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Lymph problem update
I went in for my mammogram today. The axiallary lymph node has been prominent for nearly a year now and measures 2.5 cm. mammogram though breasts are cystic looks great, it's just the large axiallary node that is concerning. Doctor immediately asked if I had had rheumatoid testing and I said that results were low positive but consistent with my Hashimoto's diagnosis. She then asked if I had been tested for Lyme and or TB. She said that it sounds like a chronic lymphatic disease and says that the large axiallary node's texture rules out lymphoma and carcinoma in general. Yay! But she said that sarcoidosis, Lyme, tb, and other chronic lymphatic infection/disease must be further investigated. She recommended a lymphectomy to have the large axiallary node studied in depth. She was surprised that it has stayed enlarged for such a long priod of time and that it is not waxing and waning like my other nodes. Now, all I have to do is find a doctor that is willing to perform the lymphectomy. I wonder if they can test for bacterial/fungal/viral infection with a lymphectomy??? Does anyone know? Getting a step closer:). Anyone with lymph nodes that do not wax and wane or has had a lymphectomy i'd love to hear more about your personal experience!
I don't think you are whiny at all. I think you are handling the situation with considerable reason and grace -- and that is no small feat.
You express your anxiety and concern so well, and it is all very very understandable. If you were just blowing it off by suppressing all the concerns, it would be worse for you to keep it bottle up, and not only do you express your concerns so well, you are very logical and reasonable at the same time. Let's put it this way: I'm a lot crankier when I've had a bad day at work than you are while dealing with this illness. Points to you.
I am especially touched that you are trying not overload your husband with your concerns. That is a lovely thing, and he is a lucky man to have you.
Did you see the LLMD yesterday? Your message on the 12th said you would see him 'next Monday' -- which would have been the 15th, if I counted correctly. This being the end of the day of the 18th, wondering if you had the appointment yet and how it went.
We're rooting for you -- I think you are showing great fortitude in the face of some fearsome things. Hold on -- we're with you.
You express your anxiety and concern so well, and it is all very very understandable. If you were just blowing it off by suppressing all the concerns, it would be worse for you to keep it bottle up, and not only do you express your concerns so well, you are very logical and reasonable at the same time. Let's put it this way: I'm a lot crankier when I've had a bad day at work than you are while dealing with this illness. Points to you.
I am especially touched that you are trying not overload your husband with your concerns. That is a lovely thing, and he is a lucky man to have you.
Did you see the LLMD yesterday? Your message on the 12th said you would see him 'next Monday' -- which would have been the 15th, if I counted correctly. This being the end of the day of the 18th, wondering if you had the appointment yet and how it went.
We're rooting for you -- I think you are showing great fortitude in the face of some fearsome things. Hold on -- we're with you.
Lymphectomy was scheduled today for May 3rd. I am so stinking nervous! I am so scared, I keep telling myself that it's Lyme (believe it or not I'm more scared of cancer than Lyme though neither is a winning situation), but I can't get certain symptoms out of my mind that sway towards cancer:
Unexplained weight loss (no change in diet, diminished activity)
Enlarged lymph nodes growing larger for approx 2 years
Pain in chest closer to the back paralleling my esophagus (feels like medistinal lymph nodes swelling)
Pain in the bottom of feet especially in the morning with no B 12 deficiency
High blood calcium
Odd frequent cracking of joints (clavicle pops every time I take a deep breath)
Weird grayish color of left hand (comes and goes) (now that I think about it my largest lymph node is my left axiallary...I need to stop thinking)
I was on a medication that has "in rare cases" caused lymphoma (caused extreme bruising, hair loss, and odd posterior chest pain and lymph nodes began) stopped med after 3 months, but side effects continued to worsen
Father died at age 52 of medistinal germ cell cancer
I keep telling myself that my CBC doesn't indicate cancer, I've had a CT and it just reported shotty adenopathy (not really concerning), and every time I get the awful lymph swelling in the chest (now everyday) that I almost certainly can taste mucous excreting in my throat, so that is more indicative of infection. Also, the US of the lymph node that they are removing was said to have texture indicative of infection, not lymphoma.
All of this great news and yet I can't stop my fear! Probably due to all of the "ct scan missed my lymphoma" posts on the web. Oh ye web can be a helpful yet scary place. Also, I have constant sinus drainage and extreme lymphatic pressure. I don't know that those are symptoms of lymphoma, but I don't really go looking for the symptoms either bc it's too scary. I just can't imagine that if it's infection, even Lyme, that my nodes wouldn't wax and wane at all, though.
