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Autoimmune? Undiagnosed and don’t know where to go next
I am posting here in hopes that someone out there has experienced something similar or can at least tell me where to turn next when it comes to figuring out my illness. A friend of mine who has lupus said it sounded like it could be autoimmune but I really don’t know anymore!
The following chunk is going to be a long medical history and I apologize, I just want to give as much information as possible in hopes of getting help.
I was born premature but had amazing algae scores and was sent home that day. My mother tells me I was always sick as a baby with chronic throat infections of some kind or other. She made the doctors remove my tonsils before I was 2 in hopes that it would help but it didn’t seem to. Growing up I remember always being sick. I seemed to get every bug going around but was always especially susceptible to strep throat infections and sinus infections. I was sick so much that by highschool I am pretty sure I only was actually able to attend around 2/3 of the total days in the school year. Maybe even less than that and this wasn’t me staying home with colds, this was constant stomach flu, upset respritory infections, and of course strep throat. I also had constant hives and dermatographia since I was young and still have it to this day! The doctors always wrote it off, saying it was probably a food allergy, but never really looked into it. I also never ran fevers as a kid and instead run at a constant 97.6.
In 2016 my constant bad health seemed to take a turn for the worst. Right after graduating highschool I got so sick I was bedridden for the whole summer. I was throwing up, having joint pain, and sleeping all the time. No fever but I NEVER run fevers. After a month of it my mother took me in to my family doctor. She ran a mono test and Lyme test which both came back negative but she was sure it was mono so she told me to come back in a few weeks. I did but the test was negative again, and then again when I came in another month later. My white counts were high but they couldn’t figure out what was wrong other than that. Finally after 4 months I got better and stopped going back to the doctor, just in time for me to go to my freshmen year of college.
I made it through my first semester, despite the fact I got stomach flu and strep a few times but then part way through my second semester I got sick again. I was throwing up to the point I had to be hospitalized for fluids. All of my lymph nodes were so swollen I didn’t even look like I had a neck and was having a hard time swallowing. This time it turned out I actually did have mono. I had to leave my college and go home to recover. It took a total of about 4 months to get better but I never felt 100% again after that. My doctor told me it could take up to a year to feel fully better so I decided to take time off of college and get a job.
The job lasted about three months. I was so tired in that time that I would get up to go to work, struggle through my shift, go home, and immediately go to sleep. I was only awake about 10 hours a day but I figured it was just because I wasn’t used to working and would adjust. Then I started developing severe joint pain and stiffness, to the point that it was hard to get up off the couch simply because I couldn’t unbend. Both of my parents have rheumatoid arthritis so I assumed it was that and went in to my doctor for testing. I was only 20 and knew I shouldn’t be feeling as old as I suddenly felt. She ran an ANA that came back normal. A week later I passed out in the shower. My parents and I assumed maybe the water had been to hit and left it at that. Another week later I passed out at work. The fainting episodes became a normal part of my life which led to me quitting my job.
I went to see my primary physician again but she was clueless. She ran a complete blood count, metobolic panel, and tested me for Addison’s disease. It all came back fine aside from a slightly elevated white blood count. She then referred me to doctor number 2, an internist.
Doctor number 2 was probably the best I had ever seen. Listened to my story then tested me for dermatographia before I had even mentioned the hives or dermatographia. He sent me to an allergist.
Doctor number 3, the allergist. I explained the dermatographia and the fact that I had it, along with hives, since I was a kid. We had never been able to link the hives to any food and explained that sometimes I would break out in hives because of the heat or because of crying or getting stressed. He told me he couldn’t test me with the scratch test because I had dermatographia but that he could test my blood for allergies. He told me he didn’t think this would be helpful however because the would only be able to test for a few things and he said my hives sounded idiopathic. I went home without the test.
I followed up with my internist, doctor number 2, but while the nurse was taking my vitals she found I had a heart murmur. I was sent for an ultrasound of my heart and they found I had a mitral valve prolapse but told me it was nothing to be concerned about. I went back in later for the follow up and the nurse took my vitals and found I had a heart arythmia. They gave me a 24 hour heart monitor. I only actually ended up wearing the monitor for 20 hours because the sticky pad things they used caused my skin to blister up and peel off.
The cardiologist I saw, doctor number 4, told me my heart murmur was benign and then went on to suggest that maybe I was on too many medications due to the fact that I take an anti anxiety, and antidepressant.
Back to doctor number 2, my internist. He gave me two different anti-histamines and sent me home in hopes it would improve my symptoms.
All of my symptoms kept getting worse. I developed brain fog, trouble concentrating, headaches, and none of my previous symptoms improved. I turned to the internet in hopes of figuring out why I was fainting and read about postural orthostatic tachycardia syndrome or POTS for short. I went to my doctor that week and asked if he had ever heard of it. He told me he didn’t think that was what I had, as it was rare, and sent me home. My mother convinced me to go back and demand to be tested, and it turns out I do have POTS. On an average day, my heart rate laying is 55 and it jumps to 130 when I am standing.
