Posted 11 August 2016 - 04:15 PM
Quick Introduction: I am a 29-year-old female who is in very good shape and eats very healthy. I’ve been teaching abroad in China with my husband for the past few years. I got very sick in late March of 2016 and have been on a long, hard journey to figure out what is wrong. It has been a lonely journey as many people doubted me along the way and questioned my sanity. I feel like I should share my story because there are so many people out there who have probably experienced something similar and I want you to know you’re not alone. It is now August 11th of 2016 (about 5 months later) and I finally figured out what is wrong with me despite being told by several doctors and family members that I should see a psychologist or that I was just stressed out or depressed.
Doctors I have seen since March 2016
4 Emergency room visits (4 ER doctors)
1 Neurotologist (ear/throat)
1 Internal Medicine doctor
1 Functional Medicine doctor
1 Nurse Practitioner
In total: 18 different doctors plus a nurse practitioner
I am a young healthy woman who loves to run, hike, and travel with my husband. I was living and teaching in China when I first got sick. My chest started to feel tight sometime in early to mid March of 2016. I didn’t think much of it, thought it was a cold and ignored it. Then on Wednesday, March 23rd it got much worse. I had just gone for a jog and throughout the entire run it felt different when I breathed in. It felt like there was pressure on my chest and a tingling/burning sensation. The feeling of tightness/pressure felt much worse and it made it difficult to breathe in. I went to a doctor in China that day. They checked my heart and lungs through a CT scan, echo of the heart, and an EKG. All turned out normal and fine so they said I was fine and to go home.
The days that followed, it got much worse. It felt as if there was intense pressure on my chest and in my chest. It felt tight inside and out, as though all the muscles were tight. Almost like a cramp. It felt like the muscles in my arms and chest were really tight and fatigued. There was also a constant tingling sensation in my chest, like electricity and sometimes the skin on my chest felt like it was burning. Then the Friday following my initial appointment with the doctor, my left arm started to tingle. It was a tingling sensation that went from my upper back down to my hand and my arm felt as though it were numb or had “fallen asleep”. That weekend the chest cramping progressed and I went to the ER. They were not helpful and told me I was just stressed.
I went to the doctor that Monday (28th) and they again checked my lungs and heart, said they were okay, and decided to give me medication for GERD (heartburn). My symptoms only worsened; the tingling sensation was in my chest and left arm but also moved to my other arm as well as my legs. I began to feel very weak, my muscles ached, I felt sore and tired even though I hadn’t done anything. I felt like I was losing my fine motor skills such as sending a text or tying a shoe. I also had a difficult time clenching my hand into fists. My arm muscles felt weak and the tingling made it very uncomfortable to move my hands/arms. My legs started to feel the same way and it was difficult to even walk.
I began to have intense pain in my neck; it was a feeling of dull pressure but was also a sharp pain at times. I went to a neurologist in China on March 30th and they did an MRI of my cervical and thoracic spine. They said it was fine and that nothing was pushing on my spinal cord and they didn’t know what was causing the tingling sensation. The doctor told me nothing was wrong and that I should see a psychologist.
I decided to immediately fly to America the weekend of April 2nd to see a doctor there. At that point my whole body felt extremely weak, my muscles fatigued, my chest felt very tight, my extremities were tingling, and I had developed an intense sharp, burning pain in my neck. The pain and the tingling from that section of my neck radiated down my back and up my neck. At times my neck muscles felt so tight; the tightness radiated up to my mouth and made it feel numb and I would get a strange feeling of nausea in my throat/mouth.
I went to the ER in America on April 2nd. They completed blood work as well as a CT scan of my lungs. They found an inflamed section of my left lung. They diagnosed it as pneumonia and prescribed me with an antibiotic. (I later learned from another doctor that I probably didn’t have pneumonia but most doctors seem to love handing out antibiotics). The ER couldn’t explain the tingling sensation but referred me to a neurologist.
The following Monday the 4th I was able to get an appointment with a neurotologist (ear/throat doctor of sorts). He did some tests with balance and my ears (I assume to rule out such things as MS? I was so confused) and diagnosed me with the flu. He believed I had the flu at some point, my immune system was compromised, and that a secondary infection of sorts (possibly herpes zoster?) took over and attacked my nerves. However, he never did any kind of blood work to confirm this. He prescribed me with Tamiflu and Amantadine (a really old antiviral) and also gave me two steroid shots in my neck for the nerve pain. That week I had intense chest pressure, so much so that I couldn’t sleep at all. The neurotologist said I should have my heart and lungs checked AGAIN just to be sure and again nothing was wrong with them. I later found out that neurotologist was known for being full of crap and always diagnosing people with some form of “herpes take over”.
During this time my parents seemed to think stress was a cause of a lot of my symptoms. My husband seemed to even doubt me. I felt so utterly alone. I knew something was wrong and was determined to figure it out.