Ugg, I hope you guys don't think of me as a complete paranoid nutball, but I don't want to bother my husband with all of my fears. I just can't hold my fear in and desperately want so much for someone to tell me it'll all be ok.
Sorry again for a whiny post! Gosh I will be so glad when everything is definitive. Please help me ease my mind, even if you have to lie;)
Did you ever think you'd type a reassuring post that "it's just Lyme".
Unexplained weight loss (no change in diet, diminished activity)
Enlarged lymph nodes growing larger for approx 2 years
Pain in chest closer to the back paralleling my esophagus (feels like medistinal lymph nodes swelling)
Pain in the bottom of feet especially in the morning with no B 12 deficiency
High blood calcium
Odd frequent cracking of joints (clavicle pops every time I take a deep breath)
Weird grayish color of left hand (comes and goes) (now that I think about it my largest lymph node is my left axiallary...I need to stop thinking)
I was on a medication that has "in rare cases" caused lymphoma (caused extreme bruising, hair loss, and odd posterior chest pain and lymph nodes began) stopped med after 3 months, but side effects continued to worsen
Father died at age 52 of medistinal germ cell cancer
I keep telling myself that my CBC doesn't indicate cancer, I've had a CT and it just reported shotty adenopathy (not really concerning), and every time I get the awful lymph swelling in the chest (now everyday) that I almost certainly can taste mucous excreting in my throat, so that is more indicative of infection. Also, the US of the lymph node that they are removing was said to have texture indicative of infection, not lymphoma.
All of this great news and yet I can't stop my fear! Probably due to all of the "ct scan missed my lymphoma" posts on the web. Oh ye web can be a helpful yet scary place. Also, I have constant sinus drainage and extreme lymphatic pressure. I don't know that those are symptoms of lymphoma, but I don't really go looking for the symptoms either bc it's too scary. I just can't imagine that if it's infection, even Lyme, that my nodes wouldn't wax and wane at all, though.
Ugg, I hope you guys don't think of me as a complete paranoid nutball, but I don't want to bother my husband with all of my fears. I just can't hold my fear in and desperately want so much for someone to tell me it'll all be ok.
Sorry again for a whiny post! Gosh I will be so glad when everything is definitive. Please help me ease my mind, even if you have to lie;)
Did you ever think you'd type a reassuring post that "it's just Lyme".
That is great news indeed! You'll find it's an enormous relief to talk to a doctor who not only listens, but completely understands everything you're going through.
Wonderful news!! Now go buy a lottery ticket -- you're on a winning streak. :)
Let us know how it goes, okay?
Let us know how it goes, okay?
Thank you so much mogogal! I can't telll you how much this forum has meant to me throughout all of this. I wish I had found you all sooner.
Another positive note: My husband's lawyer just asked him how I was doing. My husband said that my health is deteriorating and that I have an upcoming lymphectomy, but we suspect Lyme to be the culprit. The lawyer said that he often sees cases of misdiagnosed Lyme and recommended a doctor. I called the doctor's office today and she is actually a LLMD that takes insurance! Can you believe it?! I was connected to a specialist in her office who laughed when I said that the doctors don't know what to make of the fact that I only tested positive for the P23 Lyme antibody band and have 170+ of the symptoms. She said that she was not surprised that the doctors don't know anything about Lyme disease and treatment, stating that most doctors are clueless. I was able to get an appt. next Monday!!! I can't believe my luck! I hope this is the beginning of treatment and a healthy me! I know I have a long tough road still ahead of me, but at least things don't look as hopeless as they have for a long time now. Good news, good news:)
Another positive note: My husband's lawyer just asked him how I was doing. My husband said that my health is deteriorating and that I have an upcoming lymphectomy, but we suspect Lyme to be the culprit. The lawyer said that he often sees cases of misdiagnosed Lyme and recommended a doctor. I called the doctor's office today and she is actually a LLMD that takes insurance! Can you believe it?! I was connected to a specialist in her office who laughed when I said that the doctors don't know what to make of the fact that I only tested positive for the P23 Lyme antibody band and have 170+ of the symptoms. She said that she was not surprised that the doctors don't know anything about Lyme disease and treatment, stating that most doctors are clueless. I was able to get an appt. next Monday!!! I can't believe my luck! I hope this is the beginning of treatment and a healthy me! I know I have a long tough road still ahead of me, but at least things don't look as hopeless as they have for a long time now. Good news, good news:)
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