CFS & Enlarged Lymphnodes??

Discussion in 'Fibromyalgia Main Forum' started by Moonshyne, Nov 2, 2005.

  1. Moonshyne

    Moonshyne New Member

    Hi All..

    I"m new to the board and had a question perhaps someone can help me with? Has anyone w/ CFS had issues with enlarged lymphnodes of the throat and elevated white count???

    Last Oct. I had a lymphnode in my throat get so large it had to be removed and biopsied.. no cancer was found. Now a year later the throat specialist tells me my throat is still too full of lumps and sent me to an Infectious Diseases dr.... Who then told me the enlarged lymphnodes can only be caused by CFS... and I needed to seek treatment by a Rheumatologist. Which took me quite a while to find, but finally have an appointment scheduled with one next month...

    Anyone have any info on this??
  2. beth0818

    beth0818 New Member

    i have cfs and often have swollen lymphnodes. thought i had chronic mono for a while because of it. doesn't ususally get too bad but last winter i landed in the ER becasue my through was so swollen i couldn't swallow or barely breathe. the lymphnodes in my neck and armpite swell from time to time.
  3. fitzh2o

    fitzh2o New Member

    Hi Moonshyne,

    I've had CFS for about 10 years now and yes, sore, swollen lymphnodes are common along with a sore throat. It has come and gone the whole 10 years I've had CFS. I'm afraid it's part of the curse! I have had to go to the doc a few times when it gets really really bad, but usually it will pass after a while.
  4. Mikie

    Mikie Moderator

    Of patients with CFIDS test pos. for from one to seven chronic infections. My doc told me that any time one has enlarged lymph nodes, it is a sign of infection. Doesn't sound as though the infectious disease doc was interested in finding out what is making you sick. A rheumie typically isn't much help for these things.

    The FFC's run a lot of tests to determine which infections are causing these symptoms and they prescribe meds to help rid the body of them.

    My docs and I had to do all this on our own because when I started fighting the infections, little was known about it. We have posted a lot here about these infections and the various treatments: ABX, AV's, TF's, Heparin, colostrum, undenatured whey, and probiotics. You can use the search feature to bring up our old posts. Good luck to you.

    Love, Mikie
  5. pinkstar

    pinkstar New Member

    the lymph nodes in my throat swelled up one day and never went back down.. shortly thereafter the ones in the back of my neck swelled to the size of a peanut that i can still feel to this day.. i was told it was from hairdye.. *coughsBScoughs* so yea.. now that i am being properly treated, i learned it was due to chronic sinusitis.. if you have multiple upper respiratory issues, it could stimulate that.. i alwaaaaays have white blood cell issues.. either they are in my urine or too high cause my body is always attacking something or having something wrong... i would definately try to find a rheumy who is well informed and WILL do blood work...

    good luck!
  6. Moonshyne

    Moonshyne New Member

    Thank you all for your help with this!

    I definitely got the impression the Infectious Disease Dr. didn't want to waste her time with me. Oddly enuff where I live there is only ONE Rheumatologist that treats CFS/FMS and one Infectious Diseases dr that would even see me and and that took a miracle to achieve. Even though she wouldn't do a thing for me.

    Cleveland Clinic would probably be my best option, but gettin' back & forth isn't an easy thing to accomplish, even tho they are only 2 hrs away. My family dr & I have been struggling with this on our own for the past 4 years getting no where. We are at a loss as to where to turn.
    I don't have alot of hope with the local rheumy either, but he's all I've got thus far. I got diagnosed at Cleveland Clinic 4 yrs ago with hydrocephalus, Barretts Esophogus, CFS and fibro, but couldn't get back and forth, and my city doesn't offer much in the way of physicans or support for the CFS/FMS.

    No one here locally has a clue how to deal w/ the infection issue either. The elevated white count has been consistent the last 4 years also. Family dr has no clue what to look for there. Thanks fo the tip, I"ll dig thru the older posts and see if I can find anything there that will help us.

    Mikie, you said the FFC's run alot of tests.. what is an FFC please??

    Thanks to all who responded, your help is greatlyl appreciated.. I feel like I'm flyin' blind here...

    Blessings to all...

    Moon
  7. Moonshyne

    Moonshyne New Member

    Just wanted to also note when I saw the Infectious Diseases Dr.... she told me Chronic Fatigue Syndrome usually only lasts 3 years !! lol... I'm not sure what she's smokin'...

    I told her the dr. in Cleveland told me I'd probably had it for about 15 years and didn't know it....

    Her response to that was ... it was because of the Epstein-Barr Virus I have....

    hmmmm..... ya gotta wonder about some of these drs....
  8. pinkstar

    pinkstar New Member

    fibroandfatigue.com

    its a fibromyalgia and fatigue center. great people. i go to the one in pittsburgh. you're a bit of a drive away, but it may be worth it. they are caring well informed people and WILL help you!
  9. Mikie

    Mikie Moderator

    They are the "mega-stores" of FMS and CFIDS. FFC stands for Fibro and Fatigue Clinic. Chronic infections are not likely "the cause" of our illnesses but they can be triggers of them and infections of opportunity. We cannot heal until the infections are addressed. I am so impressed that the FFC's recognize this. There were none around when my docs and I started treating my infections. We didn't do all the definitive tests which the FFC's perform. We did it all empirically, stumbling in the dark. Still, amazingly, my own treatment regimen evolved in the same general direction as that used in the FFC's.

    I believe the FFC's are on the right track and if I were starting out and one were near me, I would go there.

    If not, one can do hours and hours of researching stealth, chronic infections as they affect us, print out the info, and try to convince one's doc to help with testing and prescribing. As I've stated here often, I do not believe we can heal until the underlying infections are addressed.

    Love, Mikie