What Do You Think (Please Would Like Response From People Whom Actually Have Disease)

6/14 Now for over 2.5 weeks I have had swollen glands and it been getting worse. I had first thought was just getting sick and waited a week before going to the doctor.
During that Week Other Symptoms:
Shortness Breathe~ Loss Appetite ~ Swollen Glands ~ Sore Throat (at time) ~  Excess mucus ~ Major Fatigue
6/21 Once went to doctor: noted I had a Low Grad Fever [ Tested for Step - Negative ]
Was given a ZPack and noted: Fever ~ Acute Pharyngitis ~ Lymphadenopathy ~ Nasal Logiciel ~ Acute Sinusitis
Well finished the Zpack and getting worse.
Went to Doctors again (Getting Dizziness and Feeling Like Fainting / No Sore Throat / Back Pain / Chest Pain / Very Fatigue)
6/27 Once at doctors Again: Tested for Mono [Negative] Blood was taken / Given another round of antibiotic 2xday for 10 days.
(During that time more Shortness of Breathe , Notice Now Weight Loss, More Feeling of Faintness, A little itchy)
6/29 Just got call from doctor and blood test was said to be all normal ( And puzzled that I was still not feeling better, was told to come back in on Friday if I was still not feeling better.) Just having that conversation, very short cause me to catch breath and cough.
Just got another call again from doctor putting me on Steroid pack and inhaler. And to come in on Tuesday if not feeling better.

Does this sound like anything any of you have gone threw with Lymphoma / Leukemia ?

{Medical History:  Mother passed 7 year ago from Lymphoma }

[RedRed76]

Ok so the medication the doctor has given me is:
Zema-Pak  - 6 Day Pack
Proventil HFA INH (6.7gm)

The antibiotic is Amox-Clav 875 mg ( Twice a Day/10 Days)

Thank You

[Ken_PA]

Hi. Yes, all your symptoms could theoretically be from lymphoma, but the big difference is that the weight loss and fatigue arrives during more advanced lymphoma, which typically  takes a year or more to develop from the time when you first notice swollen nodes. So does any direct lung involvement or ascites.

But everything with you apparently developed very quickly. So it sure seems much more like a bad respiratory tract infection than any type of lymphoma.

So, just going through the things that you likely already know: your doc suspected a bacterial infection, because of the presence of fever, and also especially if you had any green colored mucous. But when you didn't get better from the initial antibiotic, it was time to suspect a virus that also gives fever, such as the Mono (Epstein Barr). When that test was negative, then next to try a different antibiotic, but for a longer period.

How much weight loss? If it's mainly water weight, then reduced blood volume could be the cause of the dizziness. Drinking lots of water might help with that. Is your blood pressure okay? Also, infections can cause low BP, such as through the action of histamine (which also can cause itching).

By 'blood test' do you mean a CBC? If your cell counts are normal yet the infection persists, then that is unusual so it could be some rare mystery infection or maybe you have a very reactive immune system which is revved up even after the infection has been defeated. In that case, it makes sense to try the albuterol and steroid to relieve the symptoms, and the dexamethasone can suppress your immune response depending on the dose. Sometimes the immune reaction becomes the big problem.

Sorry about your mom. You naturally will have a worry about lymphoma, but I'd suggest that you look into whether that particular type of lymphoma is associated with heredity or not. That might set your mind at ease through the years.

If your name here means you were born in 1976 then pneumonia is not as alarming a mortal danger as for someone much older. But passing out and banging your head is a danger at any age.

Good luck. It would be interesting to hear back how you make out. But I wouldn't be worried about lymphoma.

[Mochadelicious]

Hi RedRed76,
Sorry to hear you are going through such a rough time.  I have lymphoma but I'm not a doctor so I'll help you the best I can...

My lymphoma was rather silent and the only telltale sign was a lump.  I didn't have any fevers, night sweats or weight loss.  That being said, those three symptoms are associated with lymphoma, especially if it has spread past your lymphatics.  People with lymphoma present with "A" symptoms, which is basically none of the three symptoms mentioned above, or "B" symptoms which is some or all of the symptoms named above.  Itching is also a common symptom I hear of, but not part of the "B" symptoms if that makes any sense.  So, I was diagnosed with lymphoma stage 3, grade 3A.  The "A" standing for no symptoms present at diagnosis.  

Some of your symptoms such as swollen glands, fever, weight loss and fatigue could be associated with lymphoma, but the other symptoms such as sore throat, shortness of breath and dizziness doesn't quite fit the diagnosis in my opinion.  The only sure way of knowing if it's lymphoma is to do a biopsy of one of your swollen nodes.  Blood tests can be normal even if you do have lymphoma (which is what happened to me) because it had not spread past my lymphatics and into my bloodstream.  If you don't get any answers soon you might request a biopsy just to rule lymphoma out.  

