Formyson... I decided to go to a Rheumatologist after being sick for 2+ decades and getting nowhere with Gis but sicker.
I went to him because I had gotten a microscope and located mycoplasma pneumonia in my blood. I thought it was chlamydia pneumonia originally due to a pic on a site that I now know was labelled incorrectly. I also found something that looked like a filarial worm (I've got a thread where I documented that process)..anyway.. Doc did his assessment, didn't care about
my microscope pics.. And surprise surprise.. He found, Lyme disease, mycoplasma pneumonia and systemic strep infection.. I was floooooored .. ESP with the strep.. Seriously? Nobody has ever tested me for strep? I always thought it weird that I've never had strep to my knowledge.. Well, duh, yeah I have.. Systemically for years and years, likely. These findings were all via labcorp tests so it wasn't as if Gis couldn't have run them. They just didn't.
I also did a diagnostechs stool test in which saprophytic fungi were identified as being in overgrowth.. But no worms, I had found through my scope a biflagellate secondary zoospores from what I thought was some oomycyte but could not narrow down which one.. So this saprophytic fungi finding allowed me to connect dots and then see that these fungi sure can look like filarial worms with empty bodies. That is what the doc and a friend who is a pathologist used to dismiss my concerns.. The things I was finding had no internal organs.. Now I think they may be the stalks/stems of these fungi, not worms... Since verified lab tests say that, I'll go with it.
Anyway, I've now been tested for a slew of confections and these are what we think our players are.
But I'll back up...
I started going to docs at 5 years old. I had my first barium then and they found a constipated colon the size on an adult man presenting as d. They couldn't find anything else said it was likely due to the divorce my parents were going through and I should go to counseling.. Parents tried that, didnt fix anything, I'd rock on the floor for hours my stomach hurt so bad. My step father wouldn't ever let me not eat everything on my plate including my big glass of milk..
Back in the hospital at 11 after collapsing at a mall from excruciating pain that had been building.. They
opened me up this time, wide
open abdominal incision.. Found nothing decided to take my healthy appendix since they were in there, just incase.. Again constipated colon, size of an adult man full of stool.. I had a huge stomach like a pregnant person with very skinny legs and arms..they said I was obese and put me on a diet. message received, stop eating.. This flipped The switch to ibs-d...
Struggled with bulimia and anorexia through my teens. Felt better to just not eat or throw up what I was forced to eat.. Mom finally divorced stepdad, I was able to stop eating the things that hurt me.. Low and behold I'm lactose intolerant.. Started feeling healthy then someone hit me head on and I was put on a slew of pain killers, nsaids, steroids and muscle relaxers breaking everything
open.
Gi tried more steroids and everything else beside biologics as they weren't an option then. I reacted horribly to the drugs gained so much weight, was so sick, and my symptoms got worse and worse. They of course scoped me every which way (colitis, unknown origin) and then each year during acute attacks they would
open me up laproscopically and look around noting all the adhesions from all the surgeries and my raw meat ulcerated entire colon.
Im still so greatful i said no everytime they introed the steroids (they always did that when i was in the hospital and pretty defenseless) and i got worse. I knew they were bad for me what I know now about
what they do to the infections I have makes me shudder and want to track down those docs. After 3 years of that with no answers I said.. Ef this and stopped all medicines and changed my diet and added herbs..
I started feeling so much better and maintained a remission from blood and urgency for many years just by eliminating dairy and eating lots more veggies (marrying a vegetarian helps). Flared again after a round of cipro for an eye infection in my mid 20s.. Didnt have healthcare so diet was the only option and it mostly worked. Still had d and stomach hurt.. Now the classified me as ibs-d again.. Ok for many years until a very very long labor, emergency c section and ridiculous amounts of abx due to a fever of 99.1 that I got during labor. Spiraled down quick after.. Blood, urgency, so much pain... They wanted to take my colon, signed myself out AMA with warnings that I would die and went gf/ dairy free and started cleansing enemas with Castile.