Thankfully now that I know what is going on I was able to start managing symptoms and hoped it would help with everything from the fainting to fatigue, joint pain to brain fog.
I started developing new symptoms. My brain seems to scramble words when I read now or it messes up grammar. I have a persistent pain in my left side that doctors can’t explain. My rib cage in the front on my left side also goes through flair ups where it hurts when I breath and I have been developing migraines.
The fatigue got worse until I was only awake about 2-4 hours a day total and all of my lymph glands swelled up again. It felt like when I had mono so I went in to try and figure out what was going on. My internist sent me to doctor number 5, an infectious disease specialist, who told me I had a mono reactivation. At this point it had been exactly a year since I left college with my first bout of mono. He said it was really rare and he wanted to test my immune system. He ran a complete blood count, C-reactive protein test, t-cell test, and a few others. Everything came back normal.
My doctor said he had no idea why I got mono again and seems to have no idea what to do with my other symptoms! I want to ask for more tests but I don’t even know what tests to ask for anymore or what doctors to ask to see and I am afraid they are going to diagnose me as a hypochondriac!
Currently my symptoms are
– dermatographia
– hives (particularly when upset but often without obvious cause)
– migraines
– joint pain
– joint stiffness
– Nausea
– loss of appitite
– brain fog
– trouble concentrating
– extreme fatigue
– vomiting, sometimes without even feeling ill beforehand
– dizziness
– pain in my left side, about where my spleen is, but doctors say my spleen is not enlarged
– pain in my ribs sometimes when I breath that lasts a few hours
– no fevers ever.
-numbness and tingling in my hands and feet at times
– mouth ulcers. (I have had these since I was a kid. The come and go. I sort of get break outs of them)
Anyone have any ideas? Anything helps. I just want to go finish college and move on to my career but can’t do that while I am this sick! I am a 21 year old white female if that helps anything.
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@beanie300 My sister, who also has autoimmune diseases sent me the name of this book, which she found very good. Her husband is a toxicologist at MSU and he recommends it. “The Autoimmune Epidemic: Bodies Gone Haywire in a World Out of Balance—And the Cutting Edge Science that Promises Hope” by Donna Jackson Nakazawa. I hope to read it when my brain fog clears! Sure hope we can all get something out of it! Becky
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2 Reactions@beanie300 and @becsbuddy here is a link to the book Becky mentioned.
https://donnajacksonnakazawa.com/autoimmune-epidemic/
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1 Reaction@johnbishop thank you! For finding all this information!
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2 ReactionsGlad to help! I noticed she also has a YouTube video on the topic that you can watch.
Donna Jackson Nakazawa: The Autoimmune Epidemic (1hr 28min)
-- https://bit.ly/2E3LQud
Bcsbuddy- I am on a roll now and will order the book you recommended as I am now a believer in diet alteration, something I resisted for years. Like many I have proven to myself my diet has aggravated my health issues. In middle age I developed Allergic Contact Dermatitis, ACD, in which I must avoid many everyday chemicals even natural elements for the rest of my life. Now its a fact based on my recent diet, that my diet had been aggravating my internal symptoms: chronic yeast, mild ankle swelling and internal itching or stinging inside my skin layers with no rash, even with all ACD contacts avoided, plus in the last two years developed 2 new rarer forms of eczema. I also had Adult Leukemia, CLL, an autoimmune disease for 15 years without treatment yet as I was a smolderer, but surprisingly to all including my doctors, a miracle happened and 5 years ago my blood counts started reversing and today 20 years after diagnosis all aspects of blood normal, even both lymphocyte counts. Very rare for this to happen with this chronic disease.
Grateful of course I am not dead today from leukemia but my other autoimmune issues have been challenging.
Yes, I had cut out the gluten a year ago and noticed no improvement, yet my sister did and the improvement was dramatic for her colitis and massive ankle swelling. Today she can tolerate adding back minimal gluten and no ankle swelling.
I made up my mind to do what I had been dreading, a true anti-yeast, anti-inflammatory diet which was reported to help with eczema also. I gave up all processed sugar and also all fruit. I gave up all carbs, not just gluten in wheat, all carbs meaning no corn, oats, rice. Zero processed foods. No cheese, unless fresh as it doesn't contain fermentation. No nuts that can contain mold, like peanuts. Yet lots of food choices- tons of veggies. Walnuts ok. Eggs. Pro-biotic yogurt, kefir allowed but no other dairy. All healthy oils allowed, even butter. Lots of good unprocessed meat, fish or poultry. Stevia- the only sweetener allowed which I used in my plain protiotic yogurt. Yet the final thing to do is give up Stevia because until I do that my tastebuds will still expect something sweet, even if it is not feeding the residual yeast in my intestines.