Good luck and keep us posted on what you find out.

[Ken_PA]

As far as whether a lymphoma can progress very rapidly, such as in a month or so? I don't know much about that. My father had Mantle Cell Lymphoma, which is among the most aggressive types. The average life expectancy for MCL is three years. But he also had the worst subtype, called Blastic, and so he only lasted two years.

So what could develop really quickly, as in a month or so? There are some types of lymphoma that don't start with a lymph node that you can see. I would just be guessing, and just read a little now. I'd suppose the best course would be to call and find out exactly your mother's diagnosis. That might help in convincing a doctor to do a scan.

There is the rare and aggressive "Mediastinal large B-cell lymphoma", which is said to be most common in women between the ages of 30 and 40. (The mediastinum is roughly the inside of the chest.)  It would start in the chest and then later might result in visible lymph nodes in the neck etc becoming enlarged.

Notice the list of the common symptoms:
http://www.lymphomation.org/type-PMBL.htm



If you like, I'll help you to try and track down more info - especially if you get your mom's diagnosis - which hopefully only requires a call to her doc or even a look at the death certificate.

The odds are still that you have only an infection, but it can't hurt to be aware of the other possibility.

Important: did you get an LDH blood test? That is inexpensive and it should be easy to convince your doc to order it, just by calling them. It is typically used as one of the first tests in diagnosing cancer, and it has to do with a blood substance that rises when there is rapid turnover of cells.

Also, do you have any autoimmune conditions like Lupus or Raynaud's, etc?

[RedRed76]

My mothers death of Lymphoma I know little about, other then she had some issue with legs then less then a month she had pasted. (This was over 7 years ago). I have no one to contact to find out more information about unfortunate to say.

I have lost a another pound since yesterday to today. :( I was about 136 when went to doctors (6/14-27) wasn't til this week started loosing weight I am now down to 132. I drink tons of water have 20 oz cup that drink min of 4 times a day. I am actually getting Ensure today. (Funny cause I has had a hell of time losing weight after having daughter.)

My BP has always been low.

The doctor gave me CBC and CMP.

I no longer have a sore throat, that stopped about week ago. ( I did have in the beginning, and want to be in-depth with everything.) No more fever as well. Also never had green mucus.

NO, never heard of <> Did notice from the symptoms that "painless lymph nodes ". I do not have painless lymph nodes. They actually are really painful as day progresses, mostly night and pain med's don't have. And yes I am 35.

I have appreciated everyones help, and no matter what I will keep posting to whats going on and find out..

[RedRed76]

Also a little about me and blood test.

I had very early signs of being pregnant I went to doctors they gave me a blood test (which i have been told are 100%) and ultrasound.
Both came back Negative.
Another 1.5 week went by did another blood test more symptoms and that time it came up Positive.(She is now 20 months. So much for 100%)

So I believe my body is really sensitive to things going on.

Also more of my mother's sickness I was told she was check in, then started to have kidney failure and was on dialicious, then week after went into a coma then passed a few days after. (all in months time) So I am not sure what the death certificate will say if I do end up ordering.

[Ken_PA]

regarding weight loss: is it because you can't eat? no appetite? stomach pain? or because you are eating normally but still mysteriously lose weight?

painful lymph nodes usually (but not always) mean infection. That's because they swell up as they produce lots more immune cells inside, and therefore that stretches the covering of the node - which is called the capsule. The stretching causes pain.

Is there redness around the lymph nodes? That also argues toward infection and against cancer.

Any easy bruising lately?

Sore throat argues toward infection, not lymphoma, as Mocha was saying. Lack of green mucous argues toward virus rather than bacteria. It's also always possible to have a fungus or parasite infection, but less likely.

Not all antibiotics work against every bacteria anyway.

At this point I would ask the doc to fax an order for an LDH test because your mom passed away due to lymphoma. That test might help to rule out cancer. (The problem is that tests which can indicate cancer can also be elevated from infection - even a PET scan.)

As Mocha says, only a biopsy can tell for sure - but a patient has to have enough reasons to justify a biopsy.

If LDH Is very high, then the doc might order an ultrasound of am external node because an ultrasound can help to tell if a node is cancerous or just "reactive" which means it's doing it's normal job of fighting infection.

Your primary care doc might not be familiar with "Primary Mediastinal B-cell lymphoma", since it is rare. I'd mention it.