By May 3rd, I had finished the Tamiflu and didn’t feel any better. I saw another neurologist who drew blood for an ANA screening test, which came back positive (1:320). I also saw an internist who drew blood for an ANA panel/profile which all came back negative (no lupus, etc). He also checked for tons of viruses and other possible causes of my symptoms (all negative).
At the time, my head had so much pressure, especially at the base of my skull and it also felt warm around the base of my skull and on my ears. I had intense pain in my neck and upper back with that same feeling of numbness in my back and arms. The tingling would still come and go in my arms; sometimes I would wake up numb all over. The tingling and numbness had worsened in my legs. My legs felt heavy and extremely weak. I also had joint pain in my hips and knees, to the point that it kept me up some nights. I felt so weak and fatigued all over, especially my muscles. My leg muscles ached. My lower back also felt very achy. My chest was still tight/had lots of pressure and the skin had a burning sensation inside as well as on the skin. Sometimes my chest even felt numb.
I was given pain medication (tramadol), muscle relaxants, and gabapentin (nerve pain meds) to mask all the symptoms but doctors couldn't figure out what was wrong. I was sent from specialist to specialist to specialist…. Totaling almost 20 doctors in all. I went through so many tests. All while taking tons of pain medication just to mask the symptoms. When the meds started to wear off, the pain and tingling would immediately return.
I went through test after test after test spending thousands of dollars. I cried almost everyday because I was so scared and had no idea what was happening. Doctors seemed baffled and started to doubt me when all of these tests kept coming back normal. I started to even doubt myself at times, thinking I was crazy. There were times I was certain I had multiple sclerosis or lupus or cancer…all these negative thoughts kept running through my head. I wasn’t sleeping and I was losing tons of weight.
The GP I was seeing finally tested my vitamin levels sometime in June (after I asked her to). Turns out my vitamin D was low as well as iron, ferritin stores, and B12. She didn’t seem to think the levels were that low and never prescribed or suggested any B12 or vitamin D replacement therapy. (B12 was at 190, Vitmain D at 32, I was anemic, ferritin store was at 6). She just said I was okay and sent me on my way saying I should just take magnesium for the muscle pain. She seemed so removed and didn’t care that I was in pain. She just seemed to want to get me in and out as quickly as possible. She didn’t offer any other remedies or try and delve further into what was going on.
Luckily I started to see a functional medicine doctor in June who prescribed me 50,000 iu of vitamin D3 a week plus B12 shots for a month. I was also instructed to take iron (I take Slow FE). She also monitored all of this through blood tests. I immediately saw improvement!! Slowly the tingling, numbness, plus muscle and joint pain dissipated. I had more energy. It took a few weeks but I could definitely feel a huge difference.
However, the chest pain was still there. I saw a GI specialist who ran many more tests including an upper endoscopy and he diagnosed me with gastritis. He also gave me a PPI for the heartburn. After taking the PPI for a couple of weeks I had extreme bloating, cramping, and stomach pain. I had an MRI of my stomach and intestines done and it came back normal. To make a long story short, I was finally diagnosed with Small Intestine Bacterial Overgrowth (SIBO) in early August through a hydrogen breath test (after ingesting lactulose). I will start taking Rifaxmin tomorrow. The chest pain (I assume) is most likely acid reflux, a symptom from the bacterial overgrowth and all the pain, numbness, and weakness I experienced previously was from the nutritional deficiencies caused by SIBO.
Now looking back I think there were signs of SIBO that I completely missed and ignored. I knew my stool was strange in China but I always assumed it was because I drank too much coffee (my BMs were always in the morning after coffee). My stool was soft or borderline liquid, strange smelling, and it looked oily. I also had extreme burping and gas but assumed it was from all the beans and vegetables I was eating. I think it is possible that the traveler’s diarrhea I experienced upon first moving to China may be the cause of the SIBO and I just ignored the signs. Meanwhile it was slowly stealing all of my nutrients and I never realized it until it was too late. I think having low B12 can really wreak havoc on your body!!
Has anyone else experienced SIBO this way? Only noticing the nutrient deficiencies first? Then finding the SIBO later? How did people treat you while trying to figure out what was wrong? How many tests did you have to go through? I can’t even count the number of tests I’ve had done and the different diseases that were considered as the cause.
Also, any suggestions on how to completely eradicate SIBO are greatly appreciated. I am going to take 1650mg of Rifaxmin daily for 10 days, eat a combination of the SCD and low-fodmap diet, take glutamine, take Iberogast for the motility of the small intestine, butyrate (a stool test said I was lacking this as well as diversity in bacteria), take a probiotic daily, and take enzymes. I don’t know what else to do. I would love to hear success stories.
Also, have any women experienced intense cramps and pain during their periods after IBS or SIBO issues started?
Bottom line, fight for your health!
Don’t allow others to dictate how you think and feel when it comes to your health. I hope this story helps others who are in search of an answer.
