Hi @lisalucier,

Thank you for responding. I do hope @johnbishop might have some helpful input. I’ve been following the Autoimmune Diseases group you mentioned for a few weeks and have read through many of the discussions. Some of the threads have provided useful info during visits with my doctors here. I haven’t seen much specifically about what can cause ANAs that are that high though.

Geez, I hadn’t intended to go too much into the specifics of the course of my illness simply because of the dizzying array of seemingly unrelated symptoms. Sure-fire way to sound like a loony to a doctor is to list more than 5 symptoms at an appt. But hopefully folks here are more understanding, so here goes!

*Vision problems – dry, tired, burning eyes that often feel gritty, worse in the sun
*Difficulty concentrating and thinking
*Fatigue (not the first symptom, and has improved slowly)
*Difficulty swallowing
*Deep pain in muscles, worst from neck to tailbone and in big muscle of left leg and shoulder
*Adrenaline rushes like the feeling you get when you fall from a plane (Jan – April mostly)
*Back pain around left kidney/adrenal/spleen (constant, horrid burning or sharp pain)
*High blood pressure
*Headaches, usually radiating up from the base of my skull (constant since July)
*Neck pain (constant since July)
*Painful, flaky dry skin rash on right middle finger at knuckle (resolved with prednisilon)
*Insomnia (Jan – April, now resolved)
*Chills and sweats
*Decreased appetite (Jan – April, resolved with prednisilon)
*Weight gain
*Extreme thirst & frequent urination (Jan – April worst, now wake up 1x/night)
*Bloating
*Chest pain
*Super mild intermittent cough, mostly when laying down or in certain yoga positions
*Chronic UTIs, last one took 3 rounds of antibiotics to resolve
*Can’t focus, make decisions, trouble comprehending what I’ve read
*Burning pain in lower back at site of excised lipoma, tail bone, and surrounding area
*Tingling and prickles down left side only
*Wake up and both hands are completely “asleep”, nasty pins and needles when I move them
*Edema? Swollen hands that always hurt and feel stiff

Doctors have ruled out just about everything, really. I asked the rheumatologist today if she thought it could be something like CFS/ME, but her response made it clear she doesn’t believe either of those is a “real disease.” My only other guess is that this is a virus, maybe something like chronic EBV. I was tested for it in March and again in May and both times, the IgM level was 2.2, then 2.1, which was about 4x elevated according to the allowable upper limit for the lab result. My GP at the time said since it was just a virus, I just needed to go home and rest. Since then, every doctor I’ve seen said it isn’t EBV because the IgM level from March to May didn’t change, which means that’s just my baseline.

My husband and I are pretty much at zero here – no idea what to do at this point. If we could use our German insurance to seek medical help in the US, I’d go back in a heartbeat. Or if we could even find a doctor who treated ME or EBV here, I’d try to see them. Unfortunately, the nearest clinic that treats infectious diseases like that is in Berlin, 4 hours away, and I can’t even schedule an appt without having seen a long list of specialists and having had a list of tests. My current GP directly refused to order any more tests at my last appt, and he’s the third GP I’ve seen. The first told me I’m in pain because of “fear” and the second attributed my symptoms to “anxiety.” It’s exhausting and incredibly stressful trying to get help from doctors who clearly think I don’t belong in their office. At what point do you just quit having faith in doctors altogether? At this point I think I might be better off avoiding them altogether and hopefully this nasty thing will eventually just go away on its own.

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@johnbishop

Hi John,

Thank you! I really appreciate your response. As to why the doctors here aren’t taking me seriously, I think it’s a combination of things. I get a sense that much of it stems from the culture here. I’ve gotten the clear message that I’m no more important than the next patient – in fact, one doctor blatantly said that. It’s just widely known and accepted that wait times for an appt with a specialist or for tests like MRIs are commonly 3-6 months. I’ve noticed that across the board, doctors don’t take a thorough patient medical history, family history, only on rare occasions or if you request it do they take vitals – BP, heart rate, temperature, height, weight, etc, and physical exams are either non-existent or cursory. They just have a completely different approach to medicine.

Prior to January 2016, I wasn’t taking any medications, not even vitamins. In April 2017, a doctor rx’ed Tramadol for pain control and I’ve taken it nearly continuously since then, first with liquid drops (though I was taking 1/4 of the daily amount he rx’ed so it lasted much longer). In June, my GP rx’ed long-lasting Tramadol oral tablets instead to be taken twice a day. I’m currently taking them once in the morning, 50 mg tablets. I honestly am not sure I could function without them, which sucks. Other than that, I’m only taking 20000 units of Dekristol (Vit D) every 2 weeks. My vit D was at about half what it should be back in March, when I started taking it. My levels are now finally back to normal as of this week.

