Hello all,

Before reading my posting please be prepared for something unorthodox for this site. It is all related to my personal experience, which might be very different from yours.

I met today with two good friends of mine, who are doctors in local hospitals. One is infectionist, the other internist (maybe it's not the right term - he's dealing with the internal organs). The latter is really open minded.

They are both very skeptical regarding the duration of the treatment and the die-off reactions.

After discussing my evolution for 2 hours, they came up with an interesting hypothesis.

What if the cause is not chlamydia but a fungus of the microsporidia genus or something similar, maybe even unknown to the medical community yet?

Hello all,

I would like you all to share your experiences with alternative remedies.

The idea of taking antibioticsi for years with few hopes of getting cured scares me to death.

A word of encouragement?? I haven't checked in for quite a while. Been doing ok, but have been undergoing Vitamin C IV treatments for 4 weeks followed by Rifampin 150mg twice a day for 4 days.  My energy is zapped and the Rifampin feels like poision to my body.

My urine culture came back showing S. saprophyticus which will not be stopped with the Cephalixin I was taking. The nurse called to say I need a sulfa med. The doctor RX'd me SMZ/TMP DS 800-160. I had no clue what it was so did a little search and found that it is double strength Bactrim. I read here that it kills Cpni. I am thinking ... UH OH. Is this something I should do? I am suppose to take one PM and one AM until gone for 7 days.

This is the news:  In England, possible antibioticsi to be sold over the counter, to treat CHLAMYDIA!

This is the story form http://www.guardian.co.uk/society/2008/aug/06/health

Oral antibiotics are to be made available for the first time without doctor's prescription under guidelines approved yesterday by the medicines regulator.

A pill to treat chlamydia, the most commonly diagnosed sexually transmitted infection, will become available for purchase in pharmacies across England later this year.

I have been monitored for microscopic blood in my urine since early 2000. The doctor I was treating with back home always seemed to believe it was due to celiac/gluten intolerance as we could never find anything conclusive.... hmmm.. cpni???

I am now out of state with a urologist who has been treating me for 4 years.  Every time I have had an appointment there has been blood in my urine.  

 I just came from a visit with her (my urologist).... all has been tested (cystoscopy, kidney x-rays, urine cytology). Today, I pushed her for a "what are we going to do or conclude" about this?  The only confirmation that we have is that:

1) there are no cancerous or squamous cells; (which is great)  and,

I started CAPi with Minocycline 100mg x 3 + Rifampin 300/day only to stop it due to huge reaction. My dr was thinking in the lines that's one of the abxi causing side effects, perhaps the Mino. Soon I re-started only with Doxycycline 100 mg x 2/day. At first it was OK but I had abdominal pain, aggravated hypertensioni, hypoglycemia and porphyriasi again and by 10th day it was too severe for me to continue. I mean, I felt like it was life-threatening at the time.

I stopped Doxy a week ago yet still haven't recovered completely. Today I feel that like I was hit very hard on a head but a bit better in general.

This week has been one of depression/frustration.... probably due to my impatience and lack of control.  But also because I don't understand what is going on with my body and this bacteria!  Family members keep looking at me at asking "when are you going to get better"... I stopped trying to explain. Having to use a wheelchair this week -- I've experienced the stares from people and small children and now understand what those of you with MSi must endure from society.

Multiple Symptoms, here is my diatribe!!  I am new to the site & I have Fibromyalgia-FMSi, Chronic Fatigue Immunei Deficiency-CFIDSi/Myalgic Encephalomyelitisi- ME with the usual cornucopia of underlying symptoms, crashes, flu like symptoms, migraines including CPNi, Babesia & recently hereditary Hemochromatosis. 

...only time will tell as I get set to embark on my eighth pulse. It was a bit harrowing to get prepared for this pulse as my initial six month prescription for things had run out and I had to get them renewed. Either the pharmacy or the doctor's office messed up and it took a day longer to get them all renewed. I was a little worried there but it was for naught and I was quite relieved to pick up my prescriptions in time to start tomorrow.

The following is a condensation of a slightly longer post which can be found at this link.

Jim K