- CASE FILE
In 2012, I had surgery for a rectal prolapse. Shortly after, I began having all kinds of new symptoms throughout my body.
ABOUT THIS CASE FILE
I have been suffering from migraines and endometriosis since my late teens. I had 4 laparoscopies for my endometriosis. First one in 1996 then 2008, 2009 and 2010. I also had many sinus infections and had major sinus surgery back in 1998. In 2011 my rectum came out while I was having a bowel movement. I was rushed to the hospital and the doctor took a look at it and pushed it back in. I tried living with it for almost a year, but it just kept getting worse so in February of 2012 I underwent rectal prolapse surgery. Right after I had a difficult time having a bowel movement. I could only pass tiny to small hard pieces. I told my surgeon and she referred me to the Cleveland Clinic in Weston, Fl. After many tests I was diagnosed with colonic inertia and pelvic floor dysfunction. I had to start biofeedback. Two months after my surgery I woke up and couldn't move my head to the right or left and my right arm, hand and fingers were extremely swollen, throbbing and my fingers were curled. I saw my neurologist and he said what did you do? I told him I had just woken up! He ordered an EMG, Ultrasound and labs, but everything was negative. Then I realized how weak and tired I'd become. Also, my hair and eyelashes were falling out a lot. I was at my OB GYN's office getting and exam and I was on the table and my doctor asked me why my feet were blue? I said I don't know, but I've recently noticed this happening along with my hands and feet becoming ice cold. He asked me if anyone has tested me for Lupus and I said no. I also told him about the loss of my hair and eyelashes and asked him if he'd check my thyroid. Lupus was negative, but my thyroid came back low and referred me to an Endocrinologist. I've always been tiny. My weight would be between 115 to 120. I was 119 when I was diagnosed with hypothyroidism in October of 2012. I started getting mouth sores and saw an Oral Surgeon. He took biopsies which came back questionable. He referred my to a Rheumatologist who ordered a ton of labs, but all came back negative. My doctors just couldn't figure out what was going on. While I was going back and forth to Ft. Lauderdale for biofeedback, I started seeing more specialists at the Cleveland Clinic. I did test positive for Vitamin D deficiency, but all other tests came back negative. Several specialists had asked me if I had gotten any rashes? One of them told me if I do get them take pictures incase they aren't there when I'm at the doctors office. A couple weeks later I woke up with rashes on my feet and legs. Then I started getting them on my arms, hands, back and buttocks. My doctors were so puzzled they referred me to the Mayo Clinic in Rochester, MN. I went to the Mayo Clinic in April of 2013. By then my weight had gone up to 133 without changing anything. I saw an Internist first and then he referred me to many specialists. I had so many tests done and was there for 3 1/2 weeks. While I was there my feet, ankles and legs became extremely swollen. I was in so much pain I could barely walk. Everyone kept telling me what a complex case I had. When all was said and done I left there with little to no answers! They diagnosed me with Venous Insufficiency and was told they too believed I was in the beginning stages of Autoimmune Diseases. I was so disappointed! I think I had seen close to 30 doctors and little to no answers. I got home and followed up with my doctors locally and at the Cleveland Clinic. Everyone had gotten the records from Mayo and one of the specialists at the Cleveland Clinic wanted to redo the test for Venous Insufficiency and told me I didn't have it? I was getting so frustrated and my symptoms were getting worse. I started having these attacks normally while I was out running errands. I would be ok and then out of nowhere it was like I got hit by a truck. I became extremely weak, short of breath, hoarse voice, my entire body felt brushed to the touch and my body mentally and physically just shut down. It would scare the heck out of me because I didn't know what was going on! Also, I began to notice my eyes were extremely dry. Even burning. I have worn glasses and contacts since I was in middle school so I went to see my eye doctor. I told her everything that had been going on so she started running a bunch of tests. Eventually I was diagnosed with Sjogren's secondary. I had to see a Retina Specialist and he ordered a bunch of labs. I got a call a few days later and my double strand dna came back elevated