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Post originally from velvetvalley85
After perusing Curezone a while back, I stumbled upon this site. I can appreciate that many people have posted very helpful information so I will post mine in hopes that it can help someone as well. This is a list of my symptoms and my story, but hopefully it will turn into a success story. I am still not better, but I have made progress, and I try to hold out hope that one day soon I will be cured. It has been such a long road that and I would not wish this on anybody. My problems started back in 2003 right around my senior year of high school after a trip to Hawaii. I came back from the trip and had a cough; a really bad cough, like the kind of cough where people pause and ask you if you are alright. This continued for about a month or two. Then came a stomach ache. It came on slowly but became more intense over time. My bowel movements also slowly deteriorated. Being a young man who had never visited doctors when I was a kid because I was incredibly healthy, I refused to see any doctors for my problems. Flash forward to 2009, and I'm so sick I can barely function.
-I sleep at least 12 hours a day (I literally come home from work where my performance is suffering and go straight to bed)
-I have up to 10 trips to the restroom per day where I painfully expel what looks to be dirty water, complete liquid, no solid bowel movements whatsoever.
-I have massive amounts of fluid retention in my stomach (as in I can press down on my stomach at any time and it will make these disgusting gurgling noises).
- I have horrible stomach pain, sometimes it feels like a massive buildup of pressure, other times it feels like an intense burn
- My fingernails are completely white
-I grind my teeth horribly at night
-I have really bad anxiety
-My rear end is very itchy
I finally get to a point where I realize that I am dying and I decide to go to doctors. After vising my regular doc and a gastro doc and being subjected to the standard US based testing for stomach problems, I'm diagnosed with IBS-D (with is a complete bullshit diagnosis by the way), given some antispasmotic medication and painkillers and sent on my way (does this sound familiar?). I begin to purchase every book on Amazon I can find with high reviews regarding digestive health and spend hours reading up on the subject online, combing through many many research and medical papers which I can only begin to understand. At this point I have easily spent 1,000's of hours reading about health, mostly digestive health.
One of those books leads me to see Dr. Wangen in Seattle who has a digestive clinic. He runs the Metamatrix tests on me along with some testing for food allergies. The testing for food allergies shows that I am highly allergic to dairy, wheat/gluten, sunflower seeds, green bell pepper and banana. The Metametrix panel shows that I am infected with Strongloydes, a helminth parasite as well as a PPTU (the life cycle of this particular parasite is pretty fascinating; it enters its host through the skin then makes its way to the lungs, hence the cough, then settles in the intestines where it reproduces). We treat the Strongloydes with Ivermectin and the doc tells me not to worry about the PPTU diagnosis as it is likely not a human parasite (It says this right on the lab results and the first doctor who has actually been able to find something wrong with me is in agreement so why would I question it?). In my opinion this is a very irresponsible assumption for Metametrix to make when it is obviously not the case, as proven by all the people on this forum that are still suffering.
Regardless, a couple of my symptoms improve somewhat after the treatment and avoidance of the foods that I have shown to be allergic. My stools become formed for the first time in years, although they still have an extremely fuzzy look to them. The pain is lessened, but I realize that when I cheat on my diet, I am right back to where I was. Treatment wise, I'm feeling better but not where I want to be a couple months later so I re-test for the parasite and test negative- no PPTU, no strongloydes. I figure that something else must be wrong with me so I begin taking supplements. If you name it, I have tried it. Honestly, I have a cabinet full of half or less than half used supplements that all do me little to no good.
Flash forward again to 2011 and I am just feeling a little more off then usual. I go to urgent care where they CT scan me (if the parasite doesn't kill me the radiation from all these damn CT scans I've had over the years probably will). My appendix is ready to rupture so they hook me up to IV's and schedule me for surgery the next day. I ask the doctor to do the open surgery as opposed to the laparoscopy so that they can look around in my stomach to see if they can find any reason for my ongoing digestive problems. Of course, they find nothing, but I figured that if they had to go in there anyways, they might as well take a good look. (by the way, interesting article showing that appendicitis is often related to parasite infection here: http://idosi.org/wjas/wjas4(s)/1.pdf)
The doc relays to me that nothing is structurally wrong with my stomach that he can see so I focus my attention back on some sort of organism/bacteria/pathogen that could still be living inside of me. I look at the possibility of candida but then I think about the PPTU diagnosis and think that maybe there was something more to that. I begin a regimen of massive amounts of herbal parasite cleanses. I'm talking like 6 different parasite cleanses all at the same time. Whether this is a good idea or not- I have no idea, but the very first day my stool turns pitch black with the consistency and look of sludge coming out of me with that and it lasts that way for three days. I expel all sorts of nasty looking stuff that could be worms or could just be particles of food and a few things that literally look like small yellow beetles, legs and all; could have just been my imagination running wild I guess though...
Anyways, about a week in, my stool looks perfectly formed. All the fuzzyness is completely gone and to this day it has remained that way (although it does alternate in color from yellow to dark brown, to reddish brown like indian clay). I become very hopeful, but unfortunately most of my other symptoms do not improve. One noticeable symptom that does improve is my fingernails. They begin to grow completely normal while on this cleanse. However, a month later when I stop the cleanses they go back to growing out white.
Since that time I have tried various diets such as SCD, GAPS, Low Fodmaps, primal, and the McCombs plan with his accompanying diet each for a minimum of 3 months with little to no relief- and I followed each one to a T. The one thing I did notice when I was on the SCD I also completely avoided all sugar (including fruit and honey and other sweet things allowed on the diet) and again my finger nails grew out completely normal. Not sure exactly what to make of this besides that my body doesn't react well to sugar (maybe that is what the parasite inside me feeds off of). If anyone has any insight on the finger nail thing I would appreciate it because there isn't much info out there to tie it to parasite infection- although I am positive that it is related. At one point I tried doing on again off again with sugar for two weeks at a time and my fingernails come out striped. Kind of bizarre but I guess that anyone with these issues has bizarre symptoms.
Thus far, I have completely avoided antibiotic treatments as I was able to treat the strongloydes with Ivermectin which an anti-parasitic as opposed to an antibiotic. I literally haven't put an antibiotic in my body since I was a young boy, around 5 years old. As such, I am probably the perfect test subject as I don't think I would have resistance to any antibiotics, although whether the bugs inside me have resistance to certain ones may be a different story.
I plan on seeing Dr. Cahill shortly (yes, I have read of his weaknesses and shortcomings- I have practically read every single post on this site actually). I know that I will almost definitely get a diagnosis of EH, according to every one else's experiences here. I will take that diagnosis to my regular doctor get the scripts for a protocol such as the one that helped briboy. At this point, I don't want to mess around with small baby doses that have low cure rates. I want to destroy whatever I have living inside me that shouldn't be there.
I should probably add that my significant other from the time also has similar although much lessened digestive problems. She was spared of all the food allergies at least although her digestion is fall from perfect and she does have abdominal pain; albeit not constant like mine. Her problems are mainly neurological, with tingling/numbness on the left side of her body and pain in her back, shoulder, and neck as well as a rash near her scalp. Her problems all started around the same time that mine did as well. Both of us looking to finally kick this thing in the ass so hopefully we are able to do so.
I will keep you guys updated about how everything goes if anyone is interested in hearing it.