RA and Swollen Neck Glands

[tcregon]

Has anyone else ever experienced swollen glands (lymphs) in the neck area having any of the rheumatic diseases?  I have over the years always had on and off swollen glands in my neck usually one side or the other lasting a week or so and very painful at times.  Before I realized I had this disease I would on occassion get a cold sore on my lip after these glands swelled up and contribute it to that but sometimes it will get sore and swollen and that is all I get.  I have recently read a few articles stating many people do get swollen neck glands with rheumatic diseases and I wonder now if that is what I was getting over the few years before I was diagnosed with RA.  Just curious if anyone experiences this type of effect.  It is really painful sometimes and others just a nuisance.  I'm so grateful for this group as I have learned so much from it.  Three months on mino now and feeling so much better – so far.  I hope I keep moving forward in every sense of the words.

[carries]

Hi! Yes, I get swollen neck glands as well. I often hear crunches too! When I was on pred that helped. I just started LDN and that seems to help greatly. I am only on day two…but have noticed less and less pain. I just went and got a massage and had her focus on knots in my neck and that helped as well.

[tcregon]

Carrie:

Thanks for the reply.  Are your swollen glands related to the disease itself?  Sometimes like now it has been so painful I wonder if I have a tooth problem, ear ache or something else going on besides not being able to touch my neck in the gland area and other times it is just a pain to have but it was just recently I read swollen glands can be related to the disease itself.  At least I now have an idea of why out of the blue my glands will just swell up and sometimes the flu or cold sores will follow but most the time they just swell up for a week or so and go away.  So learning more each day here on this site.

[Donna RA]

Hi,

I get that symptom too.  I always thought it was related to RA, until I got tested for Lyme disease.  Swollen Lymph nodes on the neck are also a symptom of Lyme.  Have you been tested for Lyme?  Might be worth looking into.

Donna RA and Lyme

[tcregon]

Thanks so much for your response.  I have been tested every way imaginable for Lyme except thru Igenex.  I know I need to start that process since coming to this site as I live on a wildlife preserve and LYME is a big problem here.  I used to spend so much time out there and come home with 15 plus ticks; now I run from the woods in spring summer and fall so it is something I absolutely need to do.  My hubby had it and my dogs had it but my rheumy swears he did the right testing and I do not have it.  Now I know different.  This is so painful I hope it goes away soon.  Trish

[Michele]

Trish,

I whole-heartedly agree with Donna's advice.

My first rheumy swore up and down he did the right lyme testing, too. That sure wasn't the case. He was a J. Hopkins doc. I went for second and third rheumatological opinions and they found a couple bands of lyme positive, but didn't call it lyme. They brushed me off and said they didn't know what was wrong. I was left in limbo for a long time and this board saved me. With rbf advice, I kept researching and digging.

Did your doctor check for coinfections?

Coinfections are often a part of the “Lyme” disease complex. Babesia WA1 is the major player in my case. It takes an extremely skilled Lyme physician to know what labs and what tests to do.

I now see a rheumy in Fairfax, VA who is also a LLMD. If you are in nearby MD, you could consider this option. I don't have a LLMD list for this area, but you can request one from this board.

Hindsight 20/20; locate an LLMD near you and get references. Trust and follow your gut instincts. Having swollen glands is a huge red flag.

http://www.ilads.org/

I paid for the IgeneX tests before finding an LLMD…I wish I'd found the LLMD first. In the end, I would have saved a lot of time, money and misery.

I'm glad you feel better on Mino! 🙂
You are asking the right questions!

Good luck!

Michele

[Michele]

Hi again,

In doing some reading about Babesia, I found this resource that has a list of reasons lyme disease doesn't show up as “positive.”

http://www.mentalhealthandillness.com/seronegativelymedisease.html

Michele

[Valsmum]

I too get swollen glands, especially after starting mino. My neck and my underarms were both swollen and sometimes I herx so badly I have to do a washout period of a week or so. They filter out all the bad stuff so it makes since if we have an infection they would be swollen. After reading through many of the posts here at TRF I too am getting a Lyme Test next week, I called igenex and they told me to have 10 days without antibiotics before the day of the test.  I can't imagine myself having Lyme because unlike you I haven't seen a tick in years, but when I take minocycline at just 50 mg once a week my knees swell up badly and my neck hurts too and I've heard that both those symptoms could be a lyme, so it seems prudent to check it out. Well  I hope it all goes well, take care.

 

[tcregon]

Michele:

Thanks for the info.  I've only held off doing this as I am learning as I go and it seems all the LLMD's don't take insurance.  Unfortunately, it's almost impossible for me to go through all the treatments required without getting assistance through insurance.  Please PM me your doctor as I drive to VA to find a rheumy that would help me with AP anyway.  Thanks everyone for the information and feedback it means so much when people are so sick and looking for answers.

 

[Michele]

tcregon,

I certainly understand the dilemma you face with LLMDs being typically out-of-network doctors.

I've sent you a PM. I think once this board gets moved over you could request a more complete list of doctors for your area.

National Capital Lyme may also be a resource for you.
http://www.natcaplyme.org/index.php

Take care!
Michele

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