and they said I had Lupus. I thought finally a diagnosis. This was the end of 2013. They told me I needed to follow up with my Rheumatologist. When I saw my Rheumatologist he said just because my double strand DNA was elevated doesn't mean a definitive Lupus diagnose. I did tell him my symptoms were getting worse and I was having these attacks that were scarring me to death. He then told me there is an 11 criteria which I haven't ment, but with the test results and my symptoms he can start treating me. He started me on 200mg of Plaquenil. He said he didn't know if it was going to work and that it can take up to 2 to 3 months for the full effect. I told him at this point I'll try almost anything! Three weeks later I was out running errands. I remember walking to my car and I stood in place for a moment and was looking around and out of nowhere It felt like a 500 pound weight had been lifted off me. I actually felt alive for the first time since all this started and I was clear headed. I could actually think, focus. The fog had been lifted. I was so excited! I came home to tell my parents the good news and they said I even looked better. I saw my Rheumatologist and he couldn't believe that it worked and that it only took a few weeks. He was know convinced I did have an Autoimmune Disease, but was it Lupus? I was doing better for a little while, but started having lots of flares, which I now know were the attacks I was experiencing. My doctor increased my Plaquenil to 400mg. I started doing better for a short time then started having flares constantly and was put on daily Prednisone. I also started getting chronic infections. Finally in the end of 2015 I was diagnosed with Common Variable Immune Deficiency and Cellular Deficiency. My Immunologist said the good news is there's treatment for CVID, but not Cellular. I started IVIG infusions and was extremely hopeful. I did a ramp up and on the low doses I felt great, but when it got higher I had horrible reactions! The goal was 30 grams a month. Right after the treatment I'd get very drowsy and it would knock me out for over a week. I was lethargic and pretty much just slept. My doctor adjusted the dose and tried several brands over time and we found my body could only handle 14 grams every other week. The bad news is from the time I started to the present I've only gone 3 months without any infections. They don't seem to be helping me, but why? My doctor ordered more labs and one test did come back positive for Hashimoto's. My doctor and I decided it might be best to take a break from the infusions. With all these going on my life had gone from bad to better to worse. I hadn't been able to work since my surgery in 2012, I couldn't make any commitments or even make plans because I didn't know how I'd feel from one day to the next. My quality of life was horrible. Through all of this I learned I had to become my own advocate. I was always doing research looking into a more healthy, natural, holistic approach. I had cut out gluten, dairy and soy and was taking a lot of supplements that I red about. Still nothing was helping. In 2017 my bowels stopped working again. Even Though I had biofeedback years ago, I still have to take laxatives to have a bowel movement. Over the years I tried everything from prescriptions to over the counter. The best that has worked for me is a cocktail of Senna, Cascara Sagrada and Alo. When I had stopped going I kept increasing the amount trying didn't variations. I think I got up to 18 or 20 capsules and when that didn't work I knew I had to get help. I went back over to the Cleveland Clinic in Weston, Fl and saw a colorectal surgeon. She ordered more tests. Based on the tests results she told me there was a good chance my colon had to be removed, but she said I could try biofeedback again. I found a PT locally and began therapy. While this was going on I had started reading about Functional Medicine. I had all these diagnoses, taking tons of medications, but no one could tell me the cause of anything and I wasn't getting any better. The only bad thing was I couldn't find any Functional Medicine Doctors who took insurance and they were extremely expensive. My close friends have been extremely supportive and they were sick and tired of seeing me sick and tired, so they put together a fundraiser. They raised enough money for me to start seeing a Functional Medicine Doctor in town who was also a D.O. I started seeing her in April of 2017 and saw her for 1 1/2 years. I was hopeful. When we met she told me I did have a very complex case, but she felt confident she could help me. She said