lupus or lymes???

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horsegirl93
Regular Member


Date Joined Jun 2014
Total Posts : 22
   Posted 6/19/2014 1:12 PM (GMT -6)   
Hi everyone ! im currently in the journey of figuring out what the heck is wrong with me !!! Last feb I got bit by a tick in Costa Rica, and didn't notice/pull it off until I got back home to Toronto, On. never thought anything of it as I never had the classic "bulls eye" rash. but during the summer I developed bad headaches, and come fall, persistent throat infections that weren't clearing up with antibiotics. I have what feels like the swollen throat, lots of phlegm coughed up and a horsey voice. Then in November is when I went downhill, until January I was dealing with such swelling and pain in my knees and hands I couldn't walk and ended up in emerg. emerg told me I had RA and stuck me on 50 MG of prednisone.......blood work showed NEGATIVE RA.........family doctor was baffled and sent me to a Rheumy who has now diagnosed me with Lupus....I told him about the tick and he did an elisa test which came back negative and since then has told me not to doubt his 'professional opinion' and that I have lupus and nothing else. im currently on prednisone 5MG and 400Mg of plaquenil . my c3 & c4 is completely normal. I have low white blood cells, and a VERY high anti-ds DNA (728) protein in urine ......The medications are not relieving the symptoms of joint pain, seeing things in the corner of my eye, night sweats, always hot , etc. Went to a naturopath and had a WB done, and had lots of IND , and a mix of positives and negatives. but the test says negative. the naturopath (and 3 others i sent the WB to) says yes its lymes and the reason for the IND is because the plaquenil is fighting the lymes.

what do you all think? im in a stump and cant stand being crippled at 21!!!

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7725
   Posted 6/19/2014 1:20 PM (GMT -6)   
Look at www.lupus.org and read about the 11 main symptoms of Lupus. Do you present with 4 or more of them?

Often plaquenil doesn't show any effect for 4-5 months as it builds up in your system. Are you feeling tired? Like your whole body has the flu? Sometimes Lupus feels like that and I'd expect your Dr to increase the prednisone.

Check out the Lyme's Forum hear at Healing Well - they will know more about how Lyme presents than we do.

In general, I'd say get second opinions from two Drs, 1) a rheumy who is associated with your local chapter of lupus.org, and 2) a Lyme literate Dr who is associated with whatever Lyme organization there is.

Let us know how it goes!
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously." - Oscar Wilde

horsegirl93
Regular Member


Date Joined Jun 2014
Total Posts : 22
   Posted 6/19/2014 1:42 PM (GMT -6)   
I've been on plaquenil for 6 months now and yeah I do have more than 4 symptoms but go figure, they could be for lymes disease as well!! its a battle of whats right. Ive been emailing LLMD's from anywhere I can find (beware of your email address I will annoy you !! haha) and been sending them my western blot and blood tests and seeing what they think. its a 50/50 answer of lymes vs. lupus across the board .
just would like to know what obvious blood tests/results lupus people are having ?????
my rheumy even said its weird how my C3 and C4 are totally normal! the only thing out of real whack is the Anti DS DNA !!
Too young to be dealing with such cr@p.......currently on 400MG of Plaquenil & have tried 5 times and counting to get off Prednisone. started at 50MG and am down to 5MG........wish me luck!

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7725
   Posted 6/19/2014 1:51 PM (GMT -6)   
Lupus can be diagnosed with absolutely NOTHING showing up in any blood tests.
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