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.

Liked by molly48823

@3les54

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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I’m so glad to hear that! So am I. It took some time and my surrendering to the reality of my situation and reading books that were gifted to me at the right time, to return to my natural, optimistic state.

I really do understand what your wife is experiencing, though our symptoms differ. Prior to the onset of my challenge, I was full of vitality and energy. I was a marathoner and enjoyed HIIT activities and long hikes (10-20 miles) in nature.

Mindfulness, meditation and restorative yoga have helped me both accept what is and work toward what I envision for the future. Of course, i have had to learn real patience.

I still give myself time to feel the anger, disappointment, etc. But I set limits; I refuse to remain in a negative mindset. It takes up too much of my limited energy and hinders healing. Another great book for later is Biology of Belief, by Bruce Lipton, Ph.D. He was on the cutting edge of stem cell and epigenetic research.

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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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Drs have determined I have serum sickness – they say I have a long slow recovery ahead of me. Has anyone been through this – I would like to know what to expect

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@ljr316

Drs have determined I have serum sickness – they say I have a long slow recovery ahead of me. Has anyone been through this – I would like to know what to expect

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Hello @ljr316, Welcome to Connect. I wasn't familiar with serum sickness and did a search of Connect and found another member had discussed serum sickness in a post. I'm hoping @3les54 will be able to share what they have learned about serum sickness with you. It's good that you are asking questions and learning as much as you can about the condition. Here are a few articles that may be helpful.

NIH – Serum Sickness — https://www.ncbi.nlm.nih.gov/books/NBK538312/

Serum Sickness – causes, symptoms, diagnosis, treatment, pathology

@ljr316 has your doctor suggested any treatments?

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No treatments. I still can’t tolerate solid food and am very weak and confined to bed. Weight loss stopped at 15 lbs. I can make it to the bathroom myself. Terrible indigestion most of the time. She (Dr) suggests i consider a rehab/nursing home facility for recovery, but my husband is taking very good care of me at home.

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@3les54

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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Mayo is the best, just got to say! Especially with rare and autoimmune issues

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A diagnosis at last…. It has been determined that my wife has Micro Polyangiitis (MPA)/ANCA Vasculitis. It has done extensive damage to her kidneys and dialysis and an eventual transplant are indicated. Some damage to nerves, lungs, and heart area (not the heart itself) occurred. Hemoglobin has also been negatively affected. She is hospitalized and undergoing treatment. Chemotherapy will likely start today or tomorrow.

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@3les54

A diagnosis at last…. It has been determined that my wife has Micro Polyangiitis (MPA)/ANCA Vasculitis. It has done extensive damage to her kidneys and dialysis and an eventual transplant are indicated. Some damage to nerves, lungs, and heart area (not the heart itself) occurred. Hemoglobin has also been negatively affected. She is hospitalized and undergoing treatment. Chemotherapy will likely start today or tomorrow.

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@3les54 Good morning. I’m so glad your wife finally got a diagnosis and is getting care! Waiting, worrying, and not getting better are just so awful! My sister, too, has MPA-ANCA and is doing well with treatment. I’m going to ask her to return to this discussion to see what information and support she can give your wife. Is your wife being treated locally or at a medical center?

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@becsbuddy

@3les54 Good morning. I’m so glad your wife finally got a diagnosis and is getting care! Waiting, worrying, and not getting better are just so awful! My sister, too, has MPA-ANCA and is doing well with treatment. I’m going to ask her to return to this discussion to see what information and support she can give your wife. Is your wife being treated locally or at a medical center?

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She is at a medical center for the next few days.

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@3les54

A diagnosis at last…. It has been determined that my wife has Micro Polyangiitis (MPA)/ANCA Vasculitis. It has done extensive damage to her kidneys and dialysis and an eventual transplant are indicated. Some damage to nerves, lungs, and heart area (not the heart itself) occurred. Hemoglobin has also been negatively affected. She is hospitalized and undergoing treatment. Chemotherapy will likely start today or tomorrow.

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Dear 3les54 Thank you for being one of the very best husband's there can be. So caring, so wonderful, your wife is blessed to have you. You are appreciated by many. Thank you for being so wonderful a person.

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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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Has your wife been tested for autoimmune encephalitis? Sounds like it might be paraneoplastic and I’ve heard many people got AE after a flu shots, but the ovarian cyst is the main cause. Many times autoimmune encephalitis is connected to an ovarian cyst. She should have the autoimmune blood panel and also a lumbar puncture. Her local neurologist an order the blood panel and then send it to Mayo in Rochester for testing. Please speak to a doctor at a hospital that is familiar with this, so many doctors and hospitals are not. Lots of info online. Youtube has lots of information about it. Let us know how she is doing.

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@3les54

A diagnosis at last…. It has been determined that my wife has Micro Polyangiitis (MPA)/ANCA Vasculitis. It has done extensive damage to her kidneys and dialysis and an eventual transplant are indicated. Some damage to nerves, lungs, and heart area (not the heart itself) occurred. Hemoglobin has also been negatively affected. She is hospitalized and undergoing treatment. Chemotherapy will likely start today or tomorrow.

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I’m the sister referred to by Becky! I also have MPA with rental involvement diagnosed 4 years ago. Do you know what chemo drugs she will have? I took several that stopped the advancement of the kidney disease which is probably their main focus right now. After months of high powered drugs, things settled down to a new normal. Will be happy to discuss off line with you if that will help, Molly

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@molly48823

I’m the sister referred to by Becky! I also have MPA with rental involvement diagnosed 4 years ago. Do you know what chemo drugs she will have? I took several that stopped the advancement of the kidney disease which is probably their main focus right now. After months of high powered drugs, things settled down to a new normal. Will be happy to discuss off line with you if that will help, Molly

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Right now she is being treated with rituxan and steroids. This may change after the kidney biopsy. A major concern right now is the low hemoglobin count. It has improved with transfusions, iron infusions, and the treatment mentioned though.

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@3les54

Right now she is being treated with rituxan and steroids. This may change after the kidney biopsy. A major concern right now is the low hemoglobin count. It has improved with transfusions, iron infusions, and the treatment mentioned though.

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Yes, I had Rituxan with high steroids, followed by other toxic drugs for about 6 months. Plus whatever to address low hemoglobin count which took a long time to get to where it was consistently at a safe level. Tell her biopsy may be uncomfortable but not painful and over with quickly. Just try to relax during the procedure.

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@molly48823

Yes, I had Rituxan with high steroids, followed by other toxic drugs for about 6 months. Plus whatever to address low hemoglobin count which took a long time to get to where it was consistently at a safe level. Tell her biopsy may be uncomfortable but not painful and over with quickly. Just try to relax during the procedure.

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Your treatment is the same as that recommended for my diagnosis of AAG. How long have you been on the treatment and what has your experience been? Do you feel better, worse, or about the same? Have there been any complications?

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@molly48823

Yes, I had Rituxan with high steroids, followed by other toxic drugs for about 6 months. Plus whatever to address low hemoglobin count which took a long time to get to where it was consistently at a safe level. Tell her biopsy may be uncomfortable but not painful and over with quickly. Just try to relax during the procedure.

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This is Leslie…thanks for logging on. I have SO many questions! Are you back to your normal life – energy level – are you in remission.

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