Dr. William Crook, in his book The Yeast Connection Handbook, originally written in the mid 90's which many doctors scoffed at, but now medical research is proving correct about his theory of a gut/brain relationship. His basic premise is that the medical field simply wants to market prescription anti-yeast drugs, steroids and such and not solve the problem, simply treating it and thus it will be chronic. We must always go back for more treatment. My volume updated in 2006 with postscript listing proven natural yeast killer supplements that work as well as as prescriptions.If interested I will give you the names. He wrote up a 2 month plan to lower inflammation by starving out the yeast in our intestines because it was sending messages to our brain to give it the food it needed- sugar!!!!
As foretold, the first 3 weeks were a challenge, as I was in the habit of a nightly dish of ice cream or grabbing a piece of fruit, cookie or other sugar snack during the day. I quit alcohol 3 years ago and this addiction was harder to give up because I thought about sugar all day. Whereas with alcohol a bell went off in my head at 5:00 pm for my drinking to start, but during the day never gave alcohol a thought. Dr. Crook wrote that the sugar urge would slowly go away. By week 5 I noticed I wasn't thinking about sugar much, because the yeast in my intestines was starving and dying, it was no longer sending messages to my brain demanding a sugar fix. At that time several yeast issues were lessening and one yeast symptom was gone for the first time in years. Also the internal stinging inside my skin (an eczema issue) was mildly starting up again faded. Because of this internal inflammation I required an annual corticosteroid shot of Kenalog 40, due Dec 1. (We all know the dangers of steroid use, both internal and external treatments). Now after the full 8 weeks no yeast issues. No cravings. I can now slowing reintroduce good carbs and limited fruit consumption. Still no processed sugar for life, but today looking at sugar does not make my mouth water and holds no interest. I have lost about 8 pounds and need to stop the loss, as I am not overweight, but adding back good carbs should take care of that.
Today I am a believer, dealing with zero yeast issues and my inflammation levels clearly lowered. Yes the diet was a challenge for about a month, if I could have popped a pill to curb my sugar cravings I would have tried that first. Yet so grateful I stuck it out. If you are not suffering you will not be motivated to try a detox diet. . Avoiding pain is a real motivator for me.What makes it hard is not knowing if the sacrifices you are making will make any difference. I would think little jingles in my head, "When will you learn, it's gonna make you burn." as well as others when I wanted to eat something sweet. Also hard as I always have to look at sweets as my 50 lb overweight diabetic husband insists on a house stocked with homemade dessert, ice cream and candy. If you could purge your house house of these visual reminders of sugar it would help.
Now I will order the Nakazawa book mentioned by Bcsbuddy to keep learning. I am super excited!!!
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2 ReactionsAlthough I appreciate others looking deeply into the history of what is causing such an increase of auto-immune diseases,this i not the type of book/books I am searching for. I also respect those that want to read about global warming and all the environmental crisis's we have and are currently dealing with, this would be a good book to read. I just finished reading reviews of Nakazawa book many said it was discussing environmental changes and toxins in our foods and products that are leading to health issues, but gave no specifics on solutions. Many found it depressing and it made the feel helpless.
Right now at age 70 I am all about solutions- how can I improve my health in my "golden years". Of course I do what I can: recycle, conserve water and other know helpful things, yet in my next 15 years (I have left at best) recycling will make no difference with my diseases. I need books that don't just reiterate all that is wrong with the world, but tell me how I can change my life to live pain free so I can lead a productive and joyful life. I need solutions for my health issues. Selfish? I prefer to think of it as realistic. I know the chemical industry has led to the development of all my allergies. Old news and true for me personally. These chemicals and additives caused allergies making me miserable. When this came about in middle age I was sleep deprived for months and during my long sleepless nights of misery I would plan on the cleanest and least painful way to commit suicide. Modern medical science developed the testing for me to find out the names of my Allergic Contact Dermatitis,ACD, tormentors and saved my life. Now I could solve the mystery of the cause of my itching, burning and stinging. I knew what to avoid. Solutions. My anti-inflammatory diet books have given me solutions. This is the kind of self motivating book I need to read.
If anyone has a loved anti-inflammatory book or a book about improving our heath with our auto-immune diseases that has solutions, something I can work on and change in my life I would appreciate the name. Also hats off to others that have the energy and drive to try to save planet earth.
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1 ReactionHi @gardeningjunkie -- Dr. Terry Wahls book - The Wahls Protocol got me started on trying to eat healthier and learning a little more about cellular nutrician. She has a good TED Talk that might provide some more insights.
TEDxIowaCity: Minding Your Mitochondria with Dr. Terry Wahls
-- https://terrywahls.com/minding-your-mitochondria-dr-terry-wahls-at-tedxiowacity/
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1 ReactionThank you John for the recommendation of the Wahls book which got you started with diet alteration. That's exactly the type of reading material I am looking for. Honestly never heard of cellular nutrition and think it's time I learned.
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2 ReactionsGreat post. Regarding stevia, It causes me severe hot flashes so I consider myself allergic. Did you ever use honey for a sweetener? Would that be a sugar you cut out?
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1 ReactionI didn't realize stevia could cause allergies. What are your symptoms. I use maybe 1/16 of a teaspoon in my morning plain yogurt. I cut out all sugar, even natural in fruit.