Speckled & Homogeneous just a wreck

[oona]

Hello, I'm a 29 year female who has  yet to be diagnosed w/ anything, although I have positive ANA w/ two patterns: speckled+homogenous at 1:160. I have been ill for 4 years, with periods of wellness in between. My grandmother was diagnosed with Lupus very late in life at age 70 years. Recently, I have been experiencing all kinds of symptoms and have not been able to get out of bed for over a month. A bad flare, if this is what that is.

Symptoms include: major digestive issues, pain, numbness and tingling in my arms and legs, abdominal pain, reddening and burning of my palms, strange head pressure and ear pressure (like I have a double ear infection, but there's nothing there), tachycardia 100 – 150 BPM daily, etc.

I do not presently have a doctor, but a nurse practitioner. I will be seeing a GI / Internist later this month, but I have been so ill, and things seem to be getting worse, with new symptoms cropping up all over the place.  

I wonder if there are any tests you can recommend that I can have done to compliment the ANA test? I am especially concerned with the heart and head symptoms, but trying my best to stay on the bright side of things.

The only quantifiable thing that has been found, aside from the ANA test is what appears to be a liver hemangioma, which was not there last year, low blood sugar and a few other "minor" blood level discrepancies.

Any suggestions for tests would be much appreciated. I'm having such a hard time on a daily basis and this is just not my character.

I don't quite understand the mixed connective tissue thing yet, but boy do I know it doesn't feel great.

Thank you so much

[bynnbynn]

A related discussion, hope this helps was started.

[oona]

thanks you again for the follow up!

I've already received so much resistance to finding a solution to my illness. should I expect more resistance when asking about the approach you suggest? I still do not have a diagnosis of anything.

Most of the doctors I've seen have told me that it's all in my head, despite the fact that at least my heart rate has clocked at 150 bpm over and again, on heart monitors, holter monitors, etc. I've seen 2 general practitioners, 5 emergency doctors, countless clinic doctors, a GI/internists, and a liver specialist, etc.

I'd like to know first if I actually do have Lupus, and maybe I'm getting closer with the positive ANA?

We'll see. Thank you.

[Garth L Nicolson, PhD]

No, such infections are not usually found in routine testing.  Chronic intracellular infections do not usually show up on normal blood tests such as a Chem20; however, in severe cases changes in blood sedimentation rate, presence of inflammatory cytokines and other specialized blood tests (not the usual routine variety) can occur.

In our studies on atypical Lupus and MS patients, the majority had chronic intracellular bacterial infections that did not show on routine blood tests.

Of interest to you is that treatment of these infections, although difficult, did result in most of these patients recovering.  We do not know why all patients did not recover, but we assume that other factors were involved.

Unfortunately, the tests that I am suggesting are not covered by the Canadian Health System, so they are usually not available in Canada.

You can get more information on testing and treatment on our website, www.immed.org

Prof. Nicolson

[oona]

Dear Doctor Nicholson,

Thank you so much for your reply.

I'm slightly confused about your response. How is it possible that I might have a systemic infection that is falling under the radar? Especially considering that it appears that it might be attacking some of my major organs. Wouldn't an infection show up in my CBC or elsewhere?

"Treating such infections when they are present almost always resulted in reduction in severity of signs/symptoms with some patients fully recovering after a long period of therapy." Interesting, patients have fully recovered from Lupus / MS (i.e. does this mean that the possibility exists for a patient to go into remission once they've cleared the systemic bacterial infection? Does this also mean that it's possible to have a kind of infection induced Lupus?  

I would like to further investigate this idea (possible get some testing done). Do you know of anywhere in Canada that does this (Toronto is not that far from where I am)?

I am also a bit concerned about the mention of MS. Do my symptoms indicate this possibility? Should I be getting tested for it? Is an ANA test a reasonable test for MS? Or should this be investigated further?

I am currently waiting on the results for the following tests:

CMV Titre
EBV Titre
Anti ds-DNA
IgA
IgA EMA
IgA tTG

I really appreciate your comment / ideas. I have had virtually no luck since I started having trouble when I was 25, four years ago (after I acquired food poisoning on a trip to NYC). It's gotten to the point that in the past two-weeks I've been at emergency w/ dehydration and IV fluids three times already. The IV fluids seem to help lower the heart rate and eliminate some of the pain for a few days. Strange I know.

***@****

Thank you.

[Garth L Nicolson, PhD]

One thing to consider in a case with such heterogeneous symptoms is that you may have one or more systemic, chronic infections.  We have found that atypical cases of MS and SLE are almost always associated with chronic intracellular bacterial infections (Mycoplasma, Borrelia, Chlamydia, etc.), especially when no other possible cause pops out from the lab results and signs/symptoms profile.  

Treating such infections when they are present almost always resulted in reduction in severity of signs/symptoms with some patients fully recovering after a long period of therapy.  A list of the most common infections found in cases similar to yours can be found on our website, www.immed.org, under Clinical Testing.  These tests are NOT routine and will require sending a blood sample by over-night air courier to a specialty lab for testing.