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king1234
Regular Member


Date Joined Nov 2006
Total Posts : 491
   Posted 12/11/2013 3:11 PM (GMT -6)   
So Ive had odd health issues for over 5 yrs. Starting with neuropathy (stinging pains in joints and non stop twitching ALL over), odd rashes...then lots of bouts of upper left stabbing pains-drs think its my pancreas based on labs but scans clear. I also get pinching pains in my lymph nodes.

Ive been dx with mono 2x in the last 4 months. Presents with sore throat, body pains and extreme fatigue.

Ive had tests for lupus in the past, all normal. I read that mono can present with ppl who have lupus. Im also asking to be tested for lymphoma.

I just cant help to think all of these odd things are related.

Are people with lupus susecptible to recurrent mono as Ive read this is rare unless you have immune issues.

lburt27
New Member


Date Joined Sep 2013
Total Posts : 10
   Posted 12/13/2013 12:31 PM (GMT -6)   
Hi King,

I've read a few of your posts here and in the lyme forum. A lot of your symptoms sound a lot like mine, every test so far has been negative. I'm in the uk, and about to have bloods sent to Igenex, as I have a bite history in a high epidemic area. I've been getting a few ulcers of late though, so am worried about lupus, but bloods are normal. I have beaus lines in my nails so know something is going on! Mono is a very common co infection in lyme. Didn't one of your signatures say you were pos band 31, which indicated long term infection? It's so ridiculous that I'm hoping for a pos lyme test! Very sorry you haven't found any relief or diagnosis as yet.

Laura

king1234
Regular Member


Date Joined Nov 2006
Total Posts : 491
   Posted 12/13/2013 1:56 PM (GMT -6)   
Hi there-yes I was positive for one of the markers-but in reading more and speaking with many drs I've learned many of these Lyme drs are "quacks". I was put on a ton of meds and frankly could be my pancreas started acting up. I didn't want to keep pumping myself with loads of meds unless I was sure and I just felt I wasn't confident in that dx. I've been bitten by a tick before but never a rash and no big sickness until my 30s which would be 20 yrs after the bite. My mono just started popping up and hoping its not lymphoma. Going to a rheum today

What are your symptoms?
----------------------------------------------------------------------
34 yr old female/GERD dx 3/07/Migraines with Aura/IBS
SYMPTOMS  migratory joint/bone pain, extreme joint cracking, feet buzzing/vibrating, right eye pain,mid spine soreness (like a constant bruise) fatigue and dizzy spells, bumps and indents on nails. 
New as of Aug-muscle twitching throughout my bod NONSTOP DAILY EVERYWHERE. 
 TESTS-BloodCBC,ANA,Sed rate,Lupus,RA, Vit D,Anti nuc,Calcium.TSH T3 -Too many to list -all CLEAR
 Scans/xraysUltra sound of stomach organs,Sig/colonoscopy (mid way through),MRI of head and spine, full body bone scan-ALL CLEAR
2/09-UPPER LEFT SIDE AB PAIN MID CENTER BURNING "DX" AS MILD PANCREATITIS-STILL UNDERGOING FURTHER TESTING.
 
 
 
 
 
 

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 12/13/2013 2:34 PM (GMT -6)   
I don't recall any of us with Lupus having mono as a reoccurring illness. Check out the link 'diagnosing lupus' below - Lupus is NOT diagnosed by a single blood test, but by having 4 of 11 symptoms, which might not include a positive blood test.

I hope the rheumy can help you out, sounds like some odd symptoms!
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously." - Oscar Wilde

lburt27
New Member


Date Joined Sep 2013
Total Posts : 10
   Posted 12/13/2013 4:19 PM (GMT -6)   
I was bitten years ago too, but am now told, one of the hallmarks of the disease, is that it attacks when your immune system is low. For me I did a big move on my own from south England to Scotland, with two young children, a very busy job etc... So chronic stress. Anyway my symptoms....

Started with a cold/cough that lasted for three weeks. Then four or five episodes of lightheadedness. I then suffered a migraine with aure (always had these). A few hours later the left side of my face went numb, this then dropped to my left arm and leg, then 'jumped' to the right side. Prescribed amoxicillin for sinusitis, which stopped the tingling/numbness. Once anti b's stopped, it came back with a vengeance, all over, no rhyme or reason. Muscle twitches literally everywhere. TMJ problem. Migratory joint/muscle pain. Sciatica. Gerd symptoms. Painful soles/burning feet. Panic attacks, mood swings/depression. Derealisation. Beaus's lines. Pressure in my face, feels like its behind my nose/cheeks. Knee pain. Dizziness.

All bloods so far are clear, although borderline low on Vit d. MRI completely normal!!

Would just like some answers, so I can get back to being me!

king1234
Regular Member


Date Joined Nov 2006
Total Posts : 491
   Posted 12/13/2013 5:45 PM (GMT -6)   
Interesting! I've had migraine auras for ages at first I thought it was a stroke as I can't see when they occur

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 12/13/2013 7:36 PM (GMT -6)   
Since y'all are having a Lyme discussion you might get more comments from experienced people by going over to the Lyme board.

Most of us here in Lupus are NOT Lyme-literate.

Cheers,
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously." - Oscar Wilde

Nab
New Member


Date Joined Nov 2017
Total Posts : 8
   Posted 11/29/2017 1:01 PM (GMT -6)   
king1234 did you get bettter with Lyme treatment ?

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 11/29/2017 1:46 PM (GMT -6)   
Nab,

You have posted on a thread that is 4 years old, and the person you are addressing has not been here in all that time. I don't know what your specific issues are, but you might find more help on the Lyme Forum rather than here on the Lupus Forum.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2000
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde
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