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  1. Just seeing. Your blog. I have Celiac Disease and lactose and dairy intolerance. I have a busy life. 7 kids, 7 grandkids and my best friend of 45 years and has lived with us all this time now has Dementia. I am her caretaker. I have basically lived on drive thru food and deserts. I have had a steady health decline to the point I am tired just from walking downstairs. I spent last 3 weeks almost totally in bed. Test results blood tests told me what I already knew. This time I have the choice of changing most things or getting worse. You happen to have been first thing I saw today on Pinterest. So here I am. Thank you,

    1. Hi Jacque. Welcome to our blog! Thanks for reading and sharing your story. I can personally relate to your chronic fatigue. I felt that it was impossible to recover but unexpectedly proved myself wrong. It really is never too late to start making changes. Good for you to making the choice to take that first step towards healing! I have no doubt that your body will thank you. 🙂

  2. Hey! First of all, thanks for these two posts. I’ve been in a similar position for just over two years now. I am chasing down symptoms of autoimmune diseases without ever getting a diagnosis. I’ve finally concluded that my body is just attacking my weak points. So now, I focus on recovery and maintenance.
    I’ll be sure to read through the rest of your posts to find more useful tips.

    1. Nick, thanks for reading. We are not alone! I meet more and more people in our same position… we all have a mixed bag of antibodies and symptoms with no diagnosis… but like you said: focus on recovery and maintenance. At least through my personal experience, we can begin to make changes and feel well even without a diagnosis. Thanks for sharing and good luck with your healing!

  3. I just got diagnosed with MMN disease. I started to get IVIG treatments. I’m experiencing fatigue and pain I never felt before. With the treatments I also experienced my WBC dropped. I’m going to hang in there.

    1. Ava, I am sorry to hear about your diagnosis. I have heard wonderful things about IVIG treatment and I am considering it for myself. I am sorry to hear that it’s not improving symptoms yet, but I think you have the right mindset to hang in there. You will get through it! Sometimes the healing process makes things worse before they get better. I am praying for you, Ava! Thanks for reading.

  4. So fascinating to read about this part of your journey.
    I was diagnosed with (likely) Lupus in late Fall/early Winter of 2016. I waited for 8 months for a referral appointment with a rheumatologist. My labs on that day showed high levels of inflammatory activity but not necessarily Lupus. I was given a diagnosis of Undifferentiated Connective Tissue Disease.
    While I was waiting for my referral, I mentioned some new, worrisome symptoms to my PCP. She recommended I see a Neurologist. I waited to see what the Rheumatologist would say about these symptoms. She recommended I see a Neurologist as well. I did.
    Three weeks after my UCTD diagnosis, at the age of 45, I was also diagnosed with Parkinson’s Disease. Managing both diseases is challenging to say the least. I turned to blogging as an outlet for my frustration and it has turned into a bit of therapy. I share my journey at: https://www.justshakeitoff.com

    Thank you for sharing your story and allowing some of us to feel less alone.
    – Nikki Louiselle

    1. Hi Nikki. Wow. I am sure those two diagnoses were hard to hear. It’s always bittersweet when you finally have some answers, but now have to live with them for the rest of your life. I absolutely love the name of your blog and I am so happy you have found it as a therapeutic outlet… We can totally relate to that, as we feel the same about our blog. Thank you for taking the time to share you story with all of us. As you said, sharing each others’ stories makes us feel less alone. I am praying for you!!

