My Story

A Journey Like No Other

Whether you know me personally, haven't seen me in years, or never met me I ask that you take a moment to read and share my story of how I conquered living with a chronic illness for 4 years and regained my health. 

Even if you have seen me regularly or occasionally over the last few years, you probably do not know half of what I have been through, fighting to get help from countless doctors and specialists to get my life back. Before I found treatment, I honestly said, "I would give anything to get my life back and be able to restore function throughout my body so I no longer live in chronic pain everyday. I hope to one day be able to get vitamins and nutrients through adequate nutrition intake and not 25 pills and supplements a day, to be able to eat out and ENJOY a meal (of solid food) without pain, to see friends and go places, and to be able to do things my body can no longer do in my current condition especially dance and yoga." 
I am happy to finally say, I am getting to live my life again =) 

In a Nutshell

I suffered from an undiagnosed condition for over 4 years called: I lived with an intestinal parasite in my body for two and half years that basically destroyed the function of my intestines and my body’s ability to function.

My condition began over 4 years ago with chronic GI symptoms that progressed over time leaving me in constant pain. My body was not digesting solid foods and I was 25 lbs underweight, extremely fatigued on a daily basis, and had to give up so much of what I used to be able to do. All forms of physical activity became extremely draining and fatiguing. All food I ate had to blended or pureed, leaving it in the easiest form for my body to break down. I lived off of soup, protein powder, applesauce and hot tea. I spent countless hours cooking and preparing all my own food. I cut out gluten, dairy and sugar and tried just about every diet out there which made no improvement. 

I saw over 8 gastro specialists in South Jersey and Philadelphia, went through countless procedures and tried ample medications that gave me more side effects than benefits, all of which left me undiagnosed and with no treatment. In addition, I saw integrative and alternative doctors, a chiropractor, an endocrinologist, a biofeedback & neurofeedback specialist and multiple nutritionists. Seeing doctor after doctor over these years, I spent ample time fighting with them to convince them I was not purging and was not "putting myself in this state," begging them for help or treatment. They’ve called it IBS, gastritis, colonic inertia, or chronic idiopathic constipation (which I love, because it sounds like they are calling it “idiotic constipation” because they find nothing wrong on all the tests!) but no GI doctor believed that parasites could be causing all my problems. As a result, my intestines were not functioning, my body was extremely frail and deteriorated causing deficiency in many other areas and resulting in chronic pain. 

It has been a battle, to say the least, to try to get doctor's to understand what I was going through, but I did not give up. I was more than proactive about seeking treatment and finding an answer. Just because one doctor would not listen to me and "they knew better" did not make me throw in the white towel.  There were  countless times I felt hopeless, and listened to doctors tell me, "it's all in your head there is nothing physically wrong with you." But I somehow found the strength to keep fighting. I was beyond determined to one day restore my body's ability to function and not live in chronic pain. I am happy to say I have FINALLY reached that goal. I invite you to read my full story below and hope that you are able to find inspiration and encouragement to persevere through the struggles you encounter in your own life, whether it be from illness, disease, chronic pain or everyday stresses and difficulties life throws at you. 

It started back in 2011, I was in my last semester of college and just coming off of a show week, which if you are familiar with any involvement in performing arts: a show week means a week of no sleep and being in the theatre until 11 p.m. or later, followed by four days of performances.  I came down with an awful case of bronchitis a few days later and was put on azythromycin antibiotic (z-pack). When I say this antibiotic tore me to pieces, it felt like my stomach was being torn to shreds. I was nauseas, couldn’t keep anything in my body, and had just about every other side effect possible for the 10 days I was on this medication. The answer I got from my primary doctor was “antibiotics can do that, you just have to keep taking it and finish it.” I had taken this antibiotic twice before and did not have these violent side effects. I started having pain up high in between my ribs, at the base of my sternum every time I ate. Solid food was hurting, it pretty much felt like it was getting stuck, so I began the soup, tea, and toast diet. I returned to my primary doctor explaining my symptoms and was told I had gastritis -- the entire lining of my stomach was inflamed. Beautiful. Not exactly what I wanted to hear. The treatment was to go on all liquids for a few days to ease the inflammation and start taking Prilosec. At the end of the “all liquids week” I had what felt like a stomach virus, for 14 straight hours my stomach was in complete spasms, leaving me hugging the toilet and not even keeping water down. When I say I don’t know how women go through childbirth, I feel like that day I really did! Again, I returned to my primary doctor who told me the first antibiotic caused another infection all through my GI tract because antibiotics "can just do that!" He put me on another antibiotic - Sulfamethoxide. After that antibiotic was done, the pain up high between my ribs returned. My primary doctor at this point just said it was time to see a gastroenterologist.

I saw gastro #1 in April 2011. The first words out of his mouth were “Celiac Disease.” He tested me left, right, up and down for celiac over the next 4 months, leaving me waiting 4-6 weeks in between appointments for test results. Everything was negative for celiac: bloodtests, endoscopy, and genetic blood tests - yes, all negative. The genetic bloodtest showed I have the DQ8, putting me in the realm of a 1 out of 89 chance of developing celiac over the course of my life -- but not enough to diagnose it! Putting it into perspective, I probably have a 1 in 89 chance of getting struck by lighting or run over by a car too! For being told this genetic blood test was "just a blood test" the bill I received for it was astronomical. I learned from this point forward to find out ahead of time what these tests actually cost. And NEVER NEVER NEVER take the answer, "it's covered" until you confirm left and right with your insurance company what your coverage is!

