pmitra0123 said...
so pathogenkiller, what is your story? how did you get to remission? did all the tests from 23andme and others help you get to remission? If so, how?
My story starts as a child who never remembers her stomach not hurting. I had my first GI work up at age 5 and have had dxes of IBS C, IBS D, endometriosis, PCOS, fibromyalgia and UC. I've had attempted dx of MS and hashimotos. Ive had one
open abdominal surgery where they removed my appendix just because.. no seriously, that is what the doctor said. "we couldnt find anything but we went ahead and took out your appendix since we were in there so it doesnt cause problems in the future". After GI couldnt fix me they volleyed me over to gynecology where I went on to have 4 laproscopies. I was a bit tired of getting cut
open with no results. I wont even detail all the meds Ive tried.
3 years ago after I had a child I had the worse flare of my life in which I had to sign myself out of the hospital Against Medical advice (and had to fight the insurance company to pay for any of the stay as a result-but won) because they gave me no choice but taking my colon other then maybe to try biologics. I was done, Id had enough of GIs. so I changed my diet, added in some herbs and was able to do alot of healing but I had to stay on a super restrictive diet or all hell would break loose. Plus, I wasnt well.. I was maintaining. My last remaining symptom was constipation. Severe constipation, likely caused by the lingering inflammation in part and all the dysbiosis I had going on not just in my gut, but all over my body.
I decided to move my whole life to a place that was sunny and beautiful and full of the best doctors. That was still dismal for a bit until I went to a live blood analyst. The live blood analyst was pretty much a quack but what that visit did was
open my eyes to the fact that we can see our own blood. No, I cant run my own tests.. but by just observing my blood I had hoped to find some clues.
It took a couple months to come up to speed and have even a modicum of an idea of what I was looking at. Several years ago, I traveled to africa for an internship when I was training to be a midwife so Id been educated somewhat in identifying pathogens through basic microscopy. But I was really only looking for a handful of things, it did give me some basics tho, which Im glad for.
Id seen a few things in my blood that I hadnt yet tracked down but had just chalked up to me having no idea what I was looking at. Until my husband's reoccuring winter cold came back in dec 2012 and he sounded so bad for weeks. Went to the doc and they said he had asthma, wanted to give him a steroid inhaler. I was like, screw that.. and looked at someone else's blood for the first time. Well, he had a ton of one of the things I hadnt identified in my own blood so I thought they were some positive thing.. an immune helper or something since he is usually well. What I hadnt expected was that it was mycoplasma pneumonia. I tried 3 more doctors who looked at me like I was nuts.. my husband went to one to try to get them to just run the test. Nobody would.
I finally found a doctor through a friend that took insurance (yay) and forayed back into western med.
He changed my life. For a bit Id been focused on Mycobacterium Avium Paratuberculousis, but Id never really had sight into the diverse amount of pathogens that can inhabit and effect the human body. Id also never been tested for most of them and my genetics had definitely never been tested. Doc found I had MTHFR 1298 and 677. Being compound mthfr severely impacts your methylation cycle. My homocysteine was high too.. so he treated but that was as far as he got into epigenetic regulation. However, he identified I had several pathogens that were actively effecting me including Borrelia Burgdorfi, Mycoplasma Pneumona, and Streptoccous. Through stool testing we also found significant dysbiosis (high myco spp., prevotella and e coli) and abundant colonization with an unidentifiable saphrophytic fungi. Additionally my platelets were low, my wbcs were borderline low, my cd-57 was low, my anti interferon was high, my ammonia was sky high, I was producing significant anticardoplipin antibodies. My calcium was very high too, sed rate was only 11.. these are all important numbers with my pathogens. My liver, ana, yadda yadda.. all fine... cbc mostly fine. If a doc just ran a cbc on me they would have rolled their eyes when I said I was exhaused and all my bones and muscles hurt and maybe tried to refer me to a psych.
I really wanted to stay on herbs. My last and worst flare had been triggered by abx after my child's birth. So we did that for awhile. The herbs did not touch the yeast tho. As the antibacterial herbs worked on the lyme and co the yeast actually started rising (as indicated by rising ammonia levels, increased constipation and skin issues) So, I started on nystatin (and other things like more antioxidants and sodium butyrate-which detoxes ammonia). Nystatin was a game changer. I theorize that the yeasts had webbed in to my intestines manifesting the leaky gut I was experiencing (I reacted to everything, I couldnt eat a grain, even rice ,without paying for it) For the first time, literally in my life, I could eat dairy with no problems. I added back in grains too, except wheat. No problems. Last summer I was feeling better then I had in my life. It had been 2 years since my bottom, 21 months since I last saw blood.. I started surfing, swimming, going to beach bonfires, drinking wine!!! :) and my immune system and adrenals were not ready yet. I got a horrid ear infection that we battled for 12 weeks with herbs and topical abx. No go. So we had to move to abx which I didnt feel helped the ear. Then finally to diflucan. Jackpot. It was a yeast ear infection. I flushed the ear and kept on the diflucan and azithromycin.
And things I never thought could resolve started resolving. I started waking up on my own in the morning, rested and refreshed. (Im chronically tired from years of sleep interrupted by UC or children).. my joint pains went completely away. That sciatica I went to the chiro for 2x a week for 3 years? Gone. The pain in my hip joint that the chiro told me was from one leg being shorter then another.. gone. And I had to really go back and dig into abx and what I really thought about
them and why they could be the devil for some people yet be a tool. I also cautiously waited to flare again. Ive had so much stress this year. My father, MIL and grandmother all passed this year. We launched a new business this year... young children challenge me in patience and night sleep...but Ive been good. So this summer will mark 3 years since Ive seen blood and 15 months since I got rid of the lingering inflammation and constipation, the last of my UC symptoms. I now have normal, once a day poops that are bristol perfect, lol. I dont take any rx meds for my UC. I do take vitamins and supplements. Through the process there have been lots of supplements. I feel very lucky to have a doc who is a PHD in immunology and has a background in aryuvedic medicine. It took a Rheumatologist to "cure" my UC.
So that brings me here. My backgrounds are technology and education. Because I am a trainer, my heart wants to share my story and give people hope that there are other ways beside the status quo. I stay around healing well for that purpose.
Yes, since Im logic based, testing appeals to be very much. It definitely helped me get to where I am. 23andme has been very interesting because it is very new science. There arent alot of people delving into epigenetics expression and regulation. Amy Yasko has published the most on it, and she has the actual UAA tests and other tests to collate her findings so I use them as a framework, but there is alot she doesnt get into. Many people from various forums send me their data and since I love databases, I collate it and look for patterns. When I see those patterns I go tear apart the enzymatic reaction related to it. I love getting into the details of a reaction because its not like a symptom or even a test interpretation. metabolic processes happen an exact way, so if you can identify a possible pain point in a snp it can tell you more then the presenting symptoms.
That's my story.
Post Edited (PathogenKiller) : 4/8/2014 12:17:47 PM (GMT-6)