  5. I came across your blog a month ago and have been having a lot of “Ah Ha” moments since doing so. I have not been diagnosed with an Autoimmune disease, but in my soul, I know that it is the source of my problems. On both sides of my family are Autoimmune Issues ranging from Fibromyalgia, Hashimotos, Lupus, Alzheimer’s (not sure if it is classified as AI) and a vast range of food and environmental allergies. I have had issues with Tonsilitis my entire life, which left me with many “Mono” like symptoms. After having my youngest daughter 7 years ago my health has gone down hill and 3 years ago I had a case of recurrent Ebstein Barr Viral infection that has never gone away? It is now being considered Chronically Active Ebstein Barr virus, that feela like I live everyday coming down with the flu/chronically fatigued. Since then I have developed 13 food allergies and 13 food intolerances. I am overwhelmed and feeling frustrated all the time. After many specialists and doctors telling me I am chronically inflammed and maybe Fibromyalgia, I went to a Functional medicine doctor. My doctor put me on countless amounts kf supllements which helped take the edge off in the beginning, but now leave me with severe nausea everyday. After 4 months of nausea I gave them up. I feel a little better, but not. I have made many, many diet modifications, but have not gone totally gluten and dairy free. Like you I thought 90% would suffice. It doesn’t? I go to the Samsun Clinjc in Santa Barbera for another opinion and hope I have a clearer answer. But, like you, I think I know what I need to do. I have read countless hours of research on AIP and know I should. I guess I’m waiting for the actual diagnoses to feel like what I am feeling is real and not just a Virus, even though much research has shown Viruses, Leaky gut, tramatic evens and genetic dispositiin to be 4 key events in developing an AI disease.
    If you have a moment to read my message, any extra motivation would be much appreciated. I’m stuck in a rut.
    Sincerely,
    Elizabeth Colby

    1. Hi Elizabeth, I live in Carpinteria and was diagnosed with Hashimotos almost 2 years ago. Have you found a Doctor at Sansum in Santa Barbara that will do testing and treatment for autoimmune diseases? I have gone to a couple doctors there and am looking for someone that will do testing and possibly prescribe LDN as they are in network for my insurance and the functional practitioner I see is not a fan of LDN.
      I also have a genetic predisposition and tested positive for an EBV recurrence. Chronic stress seems to be a factor as well. I would be interested to exchange notes on treatment options in the area.
      Elise

  6. Wow I feel like I was reading my biography. I have changed neurologists 4 times now and 2 rheumatologists. I now drive 130 miles one way to see my neurologist, but I am getting answers. I was told I have CIS MS, and ankylosing spondylitis.

    1. Hi Kris, I am so sorry to hear about your diagnosis – those are two very difficult diseases and I can only imagine how that feels, both physically and emotionally. We also travel far to see the doctors who give us answers. It’s inconvenient but totally worth it. Thanks for reading, Kris! And good luck on your healing journey. We are praying for you.

  7. Thank you for your hopeful outlook and info about the need to keep trying. I have tried a number of times over the years to learn more about diet and even did an elimination diet to attempt to find what gave me problems. I welcome any additional info that might help. I have a very strong family history of autoimmune diseases. My mother has pemphigoid, my sister MS and so many of us have fibromyalgia. I was first diagnosed with the fibromyalgia and chronic fatigue in my mid thirties after falling from a treadmill and badly injuring my SI joint. My fibromyalgia only became worse and I had to start working part time only. I had a near fatal car accident that damaged me in so many ways and left me disabled to the point that I now have few days out of bed and able to do much at all. I hate it so much. I was the driven perfectionist who loved her career, doing things for family and so many activities we did on a regular basis. I have learned great patience and more empathy, so some good has come from this. Gentle hugs and prayers to all those suffering.

    1. Hi Vanessa, I am so sorry to hear about your struggles. I can identify with many of them… I know this is not easy. I think that many of us tend to try changing our diet first, because it is a “low hanging fruit”… or so we think. Sometimes diet can be so complicated and you may need to bring in some help to help you troubleshoot. You may want to consider hiring a certified Autoimmune Protocol diet coach to walk with you while you figure out the diet that works best for you. There is a list of them here: http://aipcertified.com/coach-directory/. In the meantime, you can shift your focus to another area of your life that needs to be addressed. For example, how’s your sleep? Are you exposed to toxins throughout your day in the form of mold, cleaning products, etc.? How about managing your stress? All of these go hand in hand, which is why a completely holistic approach is needed for autoimmune disease. I know you can find the answers you need, Vanessa. We are praying for your recovery!

  8. My friend went through something like this with her daughter (connective tissue disease, pain, vision problems) for YEARS. They thought she was exaggerating or faking but they eventually discovered it was Ehlers Danlos. Her joints were so loose she had her shoulders dislocating. It also effected her vision because her brain was actually sinking into her spine. She had to have brain surgery to correct her vision and it worked. She also has celiac disease. https://en.wikipedia.org/wiki/Ehlers%E2%80%93Danlos_syndromes

    1. Hi Jessica! Interestingly, I literally just learned about Ehlers Danlos. I’m happy your friend’s daughter finally reached a diagnosis… but it seems like it was a very rough road getting there… a story so many of us can identify with. Thanks for sharing. I hope your comment can help someone else avoid such a long road to a diagnosis.

