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Main Forums => Living With HIV => Topic started by: HIV? poz about being neg on June 13, 2008, 03:46:25 am

Title: Lymph Nodes
Post by: HIV? poz about being neg on June 13, 2008, 03:46:25 am
OK so I have been HIV positive for 17 months.
My lymph nodes have consistently been swollen throughout.
 My HIV specialist has sent me for an ultra sound. The specialists has said to be that it is uncommon to have the lymph nodes stay enlarged for such a long period of time?

I'm not on meds. Anyone else have some info on this? The web sites I have looked at say that the lymph nodes are usually only swollen during the asymptomatic period or in most cases up to three months or befor your going to get very sick?
Title: Re: Lymph Nodes
Post by: John2038 on June 13, 2008, 05:22:46 am
It common say my doc as long as they not growth and become fix and hard.
The sonar shows in  most case "fatty lymph nodes" which is a reaction to the infection.

Do not worry  same here 

John
Title: Re: Lymph Nodes
Post by: Central79 on June 13, 2008, 05:44:35 am
I've still got lymphadenopathy 2.5 years after being infected. It's very common to have them stay swollen until you start medication and your viral load is suppressed. It's just your body responding to the infection and producing cells and antibodies to fight it. It's nothing to worry about unless, like John said, they become fixed and hard.

M.
Title: Re: Lymph Nodes
Post by: HIV? poz about being neg on June 13, 2008, 11:44:26 am
ok thanks. so the ultra sound pretty much a waste of time then...
Title: Re: Lymph Nodes
Post by: Ann on June 13, 2008, 03:35:15 pm
HPABN,

Nobody can diagnose what's going on with your lymph nodes over the internet.

Your doctor is the one who saw you in person and if he thought they warranted further investigation, then perhaps it's the best thing to do. Even if it turns out to be nothing more than run-of-the-mill hiv-related lymphadenopathy, it's far better to be safe than sorry.

Keep that ultrasound appointment!

Ann
Title: Re: Lymph Nodes
Post by: John2038 on June 13, 2008, 05:42:53 pm
I was willing to say the same as Ann !

Important: While a scan is scanning the whole body, the sonar is only taking images in the targeted area. In others words, if the doc doing the sonar is not carefully investigating your neck, it might miss lymphs nodes. It is important to insist to get all lymphs node checked.

FYI, this is how look a fatty lymph node:

(http://img263.imageshack.us/img263/8993/fattylymphme0.jpg)

When a lymph node is malignant, it burn the fat.
The fat in a lymph node is not correlated to the body fat.

Normally, when a sonar is requested, a second one need to be done 1 month after, to ensure the lymphs nodes are "benign" (well, for a neg, it might means HIV..).
Title: Re: Lymph Nodes
Post by: Tim Horn on June 14, 2008, 09:16:59 am
John:

I'm sorry, but this is the biggest crock of non-information I've ever read in these Forums.

Do all of us a favor and stop handing out advice regarding subjects you seemingly know NOTHING about.

Edited to add: Actually, consider yourself warned. Your misinformation has been teetering on "advice" for quite some time now and I think it's time for you to reel it in -- starting now.

Tim Horn 

Title: Re: Lymph Nodes
Post by: John2038 on June 14, 2008, 10:41:42 am
Hmm I doutt I'm wrong , the pix above being mine and having  reported  what the ID doc has said about  swollen lymps nodes

So what's wrong? 
Title: Re: Lymph Nodes
Post by: Tim Horn on June 14, 2008, 12:01:03 pm
You've been warned and now you're hijacking this thread.

Your "understanding" of the structural and metabolic changes that occur in lymphadenopathy is incorrect at best. I encourage you to print out what you've written above, discuss it with your I.D. specialist, and stop passing along misinformation in the Forums.

Respond again and you're looking at a seven-day time out.

Tim Horn
Title: Re: Lymph Nodes
Post by: HIV? poz about being neg on June 25, 2008, 01:05:23 am
Ok so now the Specialist is sending me for a CAT Scan now I'm really getting freaked out and talking about doing a biopsy once the Cat Scan results come back.
Title: Re: Lymph Nodes
Post by: John2038 on June 25, 2008, 02:18:09 am
Hi,

got a CAT and a PET scan done + bone marrow biopsy + sonar, and no malignant cell were find.
Due to a lymph node bigger than 2cm, I asked to get a biopsy done, but 3 docs give me the same answers:
You don't have lymphoma. Got instead various comment such as "If so, you will have symptoms such as weight loss, fever, night sweat, bounce in some FBC counts etc."
I said "But must start with swollen lymph nodes greater than 2cm no?"
The answer was: "Never see a lymphoma with such CD4"

I am not telling you of course to not do this biopsy !! Neither has my docs said that there are 0 possibility to have a lymphoma above 200 CD4 (but they said "very unlikely").
I am only telling you that it is not because we ask you to have a scan done, that you are having a lymphoma, as in my case (fingers crossed)

Keep the Faith !

John
Title: Re: Lymph Nodes
Post by: bocker3 on June 25, 2008, 08:09:36 am
I am not telling you of course to not do this biopsy !! Neither has my docs said that there are 0 possibility to have a lymphoma above 200 CD4 (but they said "very unlikely").

First off John -- this is a CRAZY thing to say.  People get lymphoma's all the time who are HIV- (and presumably have normal CD4 counts).  come make these sort of statements after you've gotten your medical degree please.  You may mean to be helpful and comforting, but you really aren't doing either here.

