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  • Symptoms consistent with Lymphoma

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    Old 04-26-2019, 12:04 AM   #1
    thaiboxgirl
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    Symptoms consistent with Lymphoma

    Hi everyone, Iím extremely frustrated. I am sorry this is so long and detailed, because I want anyone who feels like responding to gain a very clear picture in regard to what my symptoms are, the timeline in which they progressed.

    A year ago my family doctor (who since has moved to a different practice) noticed generalized swollen lymph nodes. They werenít super large, however since I had been experiencing severe fatigue and many other symptoms that could perhaps be consistent with blood cancers, and just because my father had non-hidgkins and very similar symptoms, he wanted to rule that or similar out, just to be safe. My labs were in normal range, a couple were borderline, but still he sent a referral to an ENT/surgeon in case we need a biopsy. He also referred me to a blood specialist, as I had swelling on one side of my neck and shoulder, I would get a rash in the exact same area as well as top of my chest. Itís hard to describe and I didnít think a cream medicine would help at all just by the sensation I felt when it appeared. It felt like a mild sunburn, and shirts and clothing was really irritating. This wasnít all of the time, about once per day it would flare up. I felt nauseated, I had spine pain, my veins turned much darker blue then usual, they were swollen (not my normal), and I felt lumpy in different areas, such as my wrists. He sent me to a hematologist to be on the safe side. I went to the hematologist and she said she had no idea why my doctor sent me to her, but she examined me and said that with normal labs there wasnít much to worry about, though she canít rule out Lymphoma, and if I had lymphoma it could be low grade, so maybe not needing treatment, or it would be end stage so there wouldnít be a lot we could do anyhow. In other words she couldnít say I donít have cancer, but then she said was pretty sure I didnít have anything to worry about. I question her choice of wording.

    My primary also sent me to an ENT who ordered an ultrasound on my lymph nodes and found they were reactive but nothing indicating a tumor or cancerous. He tested me for everything viral and all clear, and found I had mononucleosis (2nd time in my life) and he explained that my EBV kicked up, Iíd likely be sick for a few more months (I never had a sore throat this time around). I had ANAís but nothing further found as far as rheumatoid or autoimmune. He suggested biopsing a lymph node, try course of steroids, or watch and wait. I chose to watch and wait. A few months later I started to feel somewhat normal, no longer severe fatigue, yet still a little. I felt I was on my way back to my old self.

    Fast forward to a few months later (this past March), and the swelling on the side of my neck has travelled to the other side, and the rash is off and on but mostly on throughout the day, every day. My face is blotchy and darker in most areas, my fatigue is worse than before, and I am much weaker. Last month my thyroid (TSH) Suddenly dropped for the first time in 22 years (I have hypothyroidism and take levothyroxine). My ENT Decreased my dose. I went back for a follow up to my ENT and he said my parotid gland felt swollen, but my lymph node there is swollen. I have minor swelling on the other side as well, but I feel a pea sized movable lymph node, so not sure if that caused swelling and it went back to normal or if itís still there. My eyes are inflamed so I was prescribed Restasis. While looking at my past blood results I noticed that my platelets have been on a steady decline since my fatigue started a year ago. The count has dropped in increments, and while always normal range, itís a pattern (327 a year ago, then a couple months later 315, 300, a few months ago 290, then 286 10 days ago, now 242). Now I feel even weaker than Iíve ever felt, and my last blood test was April 15th. It feels like immflamation is always there in many parts of the body, but it gets worse off and on throughout the day. I have a swollen collarbone on the same side as the swelling in my neck. I have what feels like little clumps on my ribs, conglomerates of something, they are round feeling. Now it sometimes hurts my stomach when I eat, I feel nauseated, but havenít vomited. Ive had night sweats only a few times in the entire past year, but Iíve had chills a lot of the time. My ENT told me a few weeks ago that if my TSH level is normal and still have these symptoms he will give me a steroid pack to see how my body reacts, therefore then telling him if he should head down the autoimmune diagnostic path.

    I just want to know who should I go to for answers? PCPís only want to treat with meds or refer out, referrals take forever. Iíve had to go to so many different doctors, but if an issue is not their specialty they donít even look at it. It seems no one here considers that a list of symptoms could be a sign of an underlying issue. I watched my dad battle NH lymphoma and his symptoms started same as mine. I have been under severe stress for years, and separation from my husband and I know that can kick up EBV. Iím miserable, but with two kids, one on the autism spectrum, I have to push through every day. Iím a Muay Thai instructor, but now after a hard workout it takes a few days to recover. I donít want to stop living my life, I feel like Iím trapped inside a failing body and I want answers.

    Thank you for reading.

     
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    Old 04-26-2019, 12:05 PM   #2
    JohnR41
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    Re: Symptoms consistent with Lymphoma

    Hi thaiboxgirl,

    I happen to be interested in diets so I did some research to see what the best diet would be for someone in your situation. I didn't expect to find anything but, to my surprise, I did. It seems that the rise of NH lymphoma is linked to diets high in dairy products, meats, eggs, and saturated fats. And this type of diet that is high in animal protein is at the same time low in healthy plant foods like fresh fruit and dark leafy-green vegetables. In other words, you should be eating high-fiber healthy plant foods. To round it out, I would add whole grains, legumes, nuts and seeds. Of course, whenever animal protein is eliminated completely, a small B12 supplement is required.

    Perhaps you were already aware of this. Did your father eat this type of diet?

     
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    Old 04-26-2019, 12:36 PM   #3
    thaiboxgirl
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    Re: Symptoms consistent with Lymphoma

    Hi John, thanks for your reply. No my father did not eat this way at all, we grew up on a small farm among dairy farms with the typical American meat and potatoes diet (lots of roundup used in the area by the way). I think the diet you are speaking of is definitely the best diet, as in the past year the only time Iíve felt ďnormalĒ was when I was at a five week Muay Thai instructor training course in Thailand. We ate primarily vegan, and I had very little inflammation if at all. After coming home, even eating healthy foods in the US felt bad on my stomach. Since then Iíve tried my best to eat the diet you mention, but with small amounts of meat. My friends in Thailand are health ministers and believe Lymphomas and many cancers can be cured through diet and active healthy lifestyle. Right now Iím so exhausted, and with two older teens eating through my refrigerator it is hard to cook good vegetarian meals unless I can find very basic, basic recipes. I am taking a vitamin B12 though.

    My ENTís nurse said I should go to urgent care so Iím not suffering all weekend. I donít want to go, but the side of the face where I have the hard lump on is starting to feel weak, i see it in my eye. Iím worried they will just say I need to go to the ER. Last time they diagnosed me with bells Palsy and doesn't even examine my lymph nodes or the bump I complained if. They just gave me a facial CT scan that showed nothing. But at least I can ask urgent care to run some blood tests and then I can see if my platelets are still dropping.

    I will begin eating the diet you discussed. I may have no other choice if I want to be healthy enough to continue teaching classes. 😊

     
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