I tried a lactose free diet and it made no difference. I then started a gluten free diet, that made no difference. When all test results came back negative for celiac Gastro #1 wanted to repeat the endoscopy and everything else he tested for already because there could have been a “false negative.” At this point, I had the expectation that going through these tests would produce an answer. The thought of having celiac and not being able to eat foods containing gluten was really hard to cope with, but once I ate gluten free and had no difference I knew it wasn't celiac disease. I was only eating very soft bland foods: mashed potatoes, rice, soups, etc. and still having pain when I ate and after I ate. I took Nexium for a month, which again, was not covered by my insurance and cost a fortune! It helped get me get through my last semester of college, but I knew it was time to move on to gastro #2 for another opinion. 

July of 2011, I started seeing gastro #2. He suggested it could be my gallbladder. The ultrasound was negative for gallstones and it would take weeks to wait for a Hida Scan. A hida scan is a nuclear medicine study to determine if the gallbladder is functioning. I didn’t make it two weeks. At that point it had been 5 months since all this started and it was to the point the pain was keeping me from being able to eat and waking me up in the middle of the night. I got gastro #2 to order the Hida scan STAT. I got a phone call that night that my gallbladder wasn’t functioning.  I didn't have gallstones, it was diseased. The options he gave me were to call a surgeon in the morning and see if I could get an appointment with them over the next few weeks or try a low fat diet (been there done that with the low fat diet). I came up with a third option, and it was go the ER -- this had gone on long enough! 

After waiting 4 hours in the ER, while every bump, mosquito bite and bruised finger were seen before me, the doctors wanted to just send me home. It was thanks to a nurse who saw how dehydrated I was, who persuaded them to keep me.  The following day I was in surgery having my gallbladder out.

They were able to do my gallbladder surgery lapriscopically. They kept me overnight then sent me on my way the next day saying “don’t lift anything heavy, eat low fat for a little while.” It took about two weeks before I felt like I was recovered. After the surgery I was left with chronic constipation. When my symptoms flared bad in October of 2011, gastro #2 ordered a small bowel series and bloodwork. After 4 hours of choking down two and a half bottles -- not cups - 12 oz bottles of barium -- the results all came back normal and he told me, “constipation is the opposite of what people have after having their gallbladder removed, most people have diarrhea. It's just IBS there is nothing physically wrong with you." I saw him until the beginning of 2012 and all he offered was, “it's just IBS, take miralax.” I tried a new medicine called Amitiza but that just made me nauseas and did not improve my symptoms. 

I continued to follow a low fat diet. I gave up the gluten free diet once it seemed like the gallbladder was the problem and celiac was ruled out. I started cutting out processed foods and choosing more natural organic foods. Trust me, it was not easy at first but I stuck with it because I wanted to get well and was willing to try anything.

At this point in 2012, I was still working, doing yoga, teaching dance, still attending social or family activities but I was beginning to feel that my normal work load was becoming too much, as my symptoms continued. I did get to perform in the Philly Fringe and Live Arts festival, dancing a 30 minute routine out front of the Art Museum!! 

I had my wisdom teeth out in 2012...three impacted teeth were removed and that was another week of a liquid diet. I was determined to not drop more weight, drinking protein shakes and milkshakes until it healed up and I could chew again! 

I started my yoga teacher training program in the fall of 2012. At this point, I was still eating solid foods, trying one medication after another but not getting any relief. The slew of medication I've been on and tried is sickening. I sought out seeing another gastro doctor at this point.

I saw gastro #3 the spring/summer of 2012 -- a female this time. She told me the only thing that could be causing chronic constipation and the symptoms I had was Chron's Disease and I should consider a colonoscopy. She also threw in there, "it could also be cancer and you wouldn't know it unless you have a colonoscopy." Scaring the living day lights out of me!!!! Yet, she offered no other suggestions other than "it's just IBS."

In December 2012 my symptoms continued to progress and became more frequent. I was dropping more weight (now down to 89 lbs.) I went to gastro #4 at Jefferson in Philadelphia. After a gastric emptying scan that was normal and a colonoscopy that had inconclusive results, only showing mild unspecified inflammation, I felt like I hit rock bottom. Gastro #4 didn't really have an answer or explanation after the colonoscopy results so she reverted to "maybe you really do have celiac because you are still losing weight." 

Two weeks after having the colonoscopy I had my falling out with Jefferson. I dropped 5 more lbs. from not eating solid food for a week after the colonoscopy. I can’t tell you the degree of pain, swelling and inflammation I suffered for a week after the procedure. It takes a lot for me to take pain medicine but I remember trying to stand up after I tried to eat a bite of toast and I wound up curled up on the floor in a ball...yes, then I gave in and then took the pain medicine. 

Not being able to find a physical diagnosis and seeing that I continued to drop weight, the gastro from Jefferson's solution was to resort to, "well maybe they missed something the first time, maybe it is celiac disease." She insisted I needed to have an endoscopy, colonoscopy and small bowel series repeated STAT. It was only TWO WEEKS after I had the colonoscopy. I JUST went through the colonoscopy and knew my body was extremely weak. I was on antibiotics for a sinus infection and I knew my body was in no shape to go through another invasive procedure AGAIN with anesthesia that soon. I received a call from Jefferson the next morning asking where they should transfer my records to because they did not want to be held liable for my "refusing medical treatment." That was the end of my time with Jefferson.

I can't tell you the hours of sleep I lost from the anxiety that the pressure they put on me caused, telling me to have these procedures done immediately-- aside from the thought of what it would cost to repeat all 3 of those procedures STAT.  I stood my ground though, not having any upper abdomen pain I saw no reason to repeat the endoscopy and my body didn't feel like it was even recovered from the colonoscopy that I JUST had! I was still extremely weak from it. 

