Autoimmune mystery

Posted by 3les54 @3les54, Nov 6, 2019

In mid September, my wife went to the doctor about a sore throat. Not so unusual,since she us a high school teacher and is exposed to a variety of things throughout the year. She was also running a low grade fever, usually in the afternoons, but wasn’t at the time of her visit to the doctor. She was given a short course of antibiotics. While she was there she was persuaded to take a flu and Prevnar 13 shot (she is 65). By the time she got home, a rash developed at the injection site. By the next day, her back was covered with a rash two feet wide by three feet long. It looked like a poison ivy reaction. She continued to work but got weaker by the day. She did not want to go back to the doctor. At the end of September, I took her to the ER because of her deteriorating condition and she was experiencing periodic double vision. They did a pretty full work up on her (including a head and neck cT scan, one with iodine and one without, and xrays). She has mild bronchiectasis and the doctor – focusing on her low grade temperature and white blood cell count concluded she had a mild case of pneumonia. Two powerful antibiotics were prescribed and she was sent home. My wife has never taken much medication, and after three days the antibiotics had pretty much destroyed her stomach. On day four she stopped taking them. She had Abdominal pain and nausea. Her appetite began to fade. The rash was still present a month after it first appeared. Back to the doctor. We were referred to a neurologist, a pulmonologist, a rheumatologist and she underwent extensive testing, including for west Nile, HIV, valley fever, lupus, Sjögren’s, RA, and myasthenia gravis. She tested positive for RA but showed no symptoms of it. Negative on everything else. She continued to decline. I took her back to the ER and they admitted her to the hospital. Her kidneys were beginning to fail. In the hospital, the tests Continued. She could not (and still cannot) tolerate solid food because of the intense nausea. At the hospital she was given three different anti nausea medications through iv. She was even throwing up water. After four days, kidney function improved and the nausea was alleviated by medication. She was sent home. That was three weeks ago. Since then, she has remained very weak and has nausea almost all the time. She ingests only Boost/Ensure and water and occasionally a few tablespoons of cream of wheat. Since this started, she has lost 12 lbs, and is to all intents an invalid. The weight loss has stopped. The rash is gone. Every other day she consumes about 800 -1400 calories. The rest of the time we are lucky if she takes in 300-400. At times, she has muscle pain in her jaws. She can walk only 10 feet unassisted. We are trying major league probiotics, CBC oil and drops, vitamins, and electrolyte supplements. In short, after innumerable visits to the doctor, numerous phone consultations, 74 vials of blood drawn for testing, CT/MRI/X-ray, four days in the hospital, we are no closer to an solution or explanation than we were when we started. The nausea renders her incapable of sleeping more than three hours at a time. She drinks copious amounts of water (dry mouth). Her temperature spikes every afternoon between 6 and 7 pm at 100.5-101.8. Tomorrow we have more blood tests to monitor kidney function, to test for infectious disease, and to do a CT scan of her stomach and abdomen. Needless to say, her career as an AP teacher and Academic Decathlon coach are over. At this point, the best diagnosis we have is a general severe autoimmune disorder. Has anyone experienced anything similar? Our HMO doctors seem to have no definitive answers.

I can’t even imagine your wife’s suffering and your anxiety as you cared got her. I’m so glad she has you as her advocate. I am thinking of both of you and praying that there will be an answer for you soon.

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@3les54 I'm so sorry to hear about your wifes problem and know your both so concerned. I didn't see where you said you saw a Endrocrinologist , or Immunologist maybe one of these Dr,s could help her . Another thing have you gone to a teaching hospital like a University hospital or Mayo if you have one close to you ? Just suggestions for you Good luck let us know and please keep in contact we here care for each other .

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As lioness has already suggested, is it possible for you to go to a teaching hospital or to where I and my family have had excellent results when we've had concerning health issues – Mayo Clinic(Rochester, MN). My one year old grandson spent months going to regional hospitals and finally a university hospital to try and find out why he was having periodic high fevers of 105 degrees or more that would sometimes even put him into convulsions. They finally made an appointment with Mayo and within "one" day had diagnosis and were sent home with medication that totally cancels out the high temp spikes whenever they occur! Good luck and keeping you and your wife in my prayers.

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@3les54 – your wife is so lucky to have you as her advocate. Does she have a primary care physician who actually should keep track of what’s happening and what specialists to see?
You mention that she is going to have a CT of her stomach and abdomen- is this the first time? Also, has she seen a gastroenterologist? Endoscopy and colonoscopy?
I had an autoimmune disease that at times I was to weak to get out of bed, just lying there panting. However, your wife seems to suffer so much more. Hope you get answer soon!

