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My mid thirties were a very hard time of my life. I had just been through a vicious breakup. My fur-bestie and true companion, Edward was diagnosed with feline cancer.
I made very little money in my full time job and was already under water trying to pay my monthly nut and so I had to take a shitty night job selling vacations in order to help pay for the vet bills I was accumulating trying to help my kitty get better.
To say I was depressed and stressed was an understatement. I worked full time, drove home on every work break I had so I could spoon feed my cat who was barely able to eat on his own anymore. One day when he was laying outside in the sun, I sat down next to him and saw red worms crawl all over the inside of his eyes.
The vet prescribed dewormer and some other meds that he hated taking and that made him feel terrible. I had to put some meds on his paws which he would then lick off and still his paws were stained yellow. He was trying to get better. One day he even ran a little and seemed like he might be getting better.
In the stress of it all, I accidentally set a fire in my kitchen and burned my hand and arm to the point that I nearly lost my hand. I spent the next two months with silver cream and bandages all over my right arm. Trying to take care of my little nugget was even harder after that.
I wanted more than anything to be home with my kitty during this time but then I wouldn’t be able to pay for his care or any of my bills. GoFundMe wasn’t really a thing yet, and I didn’t have any friends to help me since my popular musician ex boyfriend was having sex with all of them.
This doesn’t sound like a parasite story yet, but I need to explain these parts to you so that you understand why once I got sick, every doctor I saw took one look at me and my haggard eyes and decided my problem was depression and anxiety, and that I needed psych meds and therapy, not anything else.
Also, trying to figure out how I got sick, or from what I was sick, was complicated.
One of the managers at my new shitty job was very cute and somehow despite having hollow cheeks from not eating, he took to me. He was kind, helped show me the ropes so that I could earn as much money as possible in the few hours I had to help my cat. He was athletic and full of energy and helped me distract myself from the walls that were crumbling all around.
He had been in a terrible accident when he was younger in which he lost the lower part of one of his legs in a motorcycle accident. I thought it meant he was going to be a person whose character was better having experienced and overcome hardship. I thought, of all the things I needed in a guy, both calves was not one of them. But to him, the leg was everything.
It turns out the guy was really kinda sick and there were a lot of red flags. He talked a lot about revenge stories he enacted on girlfriends who fell off romance-wise for one reason or another. One day at work I was in the break room and I overheard him talking and laughing with one of the other managers about how he bought h pylori on the internet and laced an ex’s drink with it and she had to get a colonoscopy.
I ended things with him and tried to get out of the job as soon as I could. I had to wait until Friday to get my last paycheck and in the meantime I tried to avoid contact with him as much as I could. On Friday he set things up so that he would be handing me my check and low and behold, with a smile, he handed me a check for something like $15.
My cat died in this short time and my biggest regret was hooking up with this guy and letting him take away even one minute of time from my beloved Edward. Shortly after, I started experiencing what can only be described as a feeling of broken glass in my vagina.
At first I thought maybe the new guy had given me an STD. So that was the first thing I asked doctors to check. I didn’t have insurance since before this time I hadn’t ever gotten sick. I didn’t even ever think about having health insurance before.
I had to file for charity health coverage through my county financial aid office and while I was so very grateful it was available for me, one of the extreme downsides was the wait times in order to see a doctor. Just to see the gynecologist I had to wait nearly two months.
When I saw the gyno, I told her about the guy and that I was concerned he might’ve poisoned me. She suggested I need psych meds and that my abdominal pain was actually depression. All STD tests came back negative and that sealed the deal.
Over the next several months the pain grew more intense and spread to other parts of my body. The broken glass feeling inside my nethers was joined by a burning pain in my stomach so fierce it felt like someone was burning me with lasers all over my insides.
I would go to the ER and beg for help because I was either passing out from the pain or bent over in fetal position from it. The staff there treated me like a psychiatric patient or a pain meds addict even though I never asked for pain meds except for GI shots.
I was prescribed every GI cocktail imaginable during this time. I saw a gastroenterologist, had a colonoscopy, an endoscopy, CTs without contrast, CT with contrast, a cystoscopy (that’s where they put a camera in your bladder to see if you have interstitial cystitis), and every other box checking test that well meaning doctors could order. Everything came back normal. Actually, they called my results “textbook”.
I went for a second opinion on the gynecology side of things, figuring maybe I had a false negative on the STD test or some kind of horrible fungal infection. The new gynecologist, a very nice, well-meaning man, diagnosed me with what he was sure I had. Endometriosis.
If you don’t already know, endometriosis is an autoimmune disease where tissue that normally lines your uterus, grows all over the rest of the inside of your body, including your brain. And like all tissue that lines the uterus, it bleeds whenever you menstruate.
The nice, new doctor told me that I would experience this pain for the rest of my life until I stop having my period and that he would be willing to perform laparascopic surgery on me to burn off any of the tissues that are lining my intestines, hopefully giving me some temporary relief.