I started having chronic sinus infections. I was getting colds/viruses that turned into sinus infections or respiratory infections because my body and immune system were extremely weak and compromised that they couldn't fight them off. It sometimes took more than one course of antibiotics to kill the infection, as they became recurring infections. I started to realize at this point that I couldn't do as much as my body could handle before. One day while trying to work while taking antibiotics for a sinus infection, I had a student stop me in the hallway and say, "you really don't look so well." I started to see at this point that my body was very weak and my immune system was not able to fight off these infections while I trying to still work and do everything I normally do. 

I again felt like I didn't know where to turn next. I saw an endocrinologist in the spring of 2013, which I initiated MYSELF. I started to consider that it could be something outside the GI tract at this point. I wanted my T3, T4 and reverse T3 to be tested. My thyroid level was around 1.0 in 2011 before all the chronic GI problems began when I was at my normal weight of 105-110 lbs. My TSH then dropped to 0.5 in 2012 after I lost more weight. From that point on, it was always borderline of underactive. If they considered 0.4 to 4.5 normal, I came in at 0.5 and the doctors all said "you're in normal range," even though I was hugging that border of underactive. The endocrinologist ran a full endocrine panel to test my thyroid, pituitary gland, adrenals and ran a cortisol stimulating test. All came back normal. He wasn't concerned that my body had stopped menstruating on it's own, he said it was due to being underweight and if I put the weight back on it would likely resume on it's own again. 

The panel of bloodwork it took to run the thyroid and endocrine panel left me bruised and battered after 3 sticks of trying to draw 10 vials of blood! I told them there was no way they would get that much out of me....I would be on the floor long before that! They wound up getting around 4 vials from me, and this was the aftermath -- a bruise the side of Texas that lasted 2 weeks! But...they were able to run the full bloodwork with only 4 vials...not 10!

I reached the point of beyond frustration with these doctors. It didn't seem to matter how much pain I was in when I saw any of these doctors. I would go in pleading my situation telling them how much pain I was in, how long this has been going on, etc. and they would make me wait an hour or more to be seen, spend 10 MAYBE 15 minutes with me, tell me  all my tests results came back normal and to keep trying medicines I already tried or play with a combination of Miralax, stool softener, and fiber then and come back and see them in 6 months! Then off they would go the next patient. Sadly, this is how modern western medicine operates today. I worked with someone who had Chron's Disease and she was in much better condition than I was because she was getting treatment. I watched her come into work each day with double the energy I had, she was eating, having a social life and in much better shape than I was! It didn’t seem fair. Putting myself through all these procedures and getting no answers and no treatment left me feeling hopeless.

I started going to community acupuncture in Philly in July of 2013 for the chronic sinus infections. At my first appointment, I gave my history and they explained how acupuncture can be beneficial for all the GI problems too. At first I was thinking "needles in my stomach?? there's already enough pain." But you honestly do not feel the needles. It's not like needles you get at a doctor, they don't go deep through layers of your skin. I soon found out that acupuncture was hands down pain management for me. I would leave the sessions saying, "this is seriously the best thing I can be doing for my body." I went to acupuncture regularly South Philly Community Acupuncture. I highly recommend acupuncture, not just for chronic pain but for many many other conditions.

The acupuncturists were seriously more helpful than any doctor or nutritionist I had seen when it came to what foods to eat to help my body heal. They gave me insight on how to make bone broths and which foods were most nutrient dense and easiest to digest. I am beyond thankful that I continue to have them as part of my healing process.   

      

  

I saw gastro #5 in June of 2013, after waiting over an hour to be seen he told me colonic inertia was lacking. He explained a test called a sitzmiser study which involves swallowing several capsules then getting a daily x-ray taken consecutively for a week to show if they are moving through the intestines at the proper rate. I told him I was sure they weren't. He said if the study showed the transit is delayed then the answer is to start cutting those sections of the intestines out. This scared me to death! He said the answer would first to be to try a motility drug such as Linzess....that sounded better! So instead of putting me through the test he let me just try the Linzess medication.

At this point I was in a cycle of my symptoms flaring up, causing constant pain, not getting enough nutrition in me, feeling weak and chronically fatigued. The more food I tried to put in me the more pain I had. My weight was down to about 85 lbs. at this point.

After my falling out with Jefferson in early 2013, I felt like I didn't know where to turn next. I started to consider if it could be an autoimmune disease. I began to look into integrative and alternative doctors thanks to the group of yoga teachers I trained with. What I found is that alternative doctors cost and arm and a leg because most do not take insurance and it takes months of waiting to get an appointment with them. In July of 2013, I found an Integrative doctor, who is now my PCP. He ran alternative tests to look at food sensitivities, micronutrients, the autonomic nervous system, neurotransmitters, and a comprehensive stool analysis. Integrative Medicine is a middle ground between regular western medicine and holistic medicine. He is an M.D. but has a more alternative approach and uses more natural supplements than steroids, antibiotics and traditional medications. 

It took at least a month to get straight answers from the insurance company on which alternative tests would be covered. Once we finally knew what it would cost, (which was not covered nicely by the insurance!) I got the tests done one at a time then had to wait another month for the results.

In October 2013, I went back to my PCP for a follow-up to get the results and hear the words, "you have an intestinal parasite." Blastocystis Hominis. After two and half years of being told by so many doctors that there was no diagnosis, there was nothing physically wrong, it was all in my head....I found out there was a parasite living inside me. This thing having lived inside of me all this time, literally eating me alive, made sense as a diagnosis. I wasn't gaining any weight because it was feasting off of all the food I put in me. In addition, the levels of candida (overgrowth of yeast) and dysbiosis (a type of bad bacteria that should not be in the body) were off the charts. With all the gastro doctors I saw, I asked if there could be a bacterial or yeast infection and I got answers such as: "those are complete bogus," "that's not a real thing," "if you had an infection you'd have a fever and diarrhea." Got news for you -- I lived two and half years with NO infection NO fever and had chronic constipation, not diarrhea. He said there is no way to tell how or when I got the parasite for sure, it likely came from food or something I ate at college back when all these symptoms began (the day I could not keep water down at the beginning of all this). I didn't travel to a foreign country and I don't EVER eat sushi or raw food so I already wasn't the "typical case."

