posted
Went to see LLMD who said to get biopsy of shotty looking cubital (elbow) node and have had waxing and waning nodes in other spots. Bloodwork is fine and I have felt really good lately. GP is testing inflammation to see if that's still high but I still have to get a lymph node biopsy in 2 weeks and I am scared. I'm 42 and a single mom of two eeking by. Does anyone have encouragement or prayers they could offer. I would be so grateful.
Posts: 96 | From Missouri | Registered: Oct 2010
| IP: Logged |
BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
No, he doesn't usually do the specific tests, not sure why not. I suspect it though from what I 've read. The rifampin kicked my butt.
Posts: 96 | From Missouri | Registered: Oct 2010
| IP: Logged |
posted
Tutu really appreciate the prayers and reading about bartonella. Wonder if there are reliable ways to test. Hmmm.
Posts: 96 | From Missouri | Registered: Oct 2010
| IP: Logged |
posted
Yep. My thinking and getting the words out has been just as big a challenge as the pain. I'm wondering what to do now. Start taking a flolaxin drug to kill the Bart...
Posts: 96 | From Missouri | Registered: Oct 2010
| IP: Logged |
lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
Rule out everything else (ex. Lymphoma) just to be sure. However, I bet those lymph nodes are just reactive.
My husband had the same problem. The Drs thought he must have been eaten up with cancer and kept trying to rule out lymphoma and other cancers.
At one point he had a fine needle biopsy of the node in his groin. Later, he had the node completely removed to be tested.
He didn't have cancer. His lymph nodes were reacting to infection. Once the infection was treated, the lymph nodes went back to normal.
posted
You should make sure to test for bartonela, proto, parasites.
My prayers are with you. I was told years ago that they thought I had lymphoma. Then my GP gave me like 8 anti biotics (monotherapy) rotated for like 8 months. And then the swollen lymph nodes went away.
Posts: 697 | From CA | Registered: Dec 2011
| IP: Logged |
lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
I agree its probably bart
Red root tea helps sx of pain in nodes but wont tx infection
Also...i had a node removed in july and it was one of the easiest things i have been thru recently
The prep was a little uncomfortable...but the scar etc was not a problem
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
| IP: Logged |
posted
I sincerely appreciate the prayers and examples here. I think the chances are low but I've let this get to me too much. You all are wonderful and I pray God's healing in your lives.
Posts: 96 | From Missouri | Registered: Oct 2010
| IP: Logged |
posted
Well, I just got back from the surgeon's office. He felt all my nodes I was concerned about and said that he didn't feel anything he was concerned about. He asked if I was told to get a biopsy and I said my GP said to go to the surgeon because I may need one. If the general surgeon, who presumably should know more on this than the GP and the LLMD sends you away with a clean bill of health and didn't press for a biopsy, can I trust that all is okay? I'm not used to all this. He agreed with me that it was probably from the tick borne infection.
Posts: 96 | From Missouri | Registered: Oct 2010
| IP: Logged |
surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
Galaxy labs has a good test for Bart (if there is a good test) but must be off antibiotics for 4 weeks, and it's 3 separate blood draws in 1 week.
*whew* I understand your anxiety, I have my own around medical issues and procedures.
I can preach it better than I can do it, but if you get the lymph node testing (and it sounds like they will make you insist on it)
then you will have peace of mind when the results come back clear.
I never really had lymph issues w/ my Bart except a nodule that came up on my neck that wouldn't leave- my LLMD
at the time said it was due to toxin build up- I started doing a binder of cholystyramine powder, some homeopathic drainage remedies,
it did go away and hasn't come back. Sometimes when on an antibiotic that targets Bart, I will have nodule type soreness come up on my scalp-
Then I do more for detox and they go away. So you are not treating anything now? You said you feel good....
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
| IP: Logged |
posted
No, I am on Cipro and Doxy right now. I have a call into my doc to ask if she thinks I need to go ahead and get a biopsy regardless of what the surgeon said, but the surgeon would have a better sense of whether this feels suspicious enough to biopsy right?
Posts: 96 | From Missouri | Registered: Oct 2010
| IP: Logged |
surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
So, are these nodules new, coming up since you've been on treatment? (The one on my neck came up while on treatment.)
Yes, the surgeon has had his share of experiences, I'm sure, but what can YOU live with? Trying to detox better and see if they go away?
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
| IP: Logged |
posted
Yeah, I just don't know. I just seem to get lumpier and lumpier everywhere in general. My employer starts a health savings program next year that's basically just catastrophic coverage so it might be better to get the biopsy now just to make sure. I'll keep everyone posted and appreciate the replies.
Posts: 96 | From Missouri | Registered: Oct 2010
| IP: Logged |
Jamers
Frequent Contributor (1K+ posts)
Member # 28016
posted
Any muscle twitching or sore/swollen throat involved? I'm experiencing these along with lymph nodes. When I first got ill (4 years ago) my lymph nodes were so bad around my neck and throat. Pretty sure it was Bartonella
-------------------- Diagnosed Pos. Lyme Nov. 17, 2010, Igx. Pos. Babesia Duncani March 2011, Igx. Clinical diagnosis for Bartonella Posts: 1127 | From North Carolina | Registered: Sep 2010
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[group hug]](graemlins/grouphug.gif)
Printer-friendly view of this topic