Troubling illness for 3 months.

Posted by mattkl817 @mattkl817, Mon, Oct 14 6:08pm

About three months ago I cane down with a flu like illness that resolved in 2-3 days. For weeks after I have felt fatigued and had multiple swollen lymph nodes in my neck. I have felt weird pain areas around my spleen and groin on and off that will come and go for days or weeks at a time the one symptom that has stayed constant is the lymph nodes. They aren’t huge but are noticeable. One is very hard to the touch and they don’t hurt. I had mono once two years ago and I have had EBV bloodwork done twice and both times the bloodwork was indicative of past infection and no active infection. Been to three different docs who say it’s mono or an unknown virus but I’m worried it could be something worse.

Tell them you want to be checked for CLL.

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Hello @mattkl817. @jvertalka gives a valid suggestion as some of your symptoms are potential signs of CLL, although it is important to get bloodwork done by a specialist before jumping to or worrying about potential blood cancers. @mattkl817, have you had recent bloodwork done? Did they look just for past infections or did you get a more comprehensive workup done to look for potential more serious culprits?

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CBC showed slightly elevated monocytes

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@JustinMcClanahan

Hello @mattkl817. @jvertalka gives a valid suggestion as some of your symptoms are potential signs of CLL, although it is important to get bloodwork done by a specialist before jumping to or worrying about potential blood cancers. @mattkl817, have you had recent bloodwork done? Did they look just for past infections or did you get a more comprehensive workup done to look for potential more serious culprits?

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Also tested for a bunch of suspected viruses like cmv and Lyme all negative

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@mattkl817 What type of Lyme testing did you have done ELISA, antibody, Western blot and with which labs? I ask because I had two negative Lyme tests the first go around and then after retesting same lab but different test (Western blot) it showed I had "reactive" bands which are supposed to be Lyme specific. So I am retesting with Igenex, Stonybrook and MDL for co-infections. Also, look into Mycoplasmas as well. It's easy for things to get missed if the regular labs look okay. You have to unfortunately be the researcher and self advocate. My strange symptoms brought on anxiety and it created a cycle and then I didn't know if it was the anxiety or the symptoms. Hang in there and hope you get well.

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@aeg73

@mattkl817 What type of Lyme testing did you have done ELISA, antibody, Western blot and with which labs? I ask because I had two negative Lyme tests the first go around and then after retesting same lab but different test (Western blot) it showed I had "reactive" bands which are supposed to be Lyme specific. So I am retesting with Igenex, Stonybrook and MDL for co-infections. Also, look into Mycoplasmas as well. It's easy for things to get missed if the regular labs look okay. You have to unfortunately be the researcher and self advocate. My strange symptoms brought on anxiety and it created a cycle and then I didn't know if it was the anxiety or the symptoms. Hang in there and hope you get well.

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Hi I’m not sure what they specifically tested for. I also know that my anxiety can make things worse I definitely understand how that cycle goes. I take Zoloft 25mg to keep my anxiety at bay

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@aeg73

@mattkl817 What type of Lyme testing did you have done ELISA, antibody, Western blot and with which labs? I ask because I had two negative Lyme tests the first go around and then after retesting same lab but different test (Western blot) it showed I had "reactive" bands which are supposed to be Lyme specific. So I am retesting with Igenex, Stonybrook and MDL for co-infections. Also, look into Mycoplasmas as well. It's easy for things to get missed if the regular labs look okay. You have to unfortunately be the researcher and self advocate. My strange symptoms brought on anxiety and it created a cycle and then I didn't know if it was the anxiety or the symptoms. Hang in there and hope you get well.

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Also what are your symptoms like how did it progress for you?

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@jvertalka

Tell them you want to be checked for CLL.

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Isn’t CLL very rare in younger people (I’m 22). How do I approach my doctor about this? I haven’t had another CBC done in three months.

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Another thing I’ve noticed in the last two weeks or so is I’ve had a few nights where I’d have night sweats. No fever or chills, but enough to make my sheets a little damp, but not soaked. I have noticed that the night sweats happen on nights where I drink alcohol. I don’t drink a lot any more the most I’ve drank is 3 beers since I’ve felt sick. I know this can be a sign of cancer but I would like to think it’s a side effect of mixing alcohol with my Zoloft. Just thought I’d add that detail

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@mattkl817

Isn’t CLL very rare in younger people (I’m 22). How do I approach my doctor about this? I haven’t had another CBC done in three months.

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Just call and ask, do you think I need an update on my CBC, it’s your health you have to take charge and be active in the outcome.

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@pecorara

Just call and ask, do you think I need an update on my CBC, it’s your health you have to take charge and be active in the outcome.

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That is a good point. It’s just hard to want to ask these questions when the doctor thinks they are always right and that I’m over reacting

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You pay him to do a job, now you tell him to get it dun, it's your life.

Liked by mattkl817

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Another thing I’d like to add to my situation that I’ve noticed is I’ve been growing a lot of tonsil stones and some other white spots in the back of my throat I’ve never had before. Not sure if this is related to whatever I have had going on. Trying to get in to a new pcp since I moved so it may be a while till I can see a doctor

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