The course of treatment was a ridiculously strong antibiotic called Paromymicin which was basically out of existence. It was not easy to find a pharmacy that carried or could even order the medication. I was doing back flips from one pharmacy to another and finally got it. I had to take 7 pills of it a day for 10 days. I thought I was already fatigued, then I started this medicine to kill all the bad stuff swarming in my body. When I say I felt like it wiped the life out me, taking this course of medicine to kill it literally felt like someone knocked me out. 

This is what I looked like at the time....here is your fair warning that it is not pretty!! It's likely to give someone nightmares!

              

The treatment for the parasite went well beyond the antibiotic. I started a supplement called Candibactin to kill the Candida and yeast overgrowth which I took for 3-4 months. Then I started a supplement called Dysbiocide to treat the overgrowth of dysbiosis bacteria. These again were not easy courses of medicine. They caused a rough period of "die off" but it was killing all the bad stuff that was in my body. I took about a month off from working while I was on the antibiotic and starting the supplements to give my body time to rest. I then returned to working. I felt chronically fatigued still but needed to work to afford the medical bills and medications.

At this point, I cut out dairy and sugar almost completely (still gluten free). Dairy and sugar were feeding the yeast and bacteria so reducing them significantly helped stop the production of them in my intestines. It felt like my body did not know how to handle any food I put in it. My gut felt like it was rotting inside me. 

Through my yoga training I started a deep meditation practice which I continued. At this point I was going to weekly group meditation classes and practicing on my own as well. Meditation and yoga truly helped keep me stay grounded through the course of everything I went through. It became more difficult over time to be able to let go and reach a state of relaxation because the pain was interfering. 

I saw gastro #6 at the end of 2013. She said that since the parasite was treated already, it had no influence on my symptoms because again....people that have parasites have diarrhea not constipation others can have parasites and never have symptoms. She basically told me to go back to taking Linzess once I finish the supplements for the yeast and dysbiosis and then like all the others...come back in 6 months. I realized that all of these gastro doctors had the same approach and answer -- they either did not take the time to consider why my GI system was not functioning properly and how to repair it, OR they wanted to repeat tests I already had because maybe they "missed" something the first time or maybe there was a "false negative." Western doctors are trained to look for and diagnose physical disease, when it comes to functional medicine they are clueless. The Integrative doctor, my PCP who found the parasite, was pretty certain the parasite was the reason for my GI system function being disrupted but he was not a GI doctor. I was thankful that I found him when I did and that he stuck with me to see me on a monthly basis; however, he couldn't really offer a solution for the continued functional GI issues and pain I was experiencing. 

In January of 2014, I had sinus surgery to help improve the chronic sinus infections. I definitely questioned whether or not it was a good idea. I knew my body was not well. I weighed 85 lbs at this point and still felt extremely weak and fatigued. I had a submucous resection of turbinators.  It was a structural problem that needed to be corrected. The surgery went well, and I was extremely surprised at the fact that I could breathe through my nose immediately upon waking up from the surgery! The surgery really took a lot out of me. I was extremely tired daily and again took about 2 months off work to recover. Thankfully this was the winter we had one snow day after another, so I took it advantage of hibernating inside to rest as much as I could =) 

The abdominal pain was constant. I was not able to digest dairy, sugar and gluten and foods I previously ate with no problem. I realized, on my own without any doctor telling me, that my body wasn't able to digest these because while the parasite was in my body it was absorbing and feeding off of these foods and my body had stopped doing the work of breaking down those foods it used to. So now that I identified why it stopped functioning like it used to, HOW DO I FIX IT!?!?

It felt like when I put food in my body, my whole gut was rotting inside of me. My body temperature would jump constantly, especially after eating and I would feel shaky. It felt like my whole body was freaking out and it did not know what to do with the food I was putting in me. The best way I can describe it is that feeling after you've had the stomach virus where it feels like your whole gut has been ripped to pieces inside you. When you try to even think about taking a bite of food or sip of liquid it's enough to make you want to hurl. That was my life.

Over the winter of 2014, still recovering from the sinus surgery, I saw a pelvic floor specialist. Again, I was trying to consider if it was something outside the GI system. He determined that I did not have pelvic floor dyssynergia and I still had control of my pelvic floor muscles. I again didn't fit into the "norm" of that diagnosis either. Pelvic floor dyssynergia is common in women who have had children and the elderly who are sedentary. He said my problem is higher up along the GI tract and suggested seeing a colorectal surgeon who knows the physiology of the GI tract. So why not...what did I have to lose at that point? ....other than my time, and the cost of the visit! I saw the colorectal surgeon he recommended at Virtua in February 2014. He looked over all the tests I had done up to this point and said the problem is higher up along the left side in my large intestine and suggested I see a GI motility specialist. He recommended the GI department at Temple in Philly. So both of those specialists gave me the, "I'm not the right person for your problem" answer but it at least ruled out more possibilities.

At this point I had to start giving up much more of what I was doing on a regular basis. I gave up teaching yoga, reduced teaching dance and reduced the number of days I worked each week. I could tell my body was not able to do much of what I used to be able to. Any form of physical activity would leave me feeling beyond fatigued. It was SO HARD for me to give up these things I loved. 