Does the inhaler help? If so, I'd think that argues to infection and not something like pleural effusion or ascites from lymphomas in the lungs.

You didn't have a chest x-ray for pneumonia?


Or you might just start getting better just like that - which is what your doc seems to be betting will happen. I would also guess that all this is due probably to an infection.

[Ken_PA]

Well, maybe Mocha can say more about the possible role of hormones in all of this. But yes, some people are much more reactive than others.

As far as lymphoma getting in to the kidneys, that is possible but I'd think that is very rare.

I wonder if that history is why the doc gave you a CMP - which includes tests for creatinine and BUN, which measure kidney function.

[Mochadelicious]

I'm not really sure how hormones play a part in lymphoma, however my hormones seemed to be really messed up after going through chemotherapy.  

The weight loss can be a sign of lymphoma, however I believe it would have to be much more for doctors to consider lymphoma.  (More than 10% of your body weight in 6 months.)  Do you always drink that much water?  Possibly you are filling up on water and eating less?

Checking your LDH would be a good start, however as I mentioned before, a normal LDH doesn't mean you don't have lymphoma.  Mine was completely normal at the time of my diagnosis.  I asked my doctor why it wasn't abnormal, and he explained that even though I had lymphoma in several areas of my body, I didn't have very much lymphoma at each spot, therefore it didn't spread past my lymphatic system into my bloodstream.  Had it been in my blood, my LDH would have been high.

I'm with Ken and believe that you have some sort of infection brewing, especially since your nodes are painful.  Sometimes you have to try different antibiotics until you find the right one to fight whatever bug you might have.  Keep us posted, RedRed.  

[RedRed76]

Evening,

Well I spoke too soon, had a slight fever today. Just 99.0 but as soon as it came it went.

Ken >> You know this is kinda interesting I actually came on here to say I found something weird, I was noticing a red mark under my ear. I pulled my ear back just a mass amount of redness. And tender to the touch.
Also notice tenderness under right under arm.

Also I don't have sore throat and haven't for over a week. Virus I was told last no more then 2 weeks.

Water >> Yes I have do my best to drink at least 4 glasses a water a day. (Attempting to be healthy.) Water doesn't make me full. I have drank more lately because been more thirst.

Weight>> Yes I have been less due to poor appetite. I am currently again keeping track of my calorie intake. And have started to take Ensure to make up for loss of calories.

Bruising>> I thought about mentioning, on my upper tight I have a weird bruise.

Ken>> I have noted the test for the LDH and the type of Lymphoma "Mediastinal large B-cell lymphoma" you have gave light upon (thank you , your like a master researcher)

The inhaler about to give up on. It helps for about 5mins then the pain is back.

No chest x-ray.( I will most likely get one next week.If am still not showing signs of improvements)

[Oh and the story about blood test and ultrasound just example how my body works.]

I will say this, it's hard to see my husband look at me, you can see the worry and concern over me right now.

Thanks You 2

[Mochadelicious]

I'm glad you will have an x-ray if this doesn't improve.  That alone may shed a lot of light on what's going on.  The pain and redness behind the ear and under your arm along with the slight fever tells me your body is probably trying to fight some sort of infection.  

You might want to keep a daily journal of all your symptoms and show it to your doctor next time.  You seem to have a lot going on at once.  What's hard to tell is if they are all related to eachother or coincidental.  

I'll be waiting to hear back from you.  I hope to hear good news.

[Ken_PA]

quote: "Virus I was told last no more then 2 weeks."

yes, most all docs would say that about a limited time for a virus to run. Yet the EBV you were tested for is known to be able to last a lifetime, as well as ones like cold sore viruses that erupt from time to time, and a list of others. People with Chronic Fatigue Syndrome (aka ME) have swollen glands and sore throats for years.

Yet your CBC shows normal white blood cell counts - which argues against infection, especially one that is widespread with inflamed nodes from ear to underarm.

So still another possibility is that the original infection has passed but also stimulated some auto-immune reaction that persists (with the body's immune system attacking its own tissues and acting like an infection is happening).

I'll note there is such a thing a Fevers of Unexplained Origin -- I'm just pointing out that not all conditions get diagnosed.

So, there's really no way to know without more evidence, either from tests or from symptoms changing. Thorough and repeated self examination for more enlarged nodes would be a good idea.

Hopefully, you take a list of written questions to any doc visit and also write down all answers. Ideally, your husband could go with you and do that for you. It's hard to remember things when stressed.

Btw, are you around any cats? Do you live in an area with Lyme Disease?

[RedRed76]

These last couple of days have been very difficult. Just writing this is taking a lot out of me.
I have been getting weaker.