  9. Hi Anna With all of your auto-immune problems, have you ever heard of or tried LDN?
    It is a very interesting drug that is helping a lot of people.

    1. Hi Judy, yes! I was on LDN about 4 years ago because my thyroid antibodies were so high. It worked great in terms of lowering my antibodies. I go into a little bit more detail in this post. I am considering it as part of my next step if I am not able to turn all these antibodies off, but so far I am feeling pretty good in comparison to when I wrote this post and just received some encouraging test results. It’s a really nice option to have on the back-burner though, especially in comparison to other options of drugs out there for autoimmune disease. Thanks so much for reading and taking the time to comment, Judy!

  10. Have you considered the effects of the blood transfusions you received on your immune system? According to NIH, the odds of developing an autoimmune disease go up dramatically after an uncomplicated transfusion. If you reseach blood transfusion autoimmune you may be suprisec at what you find. If you already had autoimmune issues it could make it worse. Hope you find a workable solution.

    1. Hi Jayne, yes… My doctors and I both think that the blood transfusion was the major trigger for this, but of course it would be hard to prove. The good news is that I’ve made a lot of progress since I wrote this post and have hope for a full recovery. Thanks for making this comment, Jayne, as I think we all need to take these types of triggers into consideration, even if some doctors tell us there’s no possible link.

  11. Wow, I’m so glad I found your post! I too had a hemorrhage after pregnancy and have been dealing with odd symptoms and pains since about 3 months afterward. I was sent to a rheum who discovered a positive ANA. When she ran the ANA ID panel, all came back negative with the exception of Anticentromere B (Systemic Sclerosis) which came back “Indeterminate”. She ran it again 2 months later with the exact same result. I have had so many debilitating symptoms that move and change, and my rheum has given me the impression she thinks I am just postpartum and depressed. I have begun to lose hope with all of this, which is tough when you have a baby- as I’m sure you well know! I have been doing the AIP diet now for 2 months and have made a lot of great progress, but every re-intro I’ve tried has failed and I do not have 100% remission of symptoms (still some numbness/tingling, GI issues, and random pains). Do you have any advice on re-intros? I am starting to lose hope that I will ever be able to eat somewhat normally again! And I’m terrified to think I might have the deadly Scleroderma brewing! I hope you can help!!
    Thank you!
    Laura

    1. Hi Laura,

      First, congratulations on your baby! And I applaud you for already taking steps towards reversing your symptoms, despite no official diagnosis. Just from that alone, I know you will be successful in reversing your symptoms, so please do not give up on hope. You are already one step ahead.

      Regarding your progress with the AIP diet, I know from my own personal experience, as well as reading about others, that sometimes it can take longer (6 months to a year) before experiencing complete remission of symptoms and enough healing to be able to reintroduce foods without flaring. I, too, struggled intensely with reintroducing foods and decided after 6 months to work a functional medicine practitioner to test for problems in my gut. We found some bacterial overgrowth so I spent a few months treating that, and then was able to successfully reintroduce some foods after. There were a few other things I did, too. I talk about it all in my post: How I Healed My Leaky Gut and Finally Reintroduced Food without Flaring.

      If you find that even after a few more months on the AIP diet, you’re still not experiencing the healing you hoped for, you can read this post about troubleshooting the AIP diet. Also, do you have a functional medicine practitioner? If not, finding one to add to your healthcare team might really help you figure this out, especially since they have access to various types of testing to help you pinpoint what’s going on.

      Of course, everyone is different, but my symptoms were at their worst by 6 months post-partum, and it took me about a year or so to reverse them completely… so it did take some time. I’m sure the lack of sleep and hormonal changes from having a new baby didn’t help, but once those things balanced out, I felt a lot better.

      Do NOT give up hope, Laura!

  12. I have been sick for so long I keep trying to find an answer to my pains but all I get is there is nothing wrong you! You are just depressed.

    1. Ellie, I was also told by countless doctors that I was depressed… but we both know that’s not the case! Keep searching for your answers. Have you tried working with a functional medicine doctor who has access to a wide variety of testing?

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