In March 2014, I saw gastro #7 at Temple in Philly. He was head of the GI department and a motility specialist, someone who specializes in the movement and transit through the GI tract. Again, waiting over an hour to be seen and then having him sit with his back to me typing into a computer, he spent about 15 minutes with me. He ordered a 4-day gastric emptying scan which is a nuclear medicine study to follow a radioactive isotope through the path of the whole GI tract, not just the stomach. In addition, he ordered a lactulose breath test for bacteria overgrowth of the small intestine, routine bloodwork, a manometry study for pelvic floor dyssenergia and an abdominal x-ray. The lactulose test was negative and the manometry study showed I did not have pelvic floor dyssenergia. From the x-ray and gastric emptying studies they could see transit was delayed and my intestines were impacted with stool. They could see that the food gets stuck and sits in the same spot from day to day, which it is NOT supposed to do! When I saw him for a follow-up, he accused me of an eating disorder and purging and told me to try a medication caused misoprostal. This medication is not typically used as a laxative or to treat constipation, and I soon learned why. It is used to induce labor and cause contractions, and it did just that in my intestines. It left me in spasms and moved nothing out of me. I took it about 10 days and was losing my mind so that was enough of that! 

In May 2014, we retested for the parasite and it was gone. The levels of yeast and bacteria had leveled back out, but at this point the pain was still constant. I still felt like I was stuck in the cycle of the abdominal pain keeping me from eating, not getting enough food in me, feeling weak, lightheaded and fatigued. I knew with the levels back to normal and the parasite gone, it was a functional issue. The problem was, no one knew how to treat a functional problem.

I saw the Temple gastro a month later and he again brutally accused me of an eating disorder and purging then said, "well the cause of why your intestines are not functioning is unknown and since it's been three years and you've tried all these medicines out there you should go see a colorectal surgeon and have your colon removed. This will leave you hooked up to a bag the rest of your life." I was scared to death! I knew this was NOT the answer. My colonoscopy was completely clear. Why do you want to remove my intestines just because you don't know what the cause is?!?! My PCP called me when he got this report and said do NOT just jump to having your colon removed, it is an extremely invasive procedure and not the solution. But, at the same time I felt like I needed to consider it because no one was offering any other treatment or solution. I was being left to live in chronic pain, with no outlook of any improvement. 

I saw an ayurvedic nutritionist in June 2014, recommended by my PCP. After explaining my situation she advised me to cut out sugar, dairy and solid foods - especially carbs: breads, cereals, crackers, waffles, pasta, salads and raw foods (salads). She advised me to continue gluten free and starting taking protein powder and making my own protein shakes. All vegetables should be soft and well cooked, and I should blend or puree foods into a liquid consistency as much as possible. I honestly wanted to cry when I was told all this!! Her philosophy was to rest the GI system and take as much work off of it as possible to let the body heal itself. She recognized that eating solid foods was impacting my intestines. Her approach made sense to me, and my PCP agreed so I transitioned into these changes. Breakfast went from eating cereal, waffles, or a piece of raisin bread to handful a spinach, blueberries and protein powder...which was not cutting it lol. I felt like I was eating NOTHING. It did not fill me and I wanted to just eat something solid! I dropped another 5 lbs. Was it easy?  Not in the least! But I stuck with it because if there was an inkling of hope that it would help my body heal, I was willing to do it. I stayed on this diet up until August 2015.

I found a biofeedback and neurofeedback clinic in July 2014 and continued to go to them 3 times a week through December 2014. The doctor at this practice was from India and had a much more natural approach to healing. He made many of his own supplements and his treatment was based off of many principles from India. He previously traveled to India and treated people who are severely malnourished from chronic diseases. He gave me hope that my colon could heal itself; however, he had high expectations that I would put 5 lbs on over a week which I told him wasn't happening. I didn't gain a pound at all over those 6 months but I maintained my weight. I was now around 75-77 lbs. Biofeedback taught the approach of positive affirmations, meditation and relaxation (which I was already deeply practicing) and telling yourself to believe you will heal and recover. He stressed the philosophy of "resting the body," which was hard for me to do in the current circumstances. I was still trying to work as much as I could to pay all the medical bills. I could see the potential biofeedback had, and the benefits it provided; however, I knew that my body wasn't in a state where retraining and reconditioning could really happen. No matter how much I told myself that my body needed food, and it is ok to eat, pain always followed eating and most of the times preceded it as well. My body got used to associating food with pain because that was pattern it was stuck in. I knew that until the pattern was corrected and the physical malfunction was corrected trying to retrain and recondition my body was of no benefit. Forcing myself to eat when I was already in so much pain was so hard. I truly saw how people can easily become afraid to eat due to suffering. I recognized this pattern happening in myself but I wanted to be able to eat solid food more than anything. I wanted to eat out at restaurants and do normal things, not plan every single meal and eat all blended and pureed food. I cannot tell you how many days I CRAVED sweets and just wanted to be able to eat ice cream or a cookie! At this point my BMI was between 14 and 15. On the BMI scale, this put me in the range of severe eating disorder.

The biofeedback doctor suggested I apply for disability because I shouldn't be working, I should be in bed resting everyday. That of course is something doctors don't understand is feasible!! You don't make money to pay for all these medications, medical bills, and organic foods laying in bed! As he suggested, I started the process to apply for disability but expected I would not be approved as I had no diagnosis. 

Through the Fall of 2014 I was going to physical therapy twice a week for tendonitis and joint pain and biofeedback three times a week, on top of trying to work as many days as I could to afford my medication and all the co-pays and medical bills. My body literally felt like I was running on empty.  At this point, I felt like I was being pulled 3 different directions when it came to nutrition. The nutritionist advised me to cut carbs, the biofeedback doctor told me to eat diary and that there was no limit to the amount of protein powder so take it 4 to 5 times a day, and my PCP recognized that cutting out carbs was contributing to not putting on any weight. I didn't know who to listen to, but I learned quickly that I was the only one who knew what my body could and could not tolerate. Listening to myself and my body was the best thing I could do for myself.  