I'm not going to get better over night and told me to give it a year. Her goal was to get to the root cause and figure out what was really going on. She also wanted to get me off as many medications as possible and treat me with a more natural approach. The first two things she did was put me on an anti-inflammatory diet and she started to taper me of steroids. She told me once I was off of steroids she was going to prescribe LDN which stands for Low Dose Naltrexone. She said in studies they found low dose Naltrexone worked for pain in people with Autoimmune Diseases. She ordered a bunch of labs. She told me I had leaky gut and that was the most important issue to work on right away. She put me on a ton of supplements. I started LDN at 3mg and increased to 4.5mg. It has really helped with stiffness and pain. I don't take any kind of prescription pain pills because I've had some type of reaction to all of them. She also took me off of Synthroid and Cytomel and put me on WP thyroid. I did the best while on WP thyroid. My weight stayed around 130-134 pounds, my brain fog was gone, energy and fatigue were better and hair wasn't falling out. Then WP thyroid went on back order and she put me on Nature thyroid. My thyroid levels started going up and down. For about 6 to 8 months I was doing better. Less infections, less flares, more energy, less fatigue and less pain. I then had an episode. I can't remember if it was a really bad flare or infection, but it was so bad we had to start from scratch. After that things just kept getting worse and she could no longer help me. While I was seeing her I still followed up with my doctors. She was just running the show during that time. This brings us to August of 2018. I saw my Endocrinologist and we decided I should go back on Synthroid and Cytomel. At the end of 2018, I began have hand tremors, sweating profusely and palpitations. My Endocrinologist ordered labs and my thyroid had gone from hypo to hyper. It was actually the PA who I was seeing and she adjusted my dose of thyroid medication. My fatigue, weakness, brain fog and pain were at an all time high. I saw my Rheumatologist and she said maybe it might be beneficial to go back to the Mayo Clinic for a second opinion. I said I was a little hesitant because it had not be successful in 2013. She said now we have so much more information and maybe they could take all that and put the missing pieces of my puzzle together. I told her I'd think about it. Between January and February of 2019 I put on 15 pounds. My Endocrinologist ordered labs again and told me my thyroid was still hyper and if anything I should be losing weight. My TSH had been .006 for quite some time. I still had the hand tremors and the other symptoms too. February 6th of this year my father underwent heart surgery and due to complications died on the table! We were devastated. My heart burn had stopped a couple years ago, but I started getting it again. I thought maybe it was due to all the stress. I was trying to keep it together for my mother, but not only was I extremely sad my symptoms were getting worse. My Endocrinologist PA adjusted my dose 4 times within 8 months and still it was hyper. My doctor told me he could no longer help me and referred me to the Mayo Clinic. I forgot to mention in March of 2019, I did see another Endocrinologist in town for a second opinion. I told him everything and he too couldn't explain the weight gain. I also told him I never did while on Synthroid. He asked me if I had ever tried Armour thyroid and I said no. He switched me to that, ordered more labs and wanted to see me back in 2 weeks. When I saw him, my thyroid was still hyper and told me he couldn't help me and referred me to someone else. I had seen my Neurologist, told him everything and he got me into another Endocrinologist. I saw the new doctor right before I left for Mayo. He agreed I should go to Mayo and he would wait to hear from me when I got back. I left for the Mayo Clinic on May 12th 2019. My first appointment was the next morning with the Endocrinologist. I told him everything and he too said all of my symptoms except for the weight gain were due to my thyroid being hyper. I asked him what else could cause this rapid weight gain and he said he did't know. That's fine if he didn't know right then and there, but I came all this way for answers. He should have told me he would do some investigating and if he couldn't come up with an answer he'd refer me to someone else. I ended up seeing a Rheumatologist who use to live in Naples and knew my doctor. He had pre ordered labs prior to seeing me. When he