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Autoimmune with no inflammation markers?

I am hoping to get some insight into years of different problems that doctors continue to write off as depression or fibromyalgia (I am a psychologist: it's not depression, and a neuro recently evaluated for fibro and that is not it). I am a 31 year old female. Don't know half my family history d/t adoption, mother died at 45 from complications of severe SLE and RA. My symptoms have come and go over the last decade or so, and here is what has been found/experienced:

Objective:
Low platelet counts (current)
Low white blood cells (current)
Anemia (in the past)
White and red blood cells in urine (past)
two hospitalizations for kidney infections, one with the addition of a kidney abscess and dangerously low platelets
one hospitalization for a severe throat abscess
Deficient in vitamin D (current)
Cyst on pineal gland
One white lesion on brain MRI
Episcleritis (inflammation of eyeball)
Negative for ANA, Lyme, RA titer, TSH, ESR, Anti CCP

Symptoms:
Pain in joints and muscles, most severely in my low back and neck, hands and feet
Numbness in big toes, tingling on and off in hands
Migraines
Low grade fevers on and off
Severely itchy rash on elbows and knees that comes and goes, looks like small bumps under the skin
Constipation
Rectal bleeding
Sores inside nose on and off
Hair loss around hairline
Stiffness in morning and after sitting for long periods

Hematologist and neurologist suggested autoimmune as strong possibilities d/t blood counts and inflammation of eye; Primary care physician blew this off and continues to assert depression/fibro because of my negative inflammation markers. I am reaching my wits end. Some days I feel like I can barely move, and it hurts me to not be able to play with my young child like I want to. Awaiting appointments with gastroenterology and rheumatology, but am very scared that they will react to me the same way my primary doc has. Anyone have any ideas? Thank you!
1 Responses
1530171 tn?1448129593
You may actually have a connective tissue disorder, which implicates more than what most people assume at first.
Connective tissue integrity is vital for the well functioning all the vessels and organs in the body.
Underlying this may have to do with deficiencies in methylocobalamin B12, methylfolate, iron, vitamin D and minerals.
Standard tests do not reveal accurate status of the bioavailable B12 and folate, so you need separate MMA
testing. Methylocobalamin and methylfolate are also considered the neurological forms of these B vitamins.
You would also benefit from a complete iron panel.
Low Vitamin D could have to do with a few factors, like low cholesterol, high cortisol, VDR polymorhism or inadequate
sun exposure/low D intake. What were you latest D levels?
Do you know there have been a number of studies establishing a relationship between vitamin D levels and kidney disease?
Please include lab range and units of measure.
Can you also calculate your daily protein intake?
You may have a protein deficit-not a deficiency-where your intake is slower than your usage.
Collagen would be in the center of this imbalance.
The WBC  and CBC should be repeated periodically to establish a possible pattern and to monitor levels for safety.
On the pineal cyst, has there been any more recent testing?
Any changes? What was the size of the cyst?
As far as your negative results for  ANA, Lyme, RA titer, TSH, ESR, Anti CCP, you could be seronegative for some and false negative for others.
TSH is NOT a good test for thyroid. Please consider Free T3, Free T4 AND Reverse T3 , thyroid tests. You really want to rule out hypothyroidism, including thyroid resistance.
Please insist on these tests!
Lyme disease as a chronic infection is still... not recognized!
Chances are that your doctors will follow the established guidelines and exercise intentional ignorance, if they have to,
when it comes to chronic Lyme's disease.
This is a very controversial subject to discuss at this time.
I think I gave you enough to consider.
If you have any questions, feel free to post again or to message me directly.
Best wishes,
Niko
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