I love when people would say to me "why don't they just give you pain medicine so you can eat" 1. pain medicine will only upset my stomach MORE 2. pain medicine won't FIX the problem!! It will stop me from feeling pain temporarily but my intestines aren't processing food. Pain medicine isn't going to make my GI system process food and function like it should! PLUS, I couldn't picture myself trying to drive and go to work while on narcotic pain medicines!

I reached the point by 2014 where I was ready to pick my life up and move somewhere else if it meant getting the medical care I needed. Having seen about half a dozen gastro doctors in New Jersey and Philly, including two of the most renowned medical institutions in the city, and having no doctor offer treatment or a diagnosis I needed to go wherever I could get the right treatment. The problem was finding someone who would have an answer or option for treatment other than "let's just cut out your colon." I considered Mayo Clinic, even if it meant having to travel half way across the country, I was ready to do it. The waiting list for Mayo Clinic was 3-4 years. I was just being left in this condition, living in chronic pain with no prospect of treatment. I really did start to consider surgery for a colectomy. I feared it more than anything that removing my intestines, especially in the frail, weak condition that my body was in, would not be beneficial, especially since the cause wasn't known. If it was a form of an autoimmune disease with the body attacking itself, removing my colon likely wouldn't solve the problem. 

I wasn't going to just give in though. As hard as it was to get up every day and carry on, I knew my body needed nourishment and thought that putting weight back on might improve the function of some things? I started looking into IV nutrition therapy (TPN) or the possibility of a feeding tube. My PCP was in favor of this; however, he said it has to be done through a gastro doctor. He referred me to the gastro he typically refers his patients to and said he suspected this gastro would have a similar approach as all the other gastro doctors I had been to, but it was worth exploring. 

I saw gastro #8 in November 2014. Having sent in all of my records ahead of time, I arrived for my appointment and to no surprise he had not looked at a single page. So I sat my phone book of records in front of him and he said, "you're the toughest case I've seen, I don't really know what to say." Not able to pin point a physical diagnosis, he decided to diagnose it as anorexia and AGAIN..accuse me of an eating disorder and purging. He ordered bloodwork to check my protein level and prealbumin (an indication of malnutrition). When I saw him for a follow-up the next month he said, "your protein level and prealbumin are normal, I'm shocked but there is no need for TPN." All of these doctors look at NUMBERS, forget the fact that I was now 25 lbs. underweight and ready to collapse on a daily basis, if the numbers fall in "normal" range you must be fine. He was puzzled as to what to do, but he was still badgering me about an eating disorder, yet offering no solution or treatment. Ironically, he was a big fan of the gastro I saw at Temple as he had studied under him (seriously what are the chances!!) He said the gastro from Temple was "one of the best there is on the east coast." I responded by saying, "well for the best on the east coast he gave up damn easily and told me to just go have my colon removed!" Gastro #8 agreed that having my colon removed was not the solution, but didn't know what the solution was.  He made sure to point out that he still suspected I was purging and wanted to have an appointment with my mother to understand "what is really going on." When I asked what treatment he would recommend his response was, "you're putting yourself in this situation by not eating."  So I said fine, I will bring my Mom in and she will tell you exactly what I'm telling you! You aren't going get a different story from her!!

I had the appointment with gastro #8 and my Mom in January 2015 right after New Year's. Upon introducing himself he told my Mom he wanted her here because he is soooo concerned about me. My Mom threw right back at him, "yes, so am I and so is she! That is why she has seen so many doctors seeking help!" My Mom pointed out to him that girls with eating disorders are NOT going from doctor to doctor over three years seeking help and treatment. After hearing it all from my Mom, I think he got past the eating disorder acquisitions and suggested going to John Hopkin's Hospital in Baltimore. 

I contacted Hopkins and found it was a 6 month waiting period for an appointment and...it gets better...my appointment was 4 days before I turned 26 and would lose my health insurance! The winter and spring were filled with trying to apply for an extension on my current health insurance, looking for individual health insurance plans, trying to find coverage to see a nutritionist and hours upon hours of headaches! I cannot even begin to tell you the hours and number of phone calls it took to the insurance company to get a straight answer on coverage. I talked to 4 different people and was told 4 completely different answers. I saw a nutritionist at Virtua in March 2015. She attempted to measure my body fat content and when I stepped on the scale it came up as 0. She said in 34 years as a nutritionist she has never seen someone with 0% body fat.

I recognized and accepted that from just looking at my body I looked like someone who had an eating disorder. My body was frail and visibly deteriorated. You could see the outline of almost every bone in my body.

Fighting with all of these doctors trying to convince them I was not purging, not starving myself and not trying to change my weight on my own, I felt like I was fighting for my life.I was. It was beyond exhausting going to all these doctors, pleading for help telling my story and being told there's no physical disease, it's just IBS, it's all in your head, or we don't know what to tell you. Yet, I continued to seek help. I knew that my body was in the state of someone who had an eating disorder....malnourished, weak, deteriorated but I refused to sit back and take the "we don't know what to tell you" answer.

I saw another alternative/integrative doctor in February 2015. I was attracted to this practice because they offered IV therapies without it having to be ordered through a gastro doctor. It cost a fortune just to see him for the first office visit because they, of course, did not take insurance! This practice had no understanding whatsoever of financial situation. They expected I could get all these tests done at the drop of a hat, some of which I had done previously, that would've cost well over a thousand dollars. The alternative doctor reviewed all my records and said there has been a lot of damage done to my GI system and it will take a long time to repair. He ordered of slew of tests to be done and recommended another swarm of natural supplements to start which also cost a fortune. I was not feeling confident that this was what I needed to do, I felt like I had taken this alternative approach twice already with the alternative tests and supplements. Although this doctor claimed it was all necessary, I went back to my PCP and he agreed majority of it was unnecessary since I had already had most of those tests done. He recommended three different panels of bloodwork to be done and suggested I start the vitamin IV therapies that he offers, which were only vitamin IV therapies but it was all I could get at this point!