Posted 10 September 2016 - 06:43 AM
Thanks for such an in depth story on your situation and boy, have you been through a lot! You sound like you've really done your research and I applaud you for being strong and persistant in your journey.
I'm 47 yo female, living in Midwest (Kansas City area to be exact) and have similarites to your situation.
Yes, I believe you are correct that nutritional defeciency show up due to SIBO. I am also iron, B12, B6, potassium and magnesium defecient and have been for about 3 years despite regular use of supplements and healthy diet. The bacteria will rob nutrients in the small intestine.
I've not been through the extensive tests you have. Primary care physician and I thought possible gall bladder about 3 years ago and went for ultrasound. It showed "shadowing consistent with gall stones" but no wall thickening, inflammation,blockage, ect. Liver, pancreas, spleen, kidney all good. I decided to keep my gall bladder and do flushes. While it did help reduce abdominal pain, it still was not a cure.
Last year, in August, I was given a referral by a friend to see a chiropractor/homeopath that uses a type of computerized frequency/biofeedback machine that can tell what is going on in the body. Sounds weird, I know I was sceptical, but he found I had h pylori, SIBO and Lyme plus two co-infections. He put me on supplement/homeopathic to eradicate the Lyme and h pylori and a candida type of cleanse for SIBO. Plus I took Betaine Hydrochloride to raise stomache acid and digestive enzymes to breakdown food. Probiotics and bovine colostrum for gut healing. Not kidding you, in one week I had major improvement. Stopped feeling like I'd been punched in the stomach, bloating gone, regular bowel movements and more energy.
Unfortunately, I had strep rash (scarlatina) three times from October to February and was on antibiotics so my symptoms came back and I've had to restart the protocol again. Interestingly, the symptoms started 4 years ago following antibiotics and steroid for an infected cyst. I believe the use of antibiotics, for me at least, have been the major culprit in my SIBO. While sometimes neccessary, they do cause dysbiosis.
I don't have all the answers as I'm still a work in progress. There is a majority of doctors and researchers on this subject that feel a large percentage of IBS is really SIBO/candida. You might also look at possible parasite infection as you've been a foreign traveler and may have picked up something.
You asked about menstrual cramping increasing. I've read that iron defeciency can cause heavier flow which may increase cramping. What type of iron supplement are you taking and how much to get your ferritin up? I'm on Feosol carbonyl iron 45mg four times daily plus blackstrap molasses, vitamin C, l-lysine and chlorophyll for absorption. Have ferritin checked every 12 weeks until you reach 50-70 and then go on maintenance dose. I'm still at 35 after 7 months supplementing. It takes 120 days to build new red blood cells from bone marrow. B12 is water soluble and you cannot overdose. Methyl forms are better for me.
He's some of the symptoms I've had over the past 3+ years:
Severe abdominal pain
Bloating, gas, nausea, dry heaves
Upper back, shoulder, neck pain
Pins and needles in feet, legs, hands, scalp
Brain zaps (feels like electrical shocks from mid-spine to top of head)
Air hunger, can't get a full breath
Orthostatic intolerance, low blood pressure, hypovolemia
Joint pain, muscle aches, headaches
Feeling of ants crawling, restless legs
Heart palps, racing heart
Burning, dry eyes; floaters
Hair falling out, dry skin, brittle nails
Diarrhea in morning, constipation later in the day
Low body temperature, feeling cold all the time
Internal shaking, not anxiety
Most of these are gone or much improved.
Testing I've had:
Full thyroid (no hypo or Hashimoto's)
Full cardiac workup with ultrasound, calcium CT, stress test
According to my doctor, nurse practitioner and cardiologist, I'm perfectly healthy except low iron and potassium. Only the chiropractor has helped get me back on track and been the most valuable resource.
What I've done/used:
Gentle exercise, stretching, walking
B complex plus methyl B12/methylfolate
Potassium, magnesium, calcium, pink Himalayan salt (electrolytes)
Omega 3/6/9 flaxseed oil
Vitamin A, E and lots of C
Betaine Hcl, digestive enzymes
Colostrum powder, l-glutamine
Olive leaf extract
Antiparasitic: black walnut hull, wormwood, clove tincture
Sacchromyces boulardi, B coagulans, probiotics
Lugol's iodine, selenium
Epsom salt baths, castor oil packs
I don't know if you'll come back to read my reply as it's been a month since your original post. Hopefully this information helps you. If anyone else reads this, I hope they will research also and look for natural ways to help treat symptoms. Everyone is different and should take care to be under a doctor's care or understand what they are using and go low and slow. The body takes time but given the right nutrients, it can heal.
I wish you much blessings in your search for optimal health!
Posted 10 September 2016 - 07:21 AM
Posted 02 November 2016 - 05:48 AM
I am currently going through testing for Candida overgrowth, SIBO and parasites. I would love to get in touch when my results come back (should be in 2 weeks time)!
Posted 21 June 2018 - 05:30 AM