He also recommended I take anti-depressants. He told me endometriosis is a disease that unhappy single women get. In chinese medicine it is called “working women’s disease”, which sort of rang as true.
Still, I knew that I didn’t have endometriosis despite having painful periods my entire life, and I turned down the surgery as well as his offer for antidepressants. And maybe I did/do have it, but I didn’t think it was what was causing my pain and illness.
By this time I was so sick I could barely walk up the stairs to my apartment. The doctors were testing me for Myasthenia Gravis, which is a disease where your muscles stop working until you finally die of things like suffocation since you can’t breath anymore.
I cried myself to sleep more times than I care to remember. Even just writing this story is bringing back horrible memories of the medical diagnosis terror I experienced during that time.
By this time I had accumulated a pile of meds so big that they took up an entire suitcase. I wasn’t taking them all, of course. They were the various antibiotics, stomach meds, psych meds, pain meds etc. all piling up from the prescription pads of doctors who were trying to help me one way or another.
I remember telling my mom that I think that if I don’t figure out what’s wrong with me very soon that I’m going to die.
I started scouring Youtube. I didn’t know anything about bodies or medicine at the time. Again, I had never been sick before all this.
I put my symptoms into good ol Google and all started watching Youtube videos about them. Parasite videos eventually made their way into my suggested videos and the things that people were talking about sounded so much like me that I decided to ask my doctor to order me a parasite poop test.
I took the test and it came back positive for the Blastocystis Hominis parasite. The treatment was a course of Metronidazole. I thought it was funny because when the whole thing began, Flagyl (the brand name) was the first thing I asked the doctor for and was denied because my vaginal swab came back negative.
I knew enough by this point to do some of my own research first. I started my search on pubmed.gov. I found an article on a study that tested the effectiveness of a novel probiotic called Saccharomyces Boulardii on getting rid of Blastocystis Hominis.
The article said it had a higher effectiveness than the Flagyl with fewer recurrences of the infection reported. I picked some up from Whole Foods for something like $10, and started taking it.
Within a week the broken glass feeling in my vagina, a constant pain I had been experiencing for two years day and night at this point, disappeared completely.
At the end of the week I became very ill and had to go to the ER because I felt like my organs were shutting down. That’s really the only way I could describe the feeling. It turns out I was having an episode of acute urinary retention where so much urine was stuck inside me that it was “the size of a newborn baby” according to the doctor who saw the CT scan.
I was hospitalized overnight and it passed. I believe it was a die off reaction from all those little critters pooping out their toxins at their end and it never happened again.
After that hospitalization I was fine. I got my energy back and I could walk up stairs again without any problems. My chronic fatigue lifted and I got back to moving on with my life.
I started getting IV vitamin drips which helped me tremendously. I had developed a b12 deficiency from trying elimination diets to cure myself. Also, two years of stomach meds really did a number on my gut. I still suffer to this day from poor hydration due to the inability to absorb water as well as I should be able to.
After the IVs I actually got pregnant and had a baby and had a healthy pregnancy which was a miracle since I had never been pregnant before and wasn’t sure if I was infertile.
My gut is very sensitive and I have bouts of gastritis still. I have become a patient expert on gut health over the last decade and have a serious passion for nutritionally rich foods, human health, etc.
A lot of recovered cancer patients will tell you that their cancer was a blessing and I definitely understand what they mean.
If you are experiencing anything like what I went through I just want to encourage you to always advocate for yourself, listen to your body, and keep up hope.
It’s a sucky feeling to be a “patient” but you can get through it. Youtube IS amazing for finding answers and anyone who makes fun of people for finding answers there aren’t giving enough credit to Creators for sharing good information. It does take time to get through all the talking though.
A few helpful tips to avoid parasite pitfalls…
I got lucky and the Blastocystis Hominis was found in my poop (probably because there was a lot of it). Most poop tests aren’t very accurate. The labs just don’t care that much (sorry). They take a teeny weeny sample and screen it quickly and move on to the next. Even if you have to spend a few hundred dollars, send your sample to a specialized parasite poop lab.
Second, don’t go sifting through your dookie like some of these Youtubers tell you to. Unless you have a gigantic tapeworm or roundworms, you aren’t going to see parasites. They are microscopic. Some worms you can see just by sticking a piece of scotch tape on your butthole at night (I swear this is real and is actually a common thing people have to do with kids). Deworming medicine can be bought over the counter.
Third, most gastroenterologists don’t even recognize the microbiome as a real science. The treatment options for anything digestive related is antacids, surgery, or motility meds. Your first line of defense to help yourself while you wait to get real answers with your doctor and your medical support team is food.
You can do a lot with diet. If you try any sort of elimination diet, make sure you are doing it in a nutritionally supportive way. You can get very sick from not having enough of the right vitamins and minerals. Many supplements have ingredients that are irritating to the gut and the same goes for prescription medications too.
I have amassed an ongoing list of favorite health books that I keep updated. Check it out if you’d like to learn more of the ins and outs of gut health, wellness, nutrition, vitamins and minerals, etc.
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