So far the shortness breathe is really making things difficult. Along with more and more horseness. My neck glands are still swollen and get really hot at times mostly at night.

I plan on going to the doctor tomorrow. I promise to keep things posted, just getting very difficult.

Just be glad once this is all over. And i have been trying to keep track of things as well too.

Not around any cats. There was a story on the new the other day about Lyme Disease.

[Ken_PA]

That sounds like pretty bad pneumonia. Even if you can wait until tomorrow, that's not necessarily the best thing to do - for efficiency.

If it were me, and if I had health insurance, here is what I would do: go to the ER now.  They'll immediately listen to your chest with a stethoscope. Then, you can get a CBC and a chest x-ray, which is what your doctor will probably need tomorrow anyway. You'll likely just get sent for those tests before your doc can proceed to diagnose you. This way you save time.

Or BETTER YET, call your doc's office immediately and ask if you can come in today. They'll either say 'yes' or tell you to go to the ER. The advantage at your doc's is that they know your history well - for instance your doc has previously listened to your lungs and knows your previous CBCs. If you have some mystery condition, the ER will only treat you for the most common condition - ERs are not good for diagnosis of mysteries, they are for usual emergencies.

Keep one thing in mind: there is a difference between pneumonia (roughly speaking being fluid/congestion in the lungs) and ascites (fluid next to the lungs which takes up space and makes it hard to breath). Ascites is associated with lymphoma.

Yes, please keep us posted.

[Ken_PA]

there's always also the danger of a viral infection which paved the way for a (worse) bacterial infection -- especially if you now have fever

[RedRed76]

I feel like I have more questions then answers.

Still have fever, checked in 100.3.

I went to doctors and got chest xray. She said that there is no change, looks stable. ( I had xray done start of year for yearly.)
I wish I knew what to look for, because to me the xray's looked different in areas.

She is running more blood test, another CBC, a full EBV Panel, and Cocci (Valley Fever).

Also my glands in neck still swollen, she said not as much as before. But now my under arms, behind head and groin area (learn something new) all Swollen.

So now I have to wait a week to see if its Valley Fever. If she can't find anything and still ill said she is going to send me to Specialist.

So sick of all this, just wish there was an answer.

[RedRed76]

Also was told lungs are clear reason for shortness in breath because I am inflammation.

[Ken_PA]

I would trust that they can tell if an x-ray is normal. Sometimes it might be difficult to interpret abnormalities, but you have none.

Valley fever is a fungus - did you get worse after antibiotics?

On the good side, the rapid dissemination to all those nodes argues strongly against cancer.

"In order of decreasing risk, people of Filipino, African, Native American, Hispanic, and Asian descent are susceptible to the disseminated form of the [Valley Fever]"


If it was me, I'd look into Valley Fever now in hopes of finding what things to do or to avoid doing, in case that's what you have. E.g. certain foods, or temperatures or exercise etc.


OTOH, are you near the smoke from any wildfire? Just a longshot.

[RedRed76]

No change with the antibiotic.

Not by wildfire and don't smoke.

Sorry I don't understand >> "the rapid dissemination to all those nodes "
From what I have been reading there warn about when other glands start to swell.

Valley Fever is help with Fungus medication. (My dog has it.) LOL I couldn't exercise if I wanted to I have no strength its starting to get difficult for me hold my daughter.

Keep all posted

[Ken_PA]

quote:

Sorry I don't understand >> "the rapid dissemination to all those nodes "
From what I have been reading there warn about when other glands start to swell.

---

lymphoma would not spread so much in a few days, but infection can

also, nodes wouldn't enlarge so quickly from lymphoma, but can from infection

[RedRed76]

Still Ill and still wonder ??/
Well got some of my test back, I don't have Valley Fever. I don't have Mono, but did find out that I show I had it when I was child. (No recollection.)

Went to ER last night, my throat feels likes it getting tighter. But when open mouth air way completely open. I started to vomit during this time, profusely. I was given Benadryl, Zofan, and P xxx (another stomach med.) I actually had to get 2 shots of Zofan. Something weird I notice when I had IV, I could taste it. The slain tasted like metal to me. (This is not my first time having IV: my daughter while pregnant made me very sick. I could not drink water without vomiting it. I was on Zofan for 6 months and 3 ER visit for dehydration.) The ER could only help with symptoms since no ENT which he said I need, he could not even refer me to specialist.

I am very weak, no change. Still having on and off fevers. Still swollen glands in neck. And now having issue eating, have to drink water every time its getting stuck. (Im eating soup no more mushy so not so much complication.)

