some questions

Hi There!

My last entry is quite long ago and as i have some questions too its time for an update.

first the good news: my scrotal pain improoved quite well but still gets worse sometimes while pulsing or after walking to much. right after pulses it gets better mostly. 

my older symptoms are more or less the same though (ibsi-b (with sibo and consequently malabsorbption and low weight), cfsi , light fibro,chest pain, very cold limbs ).

the ibs eventhough taking probiotics even got a little worse i think. im a bit affraid the abxi are messing up my gut flora too much.

if cpni was my main problem shouldn't i have more benefit or reactions after half a year of treatment? im just little scared that i may be one of those who end up worse from long term abxi?

and should i reintroduce caffeine maybe? i stopped taking 200 mg with morning antibiotics @ the end of september ago bc it worsened the scrotal pain.

what about trying to take metroi continuously? apart from little more cfs, the worsening pain and dark urine in the morning (porphyriai?-had a positive poor mans porphyrine test in summer while pulsing ) i dont get real bad reactions from it.

or maybe add niacin">i allready?

thanks for your opinions!

greets mikel

Comments

hi sarah! that sounds like

hi sarah!
 
that sounds like a plausible theory!
 
but maybe the glands are just so weakened by the parasite that they dont manage to produce more stuff?
 
however, i have low thyroid levels for my age, but not below 'normal'.
 
in my case im quite sure most of the cold its coming from the not working gut wich leads to lack of energy.
 
bc when i was on antibioticsi for my small bowel bacterial overgrowth (sbbo) ( i took rifaximin for 10 days. i think its derived from rifampicin and stays in the gut only) , wich reduced my severe bloating quite strongly i also had much warmer hand and feet than usual....
 
unfortunately a second course of those antibiotics didnt work anymore. crappy resisntance! :-(
 
but the cpni could be the cause of the sbbo bc according to the handbook it can lead to intestinal dysmobility wich afaik then can cause sbbo...
 
on the other hand again im sceptic bc other than me most people here dont seem to have low weight issues? 
 

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

I'm suffering from a bunch

I'm suffering from a bunch of problems, including Hashimoto's thyroid disease, chronically infected sub-mandibular glands, and Eagle's syndrome. The thyroid disease was diagnosed first, and so I've come to understand how the thyroid makes the body hot or cold - fast or slow - and when it runs low, everything goes slow and cold - cold as in 'you can't get warm under 5 duvets'. If you feel that cold for several hours each day (or for a stretch during the night), it's the body's boiler syster - the thyroid - that's turned down. (Probably in reaction to the cpni). It was only after a year on this protocol (and long after giving up the standard thyroid treatment) that I began to warm up again. Especially after my sub-mandibular gland infection started to clear, and I experienced the same facial/throat 'remodelling' that David Wheldoni describes on his website.

I can't find anything on cpn and the thyroid anywhere else - but it feels (from experience) as though the thyroid starts to run slow when under attack - from a cell invader like cpn - making the body feel cold, especially the hands and feet. If chlamydia hides in the body's cells, and uses their energy systems, might not 'turning them off' be the last way the body tries to fight the infection?

Hashimoto's disease; Eagle's syndrome; Chronic sub-mandibular infectionsi; 90% improved since starting Wheldon protocol Nov 09; doxyi, azith, NACi + flagyli pulses from 09 to 2012, then made the mistake of thinking I had the allclear. Restarted 3abx protoc

thanks rica for this info

thanks rica for this info and your compassion, its really encouraging!
 
did you have real bad bowel stuff and low weight too?
 
2 days ago i reintroduced caffeine 100 mg in the morning an it has raised my energylevel quite much.(it was very low before though)
 
cant beleve that 100 mg have such an effect. hope its lasting :-)
 
ill stick with capi anyways. just dont know how to pace it and wich one to choose.......maybe the standard stratton protocol + caffeine?
 
 
 thanks! mike

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

MikelWhen I read your last

Mikel

When I read your last post, I was reminded of a blog I had written years ago - "Not cold anymore" was the title.  I looked it up, and it was fifteen or sixteen months AFTER I began abxi.  When we have such extensive depth of infection, that is how long it takes.  I so well remember the iciness and the misery!  I empathize with what you are goinbg through.  Be certain to keep your probiotics up!  I still take a couple of capsules three or four times a day, sometimes more, and eat yogurt once or twice.  Your definitely don't need to allow yeast to get a foothold.

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

You may have more than one

You may have more than one thing making you ill.   Have you been tested for gluten intolerance/celiac disease?   How about enteroviruses?  See: www.enterovirusfoundation.org<.

Best, Timaca

on valtrex 500 mg tid

http://whispersfromthefather.me/<

 

 

 

Hi Rica!   thanks for

Hi Rica!
 
thanks for allways answering :-)
 
yeah, i know it takes time, im just a bit sceptic bc for example i read in the getting started section that for example the limb coldness should improove quite quickly. but unfortunately for me it didnt yet:
 
http://www.cpnhelp.org/expectations<
 

''Another often reported initial improvement is body temperature. Many new patients report an inability to control body temperature: icy cold extremities that nothing will warm or repeated flushing. These symptoms often rectify themselves in the first few months.''

 

thats why i got the feeling that i need to change something, or as Timace suggests to consider other pathogens?

 

hi Timace!

thanks for your suggestions! i allready ruled out celiac desease.i also had many ther tests for gi stuff. the only anormality is the sibo (sbbo-small bowel bacterial overgrowth). i read in the handbook that cpn can cause intestinal dismobility, wich would be a plausible reason for sbbo. but unfortunately untill now i got no benefit.

i think i was testet for enteroviruses in blood without results, but maybe that wasnt enough?

should i try tho get a biopsy and send it in?

 

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

MikelMy feeling is to take

Mikel

My feeling is to take lots and lots of probiotics.  I can't help you with too many of your questions, but can only tell you that many of the bad episodes are all part of this, and getting through them will make you better eventually - really.  When an area is "being worked on", it can be very painful and feel as though it is only deteriorating.  Sometimes, mine went on for months, and then suddenly would go away.  It could be amazing. 

I don't know of anyone who "got worse" on long-term abxi who did probiotics correctly to make certain everything was kept balanced.  There may be someone that I don't know of.

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