did see me he ordered additional labs after examining me based on my Livedo Reticularis. He asked me if he could call my doctor to discuss my case and I said absolutely! My Lupus Anticoagulant test did come back elevated so he had me start taking a baby aspirin, 81mg. I then saw a GI. Told him about my horrible heartburn even though I take daily heartburn medication, I get extremely full after only eating a some portion, I've been dealing with stomach distension for a couple years and issues with my bowels. My stomach looks like I'm 6 to 9 months pregnant causing horrible pain and I didn't know if it was GI related or if it was from my Endometriosis? He ordered several tests which were all negative except for the anorectal manometry. He said I had a bad case of Pelvic Floor Dysfunction which I was already diagnosed with in 2012. He couldn't give me any answers for my distention. I also say a Neurologist, Immunologist and OBGYN. So far I hadn't really gotten any answers. I ended up being there for 5 weeks. While I was there I had a horrible episode of heartburn which lasted 24 hours. I took everything I had and ended up throwing up repeatedly. I sent a message to the GI the next day hoping he'd order an Upper Endoscopy since the last time I had one was in 2016, but he just told me to increase my heartburn meds. All of my doctors back home had sent their records. I was also determined to walk as much as possible to try and get rid of this weight. I also noticed how puffy I was. I have a prescription for 20mg of Lasix to take as needed. I had been taking it and noticed I wasn't urinating much and my bladder kept feeling full. It took a week to get an appointment with OBGYN because they wanted my surgical reports. At the appointment I asked if they could tell if my Endometriosis was active? They said they had a special MRI that can detect active Endometriosis. I also told them about my unexplained weight gain and if it could be related to my hormones and if they would order labs? I told them about not being able to urinate much even though I was taking 20mg of Lasix and that my bladder felt full. They said let's just focus on your pelvic pain and Endometriosis. Again, I came all this way to have everything looked at, but they only ordered the MRI. I ended up walking almost 140 miles. I had an appointment 3 days before I left and had gotten on the scale. I gained another 10 pounds! I sent a message to my Endocrinologist and told him about all the walking I've done and the additionally weight gain. I said something it's right. The next day he ordered labs. When I got the results it was just for my thyroid. He sent me a message and said based on these labs the weight gain isn't thyroid related. I said ok. Then what is it from and again he said he didn't know! I had the MRI the day before I left. I was finally leaving on the 15th of June and I felt so defeated, disappointed and angry. Not to mention all the money I spent of travel, hotel, food, necessities and the bill from Mayo. I ended up spending almost $9,000 and for what! I got the results of the MRI when I got home and I didn't have any active Endometriosis. At least I could rule that out. Within 2 weeks of being home I had gained another 5 pounds. I woke up one morning and my feet, ankles, legs, right arm, hand and fingers were very swollen. I was in excruciating pain and felt like I was going to pop! I put a call into my Rheumatologist and they told me to come in the next day. My mother had to drive me because of how much pain I was in. When My doctor saw me she couldn't believe how swollen I was. While she was examining me she pushed on the swollen areas and I was pitting. I then told her about my visit to Mayo. She told me she did hear from the Rheumatologist at Mayo, but he told her he really didn't have any new information. She said she really needed help with my case and he told here I was going to be there a while and to wait and see what the other specialists came up with. She was so disappointed after we talked. She believed all the weight gain and swelling was due to fluid retention, but what was the cause? She increased my Lasix to 40mg and said if my urinating doesn't improve in the next couple of day I needed to see a Urologist. She also wanted to see me back in 2 weeks. The following week I had another horrible episode of heartburn that lasted 3 days. Again, I took everything I had, but every time I'd try and lay down it would just come back. This was the worse episode I'd ever had. After it finally went away I put a call into my GI and he ordered an Upper Endoscopy which I had done the following