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Avatar universal

I have swollen lymph nodes in my groin, upper leg, neck, armpit

Hi, I am 18 years old, male. For 2 years now I have had generalized lymphadenopathy. My groin, neck, armpit, one in my clavicle, but the biggest in my neck and my groin. I am an athlete, and ever since I had the initial sickness (flu like feeling) 2 years ago I have never been the same. My stool has changed, it is flaky, and breaks up whenever it hits water, and I get diarrhea a few times a week. I am super fatigued very often also. I have also developed recurring beaus lines in my toe nails, and they have become thin, which they never were before. My performance in my sport has never been the same since my lymph nodes have swelled, feeling constantly tired while working out, and my performance has leveled out and my improvement is small. My blood values are normal, but I do not feel right, something is wrong in my body. Everyone just acts like it is no big deal, but I want to feel better. The doctor writes me off because I am young and fit and am too young to be sick. I do not feel well. My lymph nodes if anything have stayed the same size, some in my groin have matted together. Please help.
24 Responses
Avatar universal
I also get bad night sweats a few times a week, but not every night. So bad I have to change my clothes in the night.
Avatar universal
My lymph nodes are also very hard but not fixed. Please help!!
1081992 tn?1389907237
COMMUNITY LEADER
It doesn't sound like lymphoma. Maybe instead something that produces granulomas in nodes, like extrapulmonary disseminated tuberculosis, or cat scratch fever.

https://en.wikipedia.org/wiki/Miliary_tuberculosis
http://umm.edu/health/medical/ency/articles/disseminated-tuberculosis

I wouldn't just let it go, something is wrong. You might ultimately need a node biopsy. Before that, a sonogram of the largest neck node might be in order. If the sono shows effacement of node architecture, that should probably prompt a doc to do a biopsy in order to rule out lymphoma - which means you get diagnosed via biopsy and find the real cause.

Tuberculosis doesn't always involve the lungs. It is rare in developed countries (except when associated with reduced immunity from things like HIV), but still possible.
Avatar universal
Here is the back story... I went to Europe when I was 16, came home got really sick, maybe for a month or more. First my groin lymph nodes swelled, and basically worked there way up to my neck. I had extreme fatigue, lightheadedness, burning with urination, headache, neck and groin pain. I am an endurance athlete, and ever since my lymphnodes swelled up, my performance has not been the same. It has affected my digestion also, I rarely defecate solid like I used to. I also bloat easier.  I had mono tests, parasite, bacteria tests all come back normal. Same for my blood, the doctor says, "some high some low, nothing crazy... Youre in the best shape of your life do not worry about it" But I do not feel great all the time like I used to. Some of the nodes in my groin matted together, sometimes they swell bigger, but never smaller. So I am at cross roads right now, and need guidance and where I should take the next step.
1081992 tn?1389907237
COMMUNITY LEADER
There's a methodical way to go about this, if you are very dedicated in guiding your own way to a diagnosis. It might very well take a long time.

First off, if applicable, you'd have to eliminate any possibility of STDs.

Once that is done, then you have to consider: is what you have due to some strange pathogen, or are you having a highly exaggerated immune reaction to something usual?

Btw, the wiki article on disseminated tuberculosis mentioned diarrhea or something similar.

Also btw, matting is said to usually be cancer but can also be from hyper inflammation in the area.

I'll dig up a med video on usual immune problems, as a primer, once you reply.

Avatar universal
Also, I developed Beau's Lines in my toe nails since my nodes swelled, they are recurring.

I have never been tested for STDs, but I was sexually active with my ex girlfriend, and months after our first encounter she had a STD test at a gyno and she came back clean, but I know that doesn't mean I don't have one.

Could a highly exaggerated immune reaction to something usual be constant and affect my athletic performance?

Only on one side of my groin there is matting. In my leg very deep in my muscle I can sometimes find swollen nodes if my muscles are totally relaxed.
1081992 tn?1389907237
COMMUNITY LEADER
For the Beau's lines, you'd probably suspect some systenic cause. Something wracked your system, and continues to do so since the lines recur. Keep a journal and try to correlate what happens days of weeks before the recurrences.

"Could a highly exaggerated immune reaction to something usual be constant and affect my athletic performance?"
Absolutely. E.g., some with the mystery illness known as Chronic Fatigue Syndrome get bad 'exercise intolerance'.

Your nodes are most likely swelling because the immune cells inside proliferate. A lot. When nodes don't go down, that's because they get scarred inside (fibrosis), there are granulomas, or there is a persistent or recurring infection.

I'd try anti-inflammatories to see what happens. I'd focus on food rather than NSAIDS for now. Try turmeric and ginger, e.g . Look up use of black pepper with turmeric.