I did check the symptom checker on the Mayo site. I’ve been on there so many times! It really is a good resource, but unfortunately it doesn’t allow searching by lab results. If only I could put in my results for ANas, iron, Complement C3c…those kinds of things. Unless there’s a way to do that that I maybe missed?? I’m afraid I really just need a good doctor.

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Examples of rheumatic diseases that might have a positive ANA test include:
1. Rheumatoid Arthritis.
2. Sjogren's Syndrome.
3.Systemic Sclerosis (Scleroderma)
4. Inflammatory Myositis (Polymyositis or Dermatomyositis)
5.Mixed Connective Tissue Disease (MCTD)
6. Overlap of undifferentiated Connective Tissue Diseases.

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Hello @carpe_bean. I have never used this site before & just joined. I just wanted to ask you if you have been tested for Lyme disease & it's co-infections? Ticks rarely carry Lyme disease alone anymore but a multitude of co-infections like Bartonella, Babesia, Ehrlichiosis, Mycoplasma etc. 6 years ago I knew I had Lyme disease & tested the second week after seeing a bullseye rash – but my test came back negative initially. I was not informed at the time that it would take 3-4 weeks for antibodies to form and to retest or how inadequate testing is and the how over 50% of tests will report false negatives. I also didn't realise that only 20% of people will ever notice a tick bite or actually see a bulls eye rash. For years I researched other diagnoses. My symptoms continued and worsened. This may not at all be Lyme disease but it might be something you want to test for. When I first got Lyme my ANA titre was 1:160. It is now 1:2,560; dense, fine & speckled but on secondary testing no sign of Lupus or RA etc. My symptoms ranged from major major bladder & bowel issues, headaches, neck stiffness, terrible insomnia, night sweats, difficulty thinking, cognitive issues, a diagnosis of autonomic nervous system dysfunction, extreme problems with blood pressure, numbness and tingling down left side, pins and needles in my left eye & extreme joint pain. At this point Dr's thought I might have either Lupus or MS. It was then that I remembered that Lyme Disease is known as the Great Imitator and I went back to basics and my initial instinct that this was lyme. I sent my labs to Igenix in the USA – a lyme & coinfection only labaratory and one of the best and I came back with a high positive both both Igenix & CDC standards. Also positive for Babesia, Bartonella & Mycoplasma. Again, your symptoms could be due to other issues but I just thought I would pass this on as your post reminded me a lot of what I went through. I am not sure where you are located. You mentioned German insurance. I have also tested with Armini labs in Germany for viral and lyme infections and they were very good too. I hope this doesn't end up worrying you and that you are already feeling much better. However, if you are not – this might be something you may want to rule out.

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Hi everyone. I wanted to come back and update you all since you were so kind and helpful before. I have seen a couple different rheumatologists and rare disease specialists. I haven't made it to mayo yet, the trip expensive is a bit big atm unfortunately. That said: two of my doctors have two different theories; fortunately the treatment is the same! My rare disease specialist believes I have seronegative Antiphospholipid Syndrome, due to my frequent livedo reticularis and other APS indicative symptoms. My rheumatologist believes I have seronegative Sjogrens Syndrome and some kind of seronegative MCTD. Either way, I have been treated with 200mg then 300mg Plaquenil for the last 5 months or so. Within weeks my bursitis and tendonitis was half of what it was, and my joint pain was significantly reduced. Now, several months out, I have about half the joint pain I had before, and only very mild tendonitis and bursitis, though it persists in my ankles, shoulders, hips, and wrists. I am going to be getting a central line soon so that I can receive more regular infusions for my POTS, which makes a huge difference in my wellbeing, and I recently had sinus surgery which has helped my breathing and infections a ton! They also diagnosed me with Common Variable Immunodeficiency as my IgG was very low, which explains the frequent infections. I definitely still struggle with a variety of things, neck and right upper quadrant pain have been the biggest issues for the last year or so. I may need hip reconstruction shortly as my right hip, we've found on MRI, has some structural abnormalities, tendonitis and bursitis, a tear in my labrum, and a tear in my gluteus maximus. But overall I am doing much better and am very fortunate to have found physicians who treat my symptoms, not my bloodwork, and listen to my concerns. Thank you all again!

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How wonderful that you found doctors who listened to you and were able to put the pieces of the puzzle together in order to reach a diagnosis, @zebraclaire97. It must be gratifying to be feeling better and to have doctors who will listen to your concerns.

Advocating for yourself and continuing to seek answers to hard-to-diagnose disorders is very important. You have shown that being proactive and persistent has paid big dividends in your well-being!

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