Now -- back tot he poster -- my advice is to take a deep breath and get your tests done.  The whole point of the testing is to determine what is wrong.  If the tests are negative, great --- if they do show something, you can face that then, but at least you'll know and can attack the problem in the proper way.  Your fear is likely based on assuming the worst possible outcome -- try to take things step by step.  First go get the tests -- worry about the results if and when needed.  Easier said then done, I know -- but give it a shot.
When will you be having the tests?  Please do keep us posted.
My thoughts will be with you.

Hugs,
Mike
Title: Re: Lymph Nodes
Post by: Andy Velez on June 25, 2008, 10:54:02 am
I agree that you ought to move ahead, take some deep and slow breaths and get the tests done. Hopefully they will give you some solid information including possibly good news.

Mike, John is actually encouraging him to do the tests but I will admit his syntax is not the clearest. Let's not get sidetracked here and keep our focus on the person who began this thread and his needs. 
Title: Re: Lymph Nodes
Post by: Winiroo on June 25, 2008, 04:00:36 pm
OK so I have been HIV positive for 17 months.
My lymph nodes have consistently been swollen throughout.
 My HIV specialist has sent me for an ultra sound. The specialists has said to be that it is uncommon to have the lymph nodes stay enlarged for such a long period of time?

I'm not on meds. Anyone else have some info on this? The web sites I have looked at say that the lymph nodes are usually only swollen during the asymptomatic period or in most cases up to three months or befor your going to get very sick?


I've been positive considerably longer than you but my lymph glands have been enlarged consistently for years.
I had one in my neck removed because it continued to get larger to the point where it was obvious visually.
It was not cancerous it just got big. The ones in my arm pits have been the size of peanut MnM's for years. They have been needle biopsied numerous times with nothing showing up on the biopsy.

I thought that swollen glands was a norm with most of us.
Title: Re: Lymph Nodes
Post by: ANGEL42 on June 26, 2008, 08:40:04 pm
As Someone who has been battling HIV related Hodgkins Lymphoma now for over two years ...please move forward with Cat scans and Preferably a PET ct.
I waited to long and ended up Stage IV. By the way my T`s were fine and my VL was below 50,000....We can`t ignore swollen lymphnodes...Always talk with your doctor and be Pro Active.

My prayers and thoughts are with you..
ANGEL
Title: Re: Lymph Nodes
Post by: HIV? poz about being neg on December 15, 2008, 03:59:57 am
WOW ok so had the CatScan done and the DR says that the lymph nodes are somewhat large but that they are normal for a person who is infected with HIV and that a follow up will be done in six months time.. And basically to watch if the lymph nodes become fixed and hardened?
Title: Re: Lymph Nodes
Post by: GodSon83 on December 15, 2008, 06:58:01 pm
 ???
I have 3 lymphomas right now, one in each part of my neck, and one more in the back part, down my head. But ther are like round pearls, from 1 cm each one.
My doctor said itīs ok, itīs normal from someone with HIV, now iīm feeling good, so, there isnīt reasons to worry about it.

Title: Re: Lymph Nodes
Post by: tag_man08 on December 15, 2008, 11:10:50 pm
I only had one pop up on my neck....it was pretty much there the last 15months since my diagnosis.....and after i started the drugs....it disappeared in less than a week...

It really became one of my reasons to start therapy....i didn't want anything else to come up along with the HIV....everyone reacts differently to HIV....its a ever changing disease that we have to constantly watch for changes....I had hoped my lymph node would go down....but it never did....it was always on my mind...I've become a strong believer behind starting therapy sooner than advised.  I only wish I had the courage during my first months on therapy to start....but I was still in some form of denial.
Title: Re: Lymph Nodes
Post by: LBpozguy on December 17, 2008, 05:07:13 pm
Hey Guys:

don't know if I should be starting a new thread or not.... but I just went to a surgen today because of a Lymph Node on the back of my neck. I got my HIV Diagnosis in Sept 08 but the node has been slightly enlarged for several years. I had an HIV test in Feb 08 that was Neg so I am pretty sure that the node was not enlarged because of hiv. However, in the last few months I noticed that it has gotten larger and is causing some discomfort. So I went to the surgen today, and he told me that he can remove and will remove it on an outpatient basis. Meaning go in the morning and then leave back home in a few hours. He didn't seem to feel that it was cancerous but said it would still be biopsied (sp). So it looks like I will be having it taken out before Xmas.  But now I am a little worried. Everyone is talking about Pet scans and CAT scans.... should my doctor being doing that before he removes it?

HIV? poz about being neg  Sorry if it seems I am hijacking your thread. I really am not tryong to do that. Just coping with the same thing you are right now!!

LB
Title: Re: Lymph Nodes
Post by: AtomicA on December 17, 2008, 05:19:26 pm
when I had seroconversion illness practically every lymph node in my body quintupled in size. the one on the left side of my neck and in all the ones in my groin stayed huge to the point they were visible through my skin for the next year. It wasn't until I started meds that they subsided, and they did so within a couple of weeks. now you can't even feel the ones in my groin and you have to press pretty hard to feel the one on the left side of my neck.

after being a constant, worrying reminder of what was going on in my body for a year, seeing them shrivel up in two weeks was almost a non-event.

my doc showed me on on the right side of his neck that is permanently enlarged because of a series of strep infections as a kid.

now the only time mine swell up is around exam season when I get less than 5 hours of sleep a night. They're like my little stress barometer.

HIV? poz about being neg: you my friend, are not alone!
Title: Re: Lymph Nodes
Post by: YaKaMein on December 17, 2008, 05:34:50 pm
H?PABneg, am glad you sought medical attention and have received very encouraging news. I encourage us all to always seek medical advice from our health care providers, be persistent, ask questions, and feel free to seek second or third opinions ... enlarged lymph nodes are common. Once discovered, try not to worry, and make sure your physician or care team is aware and monitors them. Only then can you make the best decisions about the next steps to take.