good news though: my acne and hurting eye symptoms have almost gone allready :-)
 
so thats my situation now an it poses me some questions:
 
1: i recodnize that the pain gets much worse when im hungry wich i guess is a sign for cpn involvment? or could it be other intracellular bugs too(lyme is negative)? i have that theory bc roxi + pyruvate made things so much worse that maybe i fed some intracellular bugs who werent covered with roxi?

2: the first therapy attempt with roxi + pyruvate gave me strong porphyria symptoms + dark urine. the second time without pyruvate it was less. and now i got almost no dark morning urine anymore. so i wonder if levo does the cpn job as well as roxi would? or is it just the missing pyruvate?

3: i read some controversy here about taking caffeine/pyruvate or not with cap. what are your experiences with those supplements? and whats the newest science about it?

4: Has anyone else tried a long term therapy with levofloxacin 250 b.i.d? after reading some horror storys about chinolones im a bit affraid to ruin my joints with it bc eventhough taking Magnesium i have little joint and tendon pain from it. but just very slight and apart from slow swimming im not making any sport anyways now.
 
Thanks a ton for reading all this!! ;-)
 
greets mikel

Welcome, Mikel

Well done and clear.  You should do well here.

As for the quinolones (sp?), I am out of my depth except for the tales written here - they don't sound like the drugs for this protocol.  I am very much a traditionalist and for almost six years have been using exactly what is recommended.  There is no hurry - as MacKintosh says - we want to kill the bugs, not the patient.

You seem to have read a good amount - keep reading.  You will find that the order of adding abx and supps is a work of art, different from those for which your country is noted, but really good nonetheless.  While you are doing all that blood work, get your Vit D checked.  

Your English is more than adequate - no apologies needed.

Rica 

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

Hi Michaael, the road back to health is long and difficult and problem with quinolones is that cpn makes quickly resistance to them, so they are not suitable for long term use. I took double dose ofloxacin (which is the same as 500mg levo) for 6 weeks prior to cap. It was most effective treatment, I have ever experienced, but it was not enough. So I started regular cap then. Dr. Stratton recommends levofloxacin in combination with doxy for maximum one month. (see update 2008). As for pyruvate, you should not take it with only one atb, the combination is necessary. Pyruvate encourages cpn to grow and replicate, so you must be protected against resistance strongly. And yes pyruvate can cause all the problems you described. I too got very sick, when using it. Cpn is very hard to eradicate, so pls do not waste all your weapons against it in the beginning. There are not so many effective atb.

Stratton/Wheldon protocol 02/2006 - 10/11 for CFS and many problems 30 years

thanks for your thoughts! niceto talk to people in a similar situation. gives quie a relief :-)
 @katman:i had my vit d checked and it is quite low. im also substituting it for some weeks now. but im a alittle sceptic bc of the marshall theory...  @Lala: i totally forgot about what dr. stratton wrote about levaquin.but honestly after my bad pyruvate experience im a bit sceptic about his recommendations ;-) he also suggests to start with pyruvate and just roxi..... i think the problem with the pyruvate is that the 6 gramms are symply to much for starters? however, you seem to use caffeine instead of pyruvate now without problems?   my first goal now is to get rid of the testicle pain asap because it drives me qute nuts, and i dont know wich approach is best for it as im not even sure it comes from cpn??thats why im reluctant to switch to the normal protocol. im simply affraid that my prostate gets involved again wich makes even sitting impossible :-(  but i guess ill just have to try. maybe the doxy in addition roxy makes things work better, well see..... any other thoughts, expecially how to clear the testicle pain asap? i think bc it isnt for so long maybe theres a way to get rid of that symptom quiker than the others? maybe i could try a rifa drug sooner than usual?
 

07/2010 Roxi 150 bid, Doxy 100 bid,Metro Pulses,Nac 1200 bid,Vit D3 + Suppl.

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

thanks for your thoughts! niceto talk to people in a similar situation. gives quie a relief :-)
 @katman:i had my vit d checked and it is quite low. im also substituting it for some weeks now. but im a alittle sceptic bc of the marshall theory...  @Lala: i totally forgot about what dr. stratton wrote about levaquin.but honestly after my bad pyruvate experience im a bit sceptic about his recommendations ;-) he also suggests to start with pyruvate and just roxi..... i think the problem with the pyruvate is that the 6 gramms are symply to much for starters? however, you seem to use caffeine instead of pyruvate now without problems?   my first goal now is to get rid of the testicle pain asap because it drives me qute nuts, and i dont know wich approach is best for it as im not even sure it comes from cpn??thats why im reluctant to switch to the normal protocol. im simply affraid that my prostate gets involved again wich makes even sitting impossible :-(  but i guess ill just have to try. maybe the doxy in addition roxy makes things work better, well see..... any other thoughts, expecially how to clear the testicle situaten asap? i think bc it isnt for so long maybe theres a way to get rid of that symptom quiker than the others?maybe i could try a rifa drug sooner than usual?

07/2010 Roxi 150 bid, Doxy 100 bid,Metro Pulses,Nac 1200 bid,Vit D3 + Suppl.

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

I do not use caffeine, I only drink strong coffee with my abx. I had some reactions initially, but not now. I apologize about pyruvate and roxi, you are right, but as I understood, you should quickly add doxy or stop pyruvate.

Stratton/Wheldon protocol 02/2006 - 10/11 for CFS and many problems 30 years

no need to apologize. i apologize for confusing you with katman about the caffeine ;-) its surely better to combine roxi+doxy asap bc of cryptonizing issue....?

07/2010 Roxi 150 bid, Doxy 100 bid,Metro Pulses,Nac 1200 bid,Vit D3 + Suppl.

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