The three panels of bloodwork turned into four, because the one test got contaminated and the lab decided not to inform the doctor or me! After calling and asking for results and being told it can take 3-4 weeks and it hadn't been that long yet, at the 4 week mark I found out it was contaminated and I needed to get it re-drawn then wait ANOTHER month for the results. I really wanted to rip someone's head off!!!

I started IV vitamin infusions in April 2015. Since they wouldn't give me IV nutrition therapy, it was the closest thing I could do. Again, the insurance didn't cover it so I was paying hundreds out of pocket per infusion. The first infusion knocked me on my ass. I felt like I could barely stand on my own two feet after it. I was nauseas and beyond woozy. It was discouraging, as I  hoped that these would make me feel better - less fatigued and give me more energy. My PCP explained that with the first few infusions those symptoms can be normal as it is pumping a lot of vitamins and minerals in your body. The symptoms weren't as bad with the second infusion, and then by the third my body was adjusting better. I had them run the infusions at a very very slow rate, taking around 4 hours for each infusion. My whole arm would be sore during each infusion. I think mostly because of how underweight and frail I was and since they had to use a bigger needle.  There wasn't a whole lot of difference in how I felt after doing the infusions for several weeks. It didn't decrease the pain, but the people I was around told me I looked better. I started to get some color back to my face and I didn't look as depleted as I had been....so they were doing something good!

At this point, June 2015 my body is digesting next to nothing. I cut out dairy and gluten and could only consume small amounts of low sugar. I lived off of soup, tea, protein powder, applesauce, blended or pureed rice and vegetables and homemade fruit and protein shakes. I had been on this diet for a year and have maintained my weight but was not gaining weight. I knew the foods that I needed to gain weight where the high calorie foods my body was not digesting: meats, ben & Jerry's. dairy, etc. My body was in an extreme state of distress. I was deficient in Vitamin D, potassium, CoQ10, and the list goes on and on of what body wasn't getting from solid food. The pain was constant, my GI system wa not functioning normally and it is affected many other areas of my body: causing chronic fatigue, joint pain, lack of sleep and many other symptoms. I had no energy to do anything.

It was a daily unknown of how I would feel, some days are worse than other leaving me feeling like I could barely stand up and in such pain is hard to do anything. Other days when the pain wasn't as extreme, I felt like I could get a little more nutrition in me. But, I continued to do all I could do to help my body heal, in hopes that I would one day recover from all my body has been through. 

.

"It was with the continued support and encouragement from those closest to me that I have been able to persevere through I have endured."

I held out for my appointment at Johns Hopkins on June 24th. The day finally came and I reminded myself to walk in with my chin up. It was hard, because by this point I was on a roll of every appointment leading me nowhere with no solution or answer. But I had mentally prepared myself that if they told me I needed my colon removed, Hopkins is where I would have it done. I wasn't going to let just any surgeon do it, it needed to be the best of the best. My Mom went with me and the appointment lasted 4 hours. The biggest difference with Hopkins was that I met with a TEAM of doctors. First a nurse practitioner and a nutritionist, then a psychiatrist with two resident students, and last but not least, 2 gastro doctors. At first when I heard them say, "you're meeting with a nutritionist and psychiatrist" I thought to myself, they just think I have an eating disorder. But I was fortunate to find they did not jump conclusions. They had me recite my whole history in my own words, which frustrated me at first. I questioned, why I needed to go through everything I already gave them AND outlined for them in a 12 page summary of all my history!? But my Mom pointed out that it comes across differently when you emphasize it yourself, saying, "that doctor wanted to cut my colon out of me!!!"  So they could tell from my perspective my willingness to get well. The psychiatrist asked me a lot of questions to get a brief rundown of my life: where I went to school, my favorite hobbies, what childhood was like, who my friends were, etc. I gave him a very thorough rundown of my life, work ethic and my scholarly academic achievements. A few minutes into our conversation he said, "you are definitely someone who WANTS to get well. There are people we see who come in and just want to be sick and are content with being sick and never getting well." The reaction on my face said enough. He truly understood I was not doing anything to put myself in the state I wound up in. The psychiatrist explained so much more than any of the GI doctors I previously saw. He said that when your body is so underweight it stops producing the enzymes to break down certain foods, especially dairy, so that is why I used to be able to consume those foods and they now caused pain. He explained that I was stuck in a viscous cycle of being underweight, suffering from chronic GI pain, the pain affecting my nervous system and responses to the brain, not getting adequate sleep, the pain keep me from eating, and it starts over. I was amazed by his knowledge of the GI system in relation to the overall function of the body. Most of all he told me it is not permanent, which was one of my biggest fears.