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Thanks to everyone for the responses. As of yesterday our HMO has drawn in the past 5 weeks 94 vials of blood for testing, CTs/MRIs/xrays/ultrasounds on every part of her anatomy. A large ovarian cyst of a common type was discovered, not related to her current situation, but more importantly Infectious Disease Dept tested her for cytomegalovirus (cmv). She tested positive. A follow up confirmation test was done with results due by Monday or Tuesday. If CMV isn’t the problem, we will go to USC in Los Angeles, or Mayo, for help. Getting to and from the hospital exhausts her.

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@3les54

Thanks to everyone for the responses. As of yesterday our HMO has drawn in the past 5 weeks 94 vials of blood for testing, CTs/MRIs/xrays/ultrasounds on every part of her anatomy. A large ovarian cyst of a common type was discovered, not related to her current situation, but more importantly Infectious Disease Dept tested her for cytomegalovirus (cmv). She tested positive. A follow up confirmation test was done with results due by Monday or Tuesday. If CMV isn’t the problem, we will go to USC in Los Angeles, or Mayo, for help. Getting to and from the hospital exhausts her.

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Can I ask you what kind of specialist your wife saw to find she has CMS? Who would you see at USC.
I have the same symptoms, not that severe. Saw hematologist and Rhematologist, none know what's wrong, except blood tests every six months. I don't know if they do care or not. It's been almost two years and think I should find new good doctors who care. I do have HMO but in Los Angeles the medical group or network are the one who control every thing. I'm now ready to go to outside the insurance and pay my own. I have to control my own health not some medical groups who only care about $$$

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@american

Can I ask you what kind of specialist your wife saw to find she has CMS? Who would you see at USC.
I have the same symptoms, not that severe. Saw hematologist and Rhematologist, none know what's wrong, except blood tests every six months. I don't know if they do care or not. It's been almost two years and think I should find new good doctors who care. I do have HMO but in Los Angeles the medical group or network are the one who control every thing. I'm now ready to go to outside the insurance and pay my own. I have to control my own health not some medical groups who only care about $$$

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@3les54 I know what you mean I'm fed up with my medical group and am switching to another group in Jan. Hope this one is better as now that refused so many meds for fibromyalgia and the need for certain medications. Dr is fed up with it also no wonder good Dr,s leave this practice .

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Kaiser Permanente’s Infectious Disease Dept think it might be CMV based on preliminary tests. Besides ID, we have seen a rheumatologist, nephrologist, pulmonologist, neurologist, internist, and family practitioner.

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@3les54 Glad to hear you are finally getting closer to a diagnosis

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At this point, the best the doctors can come up with is that my wife is suffering from ‘serum sickness’. It was immediately after taking the flu and pneumonia shots on 16 September that her immune system ‘blew up’ and began attacking her body, so it is hard to argue with that opinion. Essentially, we are left with the sole option of treating the many manifestations of AI,and hoping that with rest and nutrition, the immune system will calm over time. The continuing indigestion and nausea and periodic daily low grade temperature spikes are a barrier to achieving that goal, but fight on we will.

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Many of these symptoms sound very familiar to me. I have had double vision for two years. Blood tests have been negative for myasthenia Gravis but when I became ill with similar problems this summer I have been diagnosed with mg. I have a new neurologist and am under treatment. I am 81 years old and seldom feel well but I am encouraged.
Please get the doctors to consider treating her for ms! I get IVIG every 4 weeks. I take Celcept and steroids (slowly reducing these).

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I have recently been diagnosed with multiple Auto immune disorders (like back to back). I have also had ton of tests, blood work, and specialists this past year but decided to see a functional medicine doctor last month. She spent 3 hours with me and my detailed symptoms. She ordered several non-conventional tests including heavy metal levels and EBV. May be worth a try for your wife. Functional medicine doctors are focused on root cause of illness so may be a good adjunct to what you are already doing. Hope that’s helpful! Prayers for your wife!!

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I think the upcoming tests will come up with something. Please keep us informed. Zenk

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Good Morning,

I’m saddened to hear of your wife’s struggles. I know personally how frightening it can be to suddenly become ill, seemingly without any warning. But please speak life concerning your wife’s situation. Her career is NOT over, merely delayed for a time.

In May 2015, I went running like any other day and it was a wonderful run. After stretching and getting into my car I proceeded to have a syncope episode for no apparent reason. In the wee hours of the night, I was rushed to and admitted to the hospital. After three days, I was discharged and referred to a neurologist. Just three days prior, I had accepted a position in another state and was excited. Since things had not yet worsened, I believed whatever was happening would pass. It did NOT. By mid-July 2015, I awoke imprisoned in a body foreign to me. My red and white blood count was low. I was severely deficient in all major vitamins and minerals. I was hypersensitive to light, sound, and smells. Chronic fatigue, pain, and insomnia became my constant companions. I went from reading and analyzing 100-150 pages per day to feeling like 15 pages were a marathon. Chronic brain fog and memory issues became the norm. Needless to say, I was devastated and terrified. I was rotated through doctors and lived at the lab. I was told everything from it’s just stress to I’ve never seen anything like this.