week. He took a few biopsies and told me my hiatal hernia had become wider. He said surgery was an option, but that would be the last alternative. He said there is a medication he could put me on that would help restrict the hiatal hernia, but he wanted to wait for the results from the biopsies. The biopsies came back negative, so he put me on Baclofen 10mg. He ended up increasing the dose to 20mg and so far I haven't had any heartburn. Things didn't improve with my urinating. I saw the Urologist the following week. I first saw the PA and she wanted to know everything. I told her and she said not being able to urinate much could be related to my Pelvic Floor Dysfunction, but she was going to discuss everything with the doctor. He came in and asking me some questions. He was shocked that I just got back from the Mayo clinic and no one looked into this. He said he believed the cause was Pelvic Floor Dysfunction. He also told me in his experience with this dysfunction normally it affects people bladder first then it may ended up affecting the rectum. He said I was the complete opposite. He did order to procedures to see what was going on. I had a Cystoscopy which I stayed awake for. As he was looking into my bladder, he didn't see anything unusual except for a few some polyps that he took samples of. When he got to the back of my bladder I saw this thing pulsating and said what is that? He said that is your colon. He said he'd done thousands of these and he's never seen a colon moving so fast and protruding out the way it was. He said that is probably what is causing the pressure in my bladder. He asked me who my GI was and if I'd had a colonoscopy recently. I said not recently and he said he was going to send the report to my GI and that something was going on wit my colon! I saw my Rheumatologist the next day and brought her up to speed. I told her the Urologist believed the issue with my bladder and the fluid retention were possibly 2 separate things. She then referred me to a Nephrologist and told me to also follow up with my Cardiologist. Why wasn't this all taking care of at Mayo? I am so mentally and physically exhausted! The following week I was suppose to have a UDS test and follow up with the Urologist, but I ended up getting the flu. I was in bed for 6 days. I did manage to put a call into the Nephrologist and Cardiologist and make appointments. I saw my Cardiologist this past Friday the 26th. I had already been diagnosed with a mitral valve prolapse. I told her everything that had been going on. She did an exam and said my lungs sounded clear, but when she was listening to my heart she heard a murmur. She said based on everything going on she was going to order an Echocardiogram. Next week I'm having the Echocardiogram and UDS tests and seeing the Nephrologist. From 2011 to the present my health has changed greatly. As you can see, it hasn't been from my lack of seeking information from different specialists. They all confirm there are many different issues at play, yet are not able to put the puzzle pieces together! I know my life as I once knew will never be the same, but at the very least, I would love to have a better quality of life. I'm praying you will consider my case and your team can help me get my life back!!!
List of medications: Allergies: Bactrim, Topamax, Relpax, Doxycycline, Zofran
LDN 4.5mg, Aspirin 81mg, Baclofen 10mg 2x's/night, Zantac 150mg 2x's/day, Omeprazole 20mg 2x's/day, Armour Thyroid 90mg, Cymbalta 60mg, Relafen 750 2x's/day, Gammagard 14 grams sub-q every other week(this has been put on hold for a couple months), Adderall 20mg 2x's/day, Aygestin 5mg, Lasix 40mg, Plaquenil 200mg 2x's/day, Candesartan 32mg(for migraines), Valtrex 500mg, Restasis 0.05% 1 drop 2x's/day, Emgality once a month, Botox for Migraines every 3 months, Tear Duct Plugs top permanent bottom every 3 months. As needed: Klonopin 1mg, Zanaflex 2mg 1-3 tablets, Compazine 10mg, Imitrex 100mg, Ketorolac 10mg 3 pills, Prednisone 10mg, Diflucan 100mg, Pulmicort 0.5mg/2ml. Supplements: Ubiquinol CoQ10 100mg, Vitamin D 8000 IU, Fish oil, Vitamin C 8000mg, L-lysine 500mg, Senna, Cascara Sagrada, Alo.
Diagnoses/conditions: Hypothyroidism, Hashimoto's, Lupus-like Autoimmune Disease, Sjogren's secondary, Endometriosis, Common Variable Immune Deficiency, Cellular Deficiency, Migraines, IBS, Slow Colon Transit, Raynaud's Syndrome, Pelvic Floor Dysfunction, Osteopenia of the hips, Osteoarthritis of the pelvic region, Livedo Reticularis, Chronic Bronchitis and Sinusitis, ADD, Anxiety, Depression, Candida, Hiatal Hernia, Chronic Fatigue Syndrome, Positive Epstein-Barr Virus