Lymph problem update

[leilajax]

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!

[mojogal]

We are here for you to vent to. I was kicked out of one of my doctors offices but she blamed me because I wanted answers and she couldn't just say I don't know what is going on. All my blood tests were abnormal by that time.

We get treated badly and its unfair. I lost 40 lbs during my first month of being very sick and then I put on lots of weight due to the Lyme affecting my thyroid. I am ok now as far as weight goes.

I would wait to have the lymphectemy until after seeing the LLMD since swollen glands are part of Bartonella.. I wish you the best and feel free to vent to us whenever you need to.

[leilajax]

Thank you all so much for the encouragement and reassurance!  I get so scared lately that I'm just going downhill rapidly... Yet slowly.  Does that make sense?  I'm too sick for regular doctors to help me, but not sick enough to be taken seriously by the ER.  And forget the specialists, it's a month to wait for an appt, then a month to wait for tests, and so in and so on.  I can't figure out why this nightmare won't end already.  Blah, sorry I am literally becoming a severely depressed mess over all of this.
I asked my regular doctor if he would go ahead and do the Igenex testing for me, but he said that he wants me to keep doing everything through Hopkins stating that I shouldn't spread testing between too many doctors.  He really doesn't get that while I have seen a clinical intern at Hopkins that doesn't automatically make him my new GP.  Ugg!  He just thanked me for the update and then asked me to let him know what Hopkins discovered.  Basically, he dropped me?  Can doctors do that?  "I don't know what's wrong with you?  Good luck with that!  By the way thanks for dumping a lot of money at my feet for the past 10 years.  Have a nice day!"  What the what???
Again there's the LLMD on may 1st and my lymphectomy through Hopkins whenever they schedule that.  How long does it take to get Igenex lab result?  I'm not sure if I've admitted to you guys yet or not but I'm down to 93 lbs (30 lbs without a change in diet and I don't have the strength to do anything more than stretch).  Why don't the doctors think this is as serious as I do?
Omg, so sorry to vent so much!

[wonko]

I also had lymph node pain and cystic breasts for years before my Lyme dx.  I get a deep massage about once a month that helps with my lymph problems.  If I don't go, my body gives me a painful reminder!

[Ricobord]

I can't remember if you've already been tested at IGeneX or not.  If not, perhaps this sympathetic doctor would be willing to sign the IGeneX authorization form?

[Ricobord]

Good for that doc for suggesting Lyme!  I was also tested for sarcoidosis in my neurology work up. It's yet another condition Lyme can mimic.

Generally, a PCR test (looks for DNA) is done on excised tissue to look for a specific bacteria.  You'll want to insist to whatever doctor removes your lymph node that you want a PCR on it for Lyme.

[mojogal]

I agree with Jackie. This was one of my first symptoms. Every lymph node was swollen in my body.

I started treatment last year and although some are still swollen, it has improved a lot.