Or try pre-workout baking soda to see if that helps endurance. Beware of too much, start slowly - else it's a powerful laxative.

Or look up malondoaldehyde as a post workout metabolite that causes problems, and try some recovery tactic. But these things address symptoms, not the mystery cause.

Do you have family with autoimmune diseases or bad allergies?
1 Comments

"malondialdehyde"
Avatar universal
Majority of the time it recurs as soon as the other line is half grown out.

Nobody in my immediate family has any issues. My aunt has lupus, but that's the only disease I know to be in the family. As for allergies none of my family really has them, sometimes mild but nothing out of the ordinary.
1 Comments
Do the lines appear because of any unusual trauma, such as a race? What is the time span between lines?

There are recurring immune conditions such as Periodic Fever Syndromes, but that in general doesn't seem to fit for the lines.
Avatar universal
No they started appearing for no reason (no reason being no trauma or anything like that), maybe a week or two between lines. Since the lines appeared my nails have become very thin and soft compared to what they used to be.

I went to a new doctor yesterday, he ordered about 10 different blood tests, so hopefully something shows and gives me some answers.
1081992 tn?1389907237
COMMUNITY LEADER
"nails have become very thin and soft"
How about your hair? Intestinal problems can result in nutritional deficiencies for nails and hair, such as with zinc.

There is always the difficulty of not being able to tell whether there is a problem wot a pathogen or with the immune system merely acting as if there is some pathogen. When you get the flu, all the symptoms come from the immune reaction, not from the virus itself.

Here is a video about mystery symptoms from the immune system gone awry. It won't necessarily directly apply to you, but might generally apply in principle
https://www.youtube.com/watch?v=Owtt8NO7ahU

Let me know how your tests turn out, make sure you have copies of everything.
Avatar universal
My hair hasnt really changed, maybe curlier but very thick. The weird thing is that my finger nails aren't affected by any of this, its only my toe nails. I thought it might have to do with the inguinal lymph nodes being swollen.
1081992 tn?1389907237
COMMUNITY LEADER
Okay, you make a good point that the nail problem is not systemic. Yet an infection wouldn't likely affect both feet identically, unless you stood or walked in something. So some of your problems are regional, but adenopathy is general...

There are no obvious signs of infection. Some symptoms seem like 'post viral syndrome', wherein immune dysregulation remains after the infection is gone..

Here is a page to look at:
http://www.fpnotebook.com/HemeOnc/ID/LymphdnpthyInThFbrlRtrngTrvlr.htm
"Lymphadenopathy in the Febrile Returning Traveler"



Avatar universal
In my viral blood test, I am positive for having both the CMV and EBV virus in my system. Is it possible that either of these have chronic symptoms?
1081992 tn?1389907237
COMMUNITY LEADER
Nearly everyone has been exposed to EBV. I'm not sure about CMV. Some antibody tests (IgM) indicate a recent infection, some (IgG) show a past exposure.

But yes, chronic EBV is a known condition that can give varying symptoms for years and years. There is probably  controversy about that among clinicians. (There is a very famous controversy about the significance of chronic Lyme.)

Your asking the question shows that you are thinking correctly, though that might not be the actual cause of your problems.
Avatar universal
For the CMV it said it indicated a past infection, and for the EBV it said,"Made by EBV infection, serological scar." Keep in mind that is directly translated from Dutch to English. I am positive for IgG in both, but negative for IgM also in both. I have been reading though that EBV could create long lasting affects of fatigue and mono-like symptoms. The symptoms that I currently have are pretty on par, persistent swollen lymph nodes, night sweats a few times a week (so bad I usually have to change clothes), fatigue and prolonged muscle recovery. Before the sickness I would recover in 1 day maybe 2. Now it takes me 3-5 days to recover, but I haven't felt 100% in years since my nodes swelled up. So I'm recovering to a decent feeling, definitely not 100%. I remember with the initial month of feeling sick, I would get bloated really easily, could barely eat, fever and cold sweats. Now its just the fatigue, swollen nodes, prolonged recovery, night sweats, I'll occasionally get achy joints.
Avatar universal
Also accompanied with this is that I easily become anemic. My hematocrit and hemoglobin levels drop constantly, regardless if I am taking a iron supplement or not. Also my platelet levels are sometimes off.
1081992 tn?1389907237
COMMUNITY LEADER
You've probably heard of Chronic Fatigue Syndrome. No one really knows what it is, and that results in its having several names. It's probably several diseases. Chronic EBV might be one type of CFS. But the F in CFS isn't really fatigue per se, it's more like feeling poisoned. For some, anyway.

More than a few people with CFS say that they very much regret having pushed themselves physically to where they dug themselves in much deeper and can't get out. Some become bedbound.