Last I met with the gastro doctors. That day I met Dr. Dhalla the man who I am happy to call my saving grace. He LISTENED and did not just automatically dismiss everything I said. He most definitely did not have the approach I had seen before in all the other doctors, the "you don't know what you're talking about, I'm the doctor and you're the patient" approach.  He told me that a functional gastrointestinal condition is not as common as all the other GI diseases but that they have seen and treated this before. He agreed with many of the symptoms I explained to him: nausea, chronic pain, fatigue and constipation. I met with the team of doctors collectively at the end of the appointment. Their determination was that my body was highly compromised from the parasite and infections and that even once the parasite was killed, my GI system had not returned to the normal functionality it had before the parasite. They suggested having me admitted for inpatient treatment in either the chronic pain treatment unit or the eating disorder unit. They left the decision up to me. When they asked what questions I had, the first words out of my mouth were, "what are the chances that I will need to have my colon removed?" The psychiatrist's eyes popped out of his sockets and he said, "do not let ANYONE cut you!!" A sigh of relief came over me in that moment. I told him I knew that was not the solution and I stood my ground when the previous GI doctor told me that was the next option. The next words the psychiatrist told me will stick with my for the rest of my life, he said, "I would not sit here and tell you this is something we can treat and help you with if I didn't truly believe and know that we can help you." It still brings tears to my eyes. He told me, "you do not have an eating disorder, you disordered eating resulting from what your body went through. It IS NOT YOUR FAULT that your body got to the condition it is in, but we can help."

My Mom says it felt like we were sitting at a table with Dr. House and his team. Dr. Dhalla turned out to be my Dr. House. 

I wasn't exactly walking on sunshine quite yet after this appointment. I was worried about getting admitted without insurance, what the costs would be, and what would happened, would the treatment work? I wanted to believe with all my might that it would, but nonetheless; there was not a doubt in my mind that this was the place I needed to be. When they said come in-patient, I said "Done! I'm ready, I'm ready to do whatever it takes to get my life back." 

Over the next 2 months I went on a roller coaster of ups and downs, fighting with insurance companies and the admissions department trying to get admitted. Visit my post on: Holding Out For Hopkins. Finally, on August 20th after an exhausting two months, I got the phone call that said, "we have an opening for you come tomorrow." I was flooded with a rush of emotions, "oh my God, I have so much to do! What do I first!?" I then reminded myself I was 95% of the way packed already. Everyone I told pretty much had the same reaction, "yay! wahoo! that's awesome!!!" And finally one person responded and told me not to be afraid, it may be scary, but that I have fought so long and hard for this. Those were the best words of wisdom I got that day. 

I chose to go into the eating disorder unit because the chronic pain unit didn't seem to be the best fit for me. The average age was 75. I knew my problem was more related that of someone with an eating disorder. I was undernourished, frail, weak and struggling to get my body to accept food when it caused such pain. I was physically in the same state as an eating disorder patient, but what got me in that condition was not the same as someone choosing not to eat. I arrived at Hopkins on August 21st and was in for a true shock. Upon arrival, I found out this program is designed to break any and every behavior associated with eating disorders. I was handed a packet of rules that had to be followed or else you would get punished and lose privileges (your phone, electronics, having visitors, etc). I was terrified. I learned that the approach was basically to stuff me with food, specifically all of the foods that my body wasn't digesting at the time. I was so afraid. I had no idea what would happen trying to put a massive amount of food in me when my body was already in such pain and digesting next to nothing. The first two weeks were the hardest, I was in such pain and EXHAUSTED. You were not allowed to be in your room or sleep except between 10 p.m. and 8 a.m. Those were also the only times you could shower, brush your teeth, do your laundry, or change your sheets and be in your room. You were woken up every morning at 5:45 a.m. for bloodwork, vitals, and to be weighed. The rest of the day you had to be in a common area so you be observed and ensure you were not purging. So, it left me no time to rest or sleep which was absolutely detrimental to my condition; maybe not to others, but to me it certainly was. Other patients on the unit in my condition, especially those who were compulsive exercisers were custom to never resting and pushing themselves past what their body could handle. I was the complete opposite. 

My Mom offered to take me home that day, as she was afraid what the outcome of   this approach would be and would it work. She was afraid it would make me feel worse or cause more damage to my GI system, but I made the most important decision of my life that day: to stay. I said, "I want to try this, it is my last hope." It really felt like it was my last hope and I wasn't going to run away from it in fear. I stuck it out and it was the farthest thing from easy, but it saved my life. Visit: Nobody Said it was Easy to read my post about the first week at Hopkins. 

With the help of my "twin" Ashley, who I met my first day there, I fought through: the pain, the strict protocol of the program, the lack of sleep, the obnoxious drama among the patients and before I knew a few weeks had passed and my body started to adjust to the routine. In the beginning, the constipation was agonizing but the doctors reminded me that they would not be putting all this food in my body if it was not safe. I didn't feel much an improvement in the pain for the first month. An Eventful Week I was inpatient for 5 weeks and then transitioned to the out-patient day hospital part of the program. Day hospital patients stayed in a house that Hopkins owns a block away from the hospital. During the day, we would be on the unit, then as you made progress you would start to get meals off, then days off, then make the transition back home a few days then a week at the time. See the post : The Beginning of Day Hospital 
 
I was discharged from Hopkins on October 27th and after 2 months, I was a brand new person.

 I was still very fatigued and still expereincing some pain but it was improving and the intensity of the pain was much less. I came home and it started to feel what it was like to live life again! 
I am happy to say that as of today, I am off all of the medications I was on before going to Hopkins, I am back to a healthy weight, I fit into NORMAL ADULT SIZE CLOTHING, and most of all I CAN EAT AGAIN!!!! I feel like I am walking on sunshine =) 
 Looking back, as difficult as the program was, it saved my life. The re-feeding approach I went through was the best way to get my body healthy and functioning again. Had I been placed on IV feeding or a feeding tube my body would not have relearned how to break down all of the fats, sugar, and all the components of regular food. 
 
Many people ask: so what was the diagnosis? how did you get the parasite?  There really was not a clear, definite diagnosis through most of this. The parasite diagnosis was blastocyctis hominis. My GI diagnosis was gastrointestinal dismotility, the  lack of motility or movement through the GI system. My overall diagnosis was disorder eating, not the same as a tradional eating disorder which involves struggles with body image, but rather ARFID (avoidance restrictive food intake disorder) as a result of a medical condition.