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Posted By : Aliciamabg - 2/6/2017 6:40 PM
Hello - I am new to the site and have never, until now, thought of using a blog site as a helpful resource. I'm optimistic : )

Here's my problem - I started with weird symptoms about 4 years ago, long story. Currently, I have diagnosis of Sjogren's, although symptoms have improved and seem to come in waves. High ANA, Sed Rate, and CRP's are over 200 (during flares).

New doctor doesn't believe that I in fact have Lupus, but certainly auto immune something. This past July I became very suddenly ill with fevers of 101 to 103.8 for 8 days with no let up. Then two weeks to recover and regain my strength. Intense headache with shooting pains. Body ache, weakness. No infection, no other symptoms. CRP was 266.2, Sed Rate 87, ANA positive, speckled both at 80.

This has happened three times now since July. It leaves as quickly as it comes. Same thing each time but duration has shortened. Lab results are all similar. I've been tested for West Nile, Zika and most recently Borrelia which came back positive but only for the IgM. IgG was negative. He prescribed me Doxy something which I did not take. After extensive reading, it's a false positive.

As a side note, two years ago I came down with active EBV and was sick for 6 weeks with it. I did have Mono as a teenager. Tests showed that EBV was acute even 6 months after I was sick. I've read some interesting material about EBV and false Lyme Disease, etc.,

I have constant pain in my left side for about 3 years. It became debilitating and prevented me from driving, sitting, you name it. I began taking Amitriptyline about a year and a half ago and it has been a life saver and while the pain is constant, it is very manageable.

Sorry for the long post. Any thoughts or ideas. Do my symptoms sound like anybody else's? Of course finding a new doctor is on my list.

Thank you, Alicia confused

Posted By : Lynnwood - 2/6/2017 7:56 PM
What kind of Dr are you seeing? What kind of Dr diagnosed the Sjogren's?

Note that EBV and Lyme aren't generally related to Lupus.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2000
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

Posted By : Aliciamabg - 2/7/2017 9:49 AM
Thank you for responding,

I was seeing a Rheumatologist and she is who diagnosed the Sjogren. The lab work showed Positive ANa, speckled pattern, high ANA pattern, high ANA TITER of 160, high Pattern 2 and TITER 2. My ANA 12 panel showed high Cardio Antibody and high ANTI-RO (SSA) AB. (not sure what that is)

At that time I also had critically low B-12 and low D. Diagnosed in August of 2015. When I had my episode this past July of 2016, my Rheumatologist refused to treat me thinking it was an infection. It was not. I insisted on lab work at a minimum and then got a referral to a new doctor who an internist. I am seeing him now. When I had my third episode, he tested for Borrelia which came back positive for just the IgG. The lab called and ask me to come in for a re draw because of something, they weren't real clear, so they are testing for both again. Which is good, but looking at the info on the web, it is highly unlikely I have Borrelia. Still waiting for the results.

Between episodes, I feel relatively good. My dry eyes and mouth are much better as well. Going back about 4 years, my symptoms have moved all over from my head, then to my heart (area), not sure it was my heart, then my eyes became swollen and painful, then it moved to my side, which is where I'm stuck along with the high fevers, etc.

I have had 3 ultra sounds of my organs and abdomen, and MRI and a CT. All clear according to the Radiologist.

Thank you again. Any of this sound familiar?

Posted By : Butterflake - 2/8/2017 12:48 PM
Hi Aliciamabg. The anti-RO SSA antibody is what becomes positive if you have Sjogrens. I am curious about the high fevers. Can you tell me what your Complete Blood Count (CBC) was during these times? Also has anyone tested your IgG levels and the IgG subgroups?
SLE '05, Sjogren's, Fibro, Raynaud's, major depressive disorder, anxiety; CVID (Common Variable Immunodeficiency); IVIG and Benlysta infusions monthly; Hypertension; Osteoarthritis of the spine, right knee, fingers, toes; Bursitis right hip; Osteoporosis, CNS problems, GERD, angina, 1st stage kidney disease. Many meds: better living through chemistry

Posted By : Aliciamabg - 2/8/2017 5:50 PM
Hi Butterflake, I am currently traveling for work and will not have access to my labs until late Friday. I'll take a look and see what I can find. Thank you for responding. : ))

Posted By : Bsime - 2/25/2017 1:58 PM
EBV has been linked as a trigger for different AI diseases and SLE lupus is one of them.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3766599/

Bill
MCTD (SLE Lupus, polymyositis, scleroderma). Diagnosed 2005. Kidney, liver, GI tract, dysphagia, raynauds, barretts esophagus, quadriplegic in 2005. Recovered and now active in downhill skiing, golf, hiking. Meds: amlodipine, benezapril, omeprazole, potassium, folic acid, vitamins, maxide.

Remain Optimistic and you can overcome.

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