Achy joints can have an immune cause, as anyone who's had the flu can attest. But that, along with tiredness etc are non-specific symptoms that won't be taken too seriously by a doc unless accompanied by something worse.

Lowering of more than one blood cell line might be cause for alarm about the marrow, except that a virus in the bloodstream can do that by destroying cells. Or a virus might attach to a platelet and provoke the immune system to destroy the platelet.

Poor mineral absorption can result from an inflamed gut. A leaky gut (aka increased intestinal permeability) can let (usually blocked) proteins and larger peptides into the blood that can wreak havoc by prompting an immune response, somewhat like being allergic (actually the term is "sensitive") to foods - but only while the leaky gut lasts.

You can see why it might take years to get diagnosed. Self-experimentation can give clues, but should always be done prudently and never with the aim of toughing it out.
Avatar universal
Looking at CFS, a lot of the symptoms relate to mine. I read that also its onset by stress, emotional trauma, and some illnesses like glandular fever. When I was in Europe the coaches there just tore me apart emotionally because I changed teams, and it was political and they just railed me for it. So I was stressed, and I fell while racing and got pretty beat up, and then came home and got really sick, and was fatigued for quite some time. I also read that for a lot of people CFS comes in waves. For example I went to Europe again last year for some races, and felt pretty good, not 100% but not terrible, then when I came back I was just physically destroyed and the kids that I was beating were putting minutes into me and I felt like that for months before I started to feel decent again.
Avatar universal
http://www.nealgorman.com/2013/06/running-with-cytomegalovirus.html?m=1


Tell me what you think of this. It's a possibility.
1081992 tn?1389907237
COMMUNITY LEADER
Stress can be very much involved in many conditions, both for weakened immunity but also chronic overactive immunity CFS is certainly possible. Many docs for many years insisted it didn't exist. The newest naming was done to say that it's real and highlights what they for now consider a central feature: "systemic exertion intolerance disease (SEID)".

re: the article, can you write a summary in a few sentences?

Btw, keep in mind that there exists chronic infection, but also there is post-viral syndrome.
Avatar universal
The article talks about how he was feeling great then slowly started becoming worse, and turns out CMV was taking a major affect on him because he had a compromised immune system due to overtraining. Just an interesting read. Which I am not sure that would apply to me, since neither CMV or EBV are currently active in my body.

Which leads me to CFS or SEID, which would make sense, because I do a really hard block of racing maybe 2-4 weeks, and then usually am down for 2-3 months after that, not refreshed by sleep, seems like my muscles didn't even take in that recovery time. When I do smaller volume, usually less than an hour I don't feel that affected, its usually after very hard racing that I get down for months. I also have heart palpitations on and off, sometimes for a week or more, and it will go away and come back. Also my heart rate is really high at low intensity. So maybe I could have an acute case of CFS or SEID
1081992 tn?1389907237
COMMUNITY LEADER
Judging virus titres by antibody testing is not necessarily cut and dried, you never know.

I'd worry about having a "crash" post race and not getting out of it... especially if rebound is taking longer and longer each time.

A researcher named Alan Light has studied the difference in muscle in CFS and fibromylagia. It is measurable.

Did you have an EKG to rule out anything serious, such as viral myocarditis? E.g., many school districts won't anymore allow a student to return to a  sport unless they have an EKG.
Avatar universal
Hugely with me is not recovering and feeling fresh after a nights sleep. Yes, I'm not sure how much longer I can compete with this. The distance is only getting higher and I'm staying the same or with worsening recovery. Also the reality is I feel used to feeling not well because it has been going on for quite some time now. Onset CFS by hard exercise keeping me down for months seems quite possible, and I've been reading about high level high endurance athletes with CFS and it seems likely. It talks about about sleeping a ton in the early stages, and I was sleep 11+ hours daily and not feeling refreshed the months after my initial sickness.

Never had an EKG. Just started noticing it a few months ago when I began taking my morning heart rate and using a heart rate monitor during exercise. I notice it flutters in the morning when I breath in, and is high at low effort while exercising.
1081992 tn?1389907237
COMMUNITY LEADER
Let's see...

I'd try the bicarb, plus anti-inflammatories and anti-oxidants, but you might still be tempting fate and create a 10x worse situation by continuing running. Then again, you might not. That's how it is.

The top 6 CFS MDs have 6 entirely different theories as to what it is. The cardiac one is Cheney, I think.

"I notice it flutters in the morning when I breath in, and is high at low effort while exercising."
The 2nd or 3rd leading cause of sudden cardiac death among young athletes is VFib from myocarditis. On an EKG, I'd look for heart block, like LBBB.
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