The latest in tracking down the culprit in this mystery

[DRunnerchick]

Well, another episode in "As the Stomach Turns"... (Just my attempt at my usual dark sense of humor).

My eagerly (?) anticipated appointment with the Infectious Disease specialist to see if he could shed some light on my Epstein Barr virus titer went as well as could be expected. It is a new office at a new hospital, but the registration process went very efficiently. It was a breath of fresh air, actually. Other than the parking lot, that is! I thought there might be a throw down for the spot closest to the elevator. I shake my head and wonder what on earth is wrong with people. I had my daughter with me, with her newly acquired boot (soft cast) and she told me she was willing to walk farther to prevent the shedding of blood. ha!

I had to wait a bit as I.D. is also the same office as the Travel Clinic which has much quicker appointments. They probably took one look at my file and ran for cover. By luck of the draw or divine providence, my appointment was with the director of the clinic, Dr. S. I'll refer to him as Dr. Sleuth, as I think he might actually look for things and poke around. I am not sure how long my appointment was supposed to be, but he spent quite awhile and gave me a thorough going over, perhaps 45 minutes to an hour. He asked a lot of questions and said I was referred so he could interpret my EBV results. He then looked up graphs on the internet and showed me how the various antibodies wax and wane over time and that mine don't do that (which I knew). I have learned to not interrupt because sometimes they reveal new information. So, that led him to ask more questions. He was surprised that an EBV titer hadn't been run before October when I have had the fatigue since 2014. Of course back then it was explained away as anemia and I was told to take iron and better my sleep hygiene. The second EBV titer run in December didn't have all the antibodies for comparison. He ran another full panel yesterday and will read my medical records going back to 2015 or so (I supplied him with pertinent dates/doctors to weed through the records) and then he will let me know when I need to return as he wants to get a better grasp on what he's dealing with. One thing he couldn't understand was that Rheumatology dx'd me with sero- RA and I took Methotrexate (a toxic drug -his words) and then they took me off it and now aren't treating me for anything. He wants to try to understand what their (each doctor's) thinking was when they ordered a test or treatment before he decides what to do. Many events have transpired since Rheum did that, my cardiac event, falls, neuro consults, ANS testing etc.

Before he sent me off he asked what I thought about the EBV since I have a medical background. I told him I didn't believe the interpretation given with the October and December titer results saying I had a recent infection was accurate. I know I didn't have 'mono' and the fatigue has been much more chronic. I told him I still thought it was autoimmune and that EBV could be an instigator in many cases such as SLE, RA and MS. I also told him that I went to Cambodia on a medical mission in January and had a conversation with our medical director (a hem/onc who is an expert in EBV mutations) regarding epigenetic changes of B cells, just to make him think. Sometimes, I like to keep them on their toes too. If they know you have access to someone of that caliber somewhere else, sometimes they try harder for you and we the patients don't have to rely on sheer altruism to get the job done.

I just want my life back, even a portion of it. I told him that too. I wasn't on the top of my game. I was pretty tired and could have been more specific in answering questions. It was a long week for me. My daughter, who has bilateral CRPS was put in a boot for a fracture (lis franc fracture- hopefully won't lead to a non-union situation). She saw the foot surgeon on Wednesday. We are quite the pair! Fortunately, we found Seattle Chocolates Sparkling Mimosa Dark Chocolate Truffle Bar to save the day in the hospital gift shop!

Well, that is the latest turn. I know many of you have your own journey. Thank you for sharing my burden by listening to me blubber on and on about all this muck. Dr. Sleuth is on the case. Fingers crossed. May we all get the answers we need and the effective treatments...and in the meantime, Sparkling Mimosa Dark Chocolate Truffle Bars to nibble on when we need to grin and bear it. Love to all!

DRunnerchick

[Loopy-Claire]

Wow, and you can find humour in the situation!!! Well done and thank you for a morning giggle and smile, need this chat room more than a radio lately.

No one else seems to be able to laugh about themselves anymore, or their woes, the AAAHSS and the oooohs of life have gone into the tissue box.

Well, Im one week on my meds, not feeling any relief yet but sooo positive I will.

I am tired of feeling tired, tired of being sore, my fingers screaming when I try open a bottle, tired of feeling sorry for myself, tired of my tears, tired of making lists and not doing them!!!

Today I am going to go buy my pjs, tired of sleeping in odd tops and bottoms coz I dont have pairs to change into 2 to 3 times a night coz of the sweats.

And I will try upload the pics here to show my shopping spree (going to add some chocs and sweeties to my viewing and perhaps a few magazines!!!).

Have a great day and keep up the positive vibes...your smile makes the rest of us smile.

Claire

xxxxxxx

[DRunnerchick in reply to Loopy-Claire]

Thank you Claire!

I hope you find a pair ( Or several) of pajamas worthy of Mimosa Dark Chocolate Truffle Chocolate bars with the appropriate slippers. One must set the bar high! I know you can do it.

Humor is my secret weapon. When manure happens...I just manufacture a reason to throw a party or celebrate. My mantra is: All days are good, some days are better.

🌈😘🌷🎉

D🏃🏽‍♀️

[Hidden]

Sorry I missed this post from you D - was up to eyes in PhD funding application a week ago.

I love dark humour along with dark chocolate. We need it - it’s the vital ingredient that keeps many of us going.

Interesting too about your EBV journey. I know nothing much about this but your post makes me believe that I should. Particularly as I was also diagnosed in 2011 with sero-RA following a run of sudden loss of my parents, something like Swine flu and some kind of bizarre food poisoning.

I too took Methotrexate and a few others for a several years and I too found that things went sideways rather than politely remitting as my then rheumy had hoped. I think being rediagnosed with seronegative (ie lip biopsy positive) Sjögren’s has been a mixed blessing but that’s another story of course. Xx

[DRunnerchick in reply to Hidden]

You're such a busy bee! The last specialist I saw wondered why on earth a rheumy would put me on toxic drugs and then undiagnose me. I bet you can relate. So far the rheumy best guess is that it isn't pSS but could be Behcets but the ⭐️Neuro Dr.P thinks it could be SLE or MS because of the CNS involvement...lalalala

D🏃🏽‍♀️

[Hidden in reply to DRunnerchick]

Ha ha it’s easy to be busy from bed!

I recently pointed out to new rheum that no self respecting rheum would have diagnosed RA and put me on MTX and Hydroxy on a whim. He didn’t undiagnose me - that was a colleague in a neighbouring hospital who cast doubt on my first rheum’s diagnosis of RA. I then moved again and got rediagnosed with pSS.

So, having lost confidence in rheumies to get it right, I attached photos of my hands at diagnosis and sent them to my new rheum. So I think she’s reinstated RA now just in case it comes back.

Personally I don’t think I have RA but nor am I entirely sure I have pSS. I do think I may have a slow burning Scleroderma with SS though - or perhaps Sjögren’s with UCTD.

Sjögren’s can be misdiagnosed as MS too. I don’t know enough about Behcets to know if it causes CNS involvement for some but I know it often very closely resembles Sjögren’s. Aren’t vaginal and oral ulcers the distinguishing feature? X

[DRunnerchick in reply to Hidden]

Behcets can have oral, nasal and genital ulcers. It afflicts predominantly males in all countries except UK and US, where women outnumber the men. Behcets is more rare. Some classify it as a autoinflammatory instead of autoimmune but that is hotly debated. It typically has vasculitis and CNS involvement, secondary sicca, organ involvement and is confused with lupus if there are no detectable vaginal ulcers and -ANA.

D🏃🏽‍♀️