Started resolving the issues immediately and got me functioning again, but still sick, now battling SIBO...And reacting to pretty much everything I put in my mouth including spices. Went grain free, but was eating lotsa paleo treats because I felt so deprived. I had already tried gaps and scd to no avail.. Moved to low Fodmaps and the d, urgency and blood left within 3 weeks. Replaced by constipation.. Tried everything to resolve it but the only thing that helped was warm water enemas. Started back into natural healing modalities and found out about
parasites.. Went on a parasite cleanse and felt a lot better, but the constipation was a daily struggle.. Took handfuls of probiotics, psyllium, acacia, prune juice, magnesium, you name it, I probably tried it... Added beans back into my diet and although constipated still I was going every other day and steadily improving.
In dec my whole family got a respiratory illness ( I now know that is mycoplasma pneumonia in it's cycle). I didn't get a cold like I always did.. I'd usually get whatever first and be sick at least 2 weeks a month.. but my gut shut down this time, the rest of me was fine.
Made an appt with a gi and a rheumy.. 12 and 8 week waiting list. So back on the enemas after 3 days.. That's my rule, I won't let my body go longer then 3 days without eliminating toxins.. Kept up with olive leaf and colloidal.. My body was doing better everywhere but my gut.. Likely because I was killing these things and their toxins were paralyzingly me. We now know I have two MTHFR mutations which mean I cannot detoxify like I should.
Anyway, still no blood, no d, no urgency.. I was eating moderate grains and very low sugar, but still, had added in sugar over the holidays.. But the poop was getting thinner so I started adding colloidal to my enemas and that kept things moving along but my joints and muscles hurt now.
Finally got into the rheumy.. He ran his tests.. I asked for some help in the mean time while we waited for results.. He added triphasa, ferula and apple pectin/psyillium. I was taking proteolytic enzymes, n-acetyl cysteine, proferrin, psyllium, olive leaf, monolaurin, vsl3, pb8 and the colloidal implant enemas at that point and had cut grains but not sugar completely.
3 weeks later we found out the infections above AND a huge piece of the puzzle.. I have one mutation on both a1298c and c677t. My methylation pathways were in bad shape. Ive never really sweat and basically my body cannot handle the toxins produced by pathogens or by their death. He added methyl b12 and l-methyltetrahydrofolate starting at 1mcg and ramping up by 1mcg each week to 5mcg . He wanted me to stay on exactly what else I was on while we waited for the results of my cd57 and interferon gamma to see how my body was reacting after
opening my detox pathways.
I started sweating that day.. I smell so much now, but whatever.. I feel no brain fog anymore.. But I was only going once every couple days still.. Hard dark constipated poop, but going at least.
Tests came back that my body is doing a good job fighting chronic Lyme, mycoplasma and the strep.. He added blis k12 oral lozenge probiotics, anantumal and upped my olive leaf.. Also told me to gargle xylitol 2x per day. Stool test was back and noted mild to moderate colitis was still present.. ecoli is still high along with pathogenic levels of saporphytic fungi and high ammonia levels from all these bugs. Said he doesn't want to put me on abx and asked what my primary symptoms were right now.. I said the constipation and I was sick of enemas.. He said "we have this fantastic supplement that seals leaky gut, will lower you ammonia levels and address the inflammation. Sodium butyrate" I said I've been trying to get docs to prescribe that for years.. He said "no need, go buy it online and take a starting dose of 3000mg a day broken up into 3 servings and paired with l-glutamine and you will see significant improvement within the month"..i was able to locate butyrate that day and now we are 5 days in and im pooping. First couple days my body had loose stool, lotsa bowel sounds.. More dark hard poop.. Then it changed medium brown.. Then it got thicker, firm but not too firm until the holy poop that was Bristol perfect and the right color. I haven't seen normal poop EVER. And that, my friends is my story
Post Edited (PathogenKiller) : 4/1/2013 12:56:42 PM (GMT-6)