I have an appointment for ENT this Friday. I will keep all posted. Be nice to get to the end of this.....

[RedRed76]

I went to ENT, he did a quick scope and nothing down my throat. He is having me do a Baruim Swallow (for neck) and blood test: Thyroid Profile w/TSH - ANA - RF.

I have now lost 6 pounds, in a month.
My glands in neck still swollen, very tender right now (I have noticed 1 pattern is that they are very tender in neck during my monthly cycle.)
But for the last 3 days no fever ( but getting night sweats.)
Still very weak and fatigue.
[Able to eat reg. food from time to time have to use water, food get caught.]

I figure by now this all just be over with...

[Ken_PA]

Sorry you haven't found an answer. This reminds me somewhat of people with chronic Lyme, of Chronic Fatigue Syndrome (ME/CFS) which is said to begin with an infection. There are more than a few conditions that medical science doesn't yet understand.

Thanks for making the effort to post back with an update, even though you must be worn out.

[RedRed76]

I had went in to the doctors again because of concern over the amount of petchiae I keep getting.

My doctor saw nothing wrong with it said that she was concern about vasulidus. (Which is a rash of petchiae.) [ What I didn't.]

My lymph still swollen she told me that some virus could take 2 months for them to go do. We did do another CBC and Bleeding Time test. (THANKFULLY) She did it more of my concern because I am still really fatigued and swollen.

My white count is currently: 3.2 ( I was drawn 2 weeks ago and was at 6.9)
Something called granuloctes has dropped ( she said has something to do with immunity)
And I had when younger (didnt know ) CMV.

Now my doctor is concerned (due to blood and family history). I have a CT for Neck Monday.

[RedRed76]

Called the ENT about blood test results and got another abnormal blood test , RF. They want me to see a Rheumatologist. (Autoimmune disease specialist.)

Fevers are back as well. (Noticed when was really upset about some family issues had gotten a fever.: Thats new for me.)

[Ken_PA]

well, the immune system can attack immune cells and destroy them - whether as part of fighting an infection or else as auto-immunity.

If your neck CT shows "fatty hilum" in the lymph nodes then that almost always means they are not cancer.

[LynneMargot]

I am sorry to hear that you are sick and unable to get a diagnosis.  I 'm a teacher and at the end of school 2010, I had similar symptoms.  I was coughing and over time it got worse.  I had to drink water or liquid with every meal or any food to get it down. My wbc was low and my mammogram showed swollen glands under my arms. I had a very difficult time getting a diagnosis, and I was seeing an oncologist. Prior to that I was discounted by my primary care doctor, unfortunately.  It took nine months and changing doctors three times, but I finally got a diagnosis of large, diffuse b-cell lymphoma, stage three. It was ridiculous that it took so long to get a proper diagnosis, which was done by my doctor surgically taking an entire swollen lymph node for analysis. Prior to that I had a bone marrow biopsy (abnormal), lab work (low wbc), and CAT scan and  MRI (both abnormal) Finally, I had the biopsy, which is what is generally recommended for persistently swollen lymph nodes. That is probably what you need to have done. I hope that you soon  get answers.  I know first-hand how difficult it is to be sick, unable to get  treatment, and not to know what is  wrong. Keeping you in my thoughts.  

[LynneMargot]

There are other things that look like lymphoma, and one of those is Sarcoidosis, which is an autoimmune disease. The Rheumatologist should be able to help with this. I thought that I had Sarcoidosis at first,  because my symptoms were more like Sarcoidosis than lymphoma. It turned out to be lymphoma though.  I did see a Rheumatologist and he recommended the oncologist that finally diagnosed my problem.
Good luck with your situation.

[RedRed76]

Quick Update:
Down 8lbs.

Fatigue is worse

I do have appt. with Rheumatologist the end of the Aug month.

Have a new regular doctor. After getting the call from my other doctor that my CT of neck came back normal and wanted to see me in month. And had no concern for the low white and gran cells. I decided to get copies of all test and find a new doctor.

I would suggest for anyone going threw issues on going : GET COPIES OF TEST.

I found out from my blood work when my white blood cells were low so were my red, but was not inform of that.
I found from my CT scan: There is 13mm greatest dimension lymph node in level IIA on left and 12mm lymph node in level IIA on right.

My new doctor told me you can not rule out Lymphoma from just CT of the neck. Actually chuckled when telling him this information from my old doctor.
And concern this has been going on for over 2 months.

I will con't to keep all posted ~

[Ken_PA]

You're certainly not having an easy time of it. But at least the prime suspect for now is auto-immunity and not cancer.