I knew there was an answer and I’m privileged that I am a researcher. It has taken 4 1/2 years to get to the answer, really to confirm the one I found three years ago. Over that time, I had to go on disability for 2 1/2 years. I’ve worked since I was 13. In April 2016, I almost died because what doctors were doing to help me was killing me, since they were unaware of my diagnosis.

I returned to work, before I received the diagnosis, from the Mayo Clinic, about two months ago. Yes, everyday is a struggle but I’m grateful for how far I’ve come. I remember when I also thought I will never be able to return to doing what I love. I attribute my improvement to a number of things. At the top of the list is what I think, feel, and believe about my condition. I shifted from fear and the belief that I would never get better to believing I would eventually find the answers and I would get well. Our bodies are designed and have the capacity to heal if we give it what it needs. I really encourage you both to read Mind Over Medicine, by Lissa Rankin, MD. She is a Ivy League trained allopathic/Western doctor turned board certified functional medicine doctor. Although the book is well researched, it is not a difficult read.

I also thought my illness “just happened” out of nowhere. I now realize that there were subtle signs before it’s onset. I’m happy to chat more and share resources, if you and your wife would like. On my journey, I sought answers from traditional, allopathic medicine as well as alternative and functional medicine. I found that both have their benefits…when you find the right fit for your needs. One has to be very discerning since chronic illness is big business.

I’m praying for your wife and you. Your wife will get better and there is an answer. I don’t know how long it will take but it will happen. You both have to believe it too. “What we choose to believe becomes our reality.”

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@fmgeorge

Good Morning,

I’m saddened to hear of your wife’s struggles. I know personally how frightening it can be to suddenly become ill, seemingly without any warning. But please speak life concerning your wife’s situation. Her career is NOT over, merely delayed for a time.

In May 2015, I went running like any other day and it was a wonderful run. After stretching and getting into my car I proceeded to have a syncope episode for no apparent reason. In the wee hours of the night, I was rushed to and admitted to the hospital. After three days, I was discharged and referred to a neurologist. Just three days prior, I had accepted a position in another state and was excited. Since things had not yet worsened, I believed whatever was happening would pass. It did NOT. By mid-July 2015, I awoke imprisoned in a body foreign to me. My red and white blood count was low. I was severely deficient in all major vitamins and minerals. I was hypersensitive to light, sound, and smells. Chronic fatigue, pain, and insomnia became my constant companions. I went from reading and analyzing 100-150 pages per day to feeling like 15 pages were a marathon. Chronic brain fog and memory issues became the norm. Needless to say, I was devastated and terrified. I was rotated through doctors and lived at the lab. I was told everything from it’s just stress to I’ve never seen anything like this.

I knew there was an answer and I’m privileged that I am a researcher. It has taken 4 1/2 years to get to the answer, really to confirm the one I found three years ago. Over that time, I had to go on disability for 2 1/2 years. I’ve worked since I was 13. In April 2016, I almost died because what doctors were doing to help me was killing me, since they were unaware of my diagnosis.

I returned to work, before I received the diagnosis, from the Mayo Clinic, about two months ago. Yes, everyday is a struggle but I’m grateful for how far I’ve come. I remember when I also thought I will never be able to return to doing what I love. I attribute my improvement to a number of things. At the top of the list is what I think, feel, and believe about my condition. I shifted from fear and the belief that I would never get better to believing I would eventually find the answers and I would get well. Our bodies are designed and have the capacity to heal if we give it what it needs. I really encourage you both to read Mind Over Medicine, by Lissa Rankin, MD. She is a Ivy League trained allopathic/Western doctor turned board certified functional medicine doctor. Although the book is well researched, it is not a difficult read.

I also thought my illness “just happened” out of nowhere. I now realize that there were subtle signs before it’s onset. I’m happy to chat more and share resources, if you and your wife would like. On my journey, I sought answers from traditional, allopathic medicine as well as alternative and functional medicine. I found that both have their benefits…when you find the right fit for your needs. One has to be very discerning since chronic illness is big business.

I’m praying for your wife and you. Your wife will get better and there is an answer. I don’t know how long it will take but it will happen. You both have to believe it too. “What we choose to believe becomes our reality.”

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Thank you for sharing your journey, your insights and your observations. We are optimistic by nature and are adept at adjusting to new circumstances. Right now we have good days and bad days, with the latter prevailing 4/1. Indigestion (stomach burn) subdues her appetite, sometimes to 0. Liquid calorie intake every other day is 700-1400 per day…no solids. The weakness is hard for her to take (4 months ago we hiked Canyon de Chelly top to bottom and back, and three months ago she was a hyper-charged AP teacher and ACADEC coach). Keeping her spirits up is a challenge, but I am good at pep talks. Thanks for the reading suggestions. I will order right away.

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