Suspicious labs and extensive family history - Is it autoimmune or mono?

[jrwinney]

To make this easier, I will break everything down then ask my questions.
Family history: Father with RA; Mother with SLE, hoshi, sjorgrens, RA; Grandmother with hoshi; Aunt and cousin with hoshi; cousin with RA, and a niece who is getting worked up and has a high ANA.

My symptoms: Foot drop and parasthesia for 3 months (I was only 27), hand numbness x1 week several times, joint pain, migraines, hair loss, rapid weight loss and gain, fogginess, depression, and more.

My labs:
**ANA - 1:180 (speckled)
TSH - 1.42
T4 - 10.6
FT4 - 1.26
FT3 - 3.57
Thyroid Peroxidase - 10 (normal)
**Thyroglobulin - 8.7 (norm is <1)
Differential - High atypical lymphs (6%) - all else within normal limits
LFTs - Normal
Urine - Few epithelial cells, small amorphous, rare WBC, no blood
Reumatoid factor - Negative
**EBV
Vca-IgM - Negative
Ea-IgG - Negative
**Vca-IgG - High (110 - normal is 0-17.9)
Na-Abs IgG - Negative
Western Blot - Negative, only P41 antibody present.

Based on this, my doctor is convinced I have mono. The concern is that only the VCA IgG was positive (and very high), which she has never seen before. I have no other symptoms of mono other than the fatigue. Has anyone had just the VCA IgG positive and that high and had it due to something else - likely autoimmune? Any advice or guidance is appreciated, because at this point I am just being treated as if it is mono and was told to sleep as much as possible.

[TheLightSeeker]

Hey jrwinney,
Did you mention to him/her the lack of high elevations of IgM CMV or toxoplasmosis titers in your labs?
If these is all ruled out (found to be low to normal), the rheumy is likely WRONG!

Again, how much of a difference would this could make, considering the fact that most Rheumies consider themselves pretty high on the medical hierarchy ladder!

The muscle involvement may be influenced to a degree by lowering the effects of tartaric acid-a muscle & tissue toxin which causes fatigue.
It is antagonistic to malic acid which is instrumental in the Krebs cycle
( a series of biochemical reactions in the body to produce energy ).
By reducing carbs substantially and taking organic raw apple cider vinegar
1-2 Tablespoons daily(the best source for malic acid), you will be able to achieve this over 2-3 months.
One of the culprits could be gluten, so a gluten-free diet as a trial for a few weeks may be warranted.
Note that gluten is many products and not listed as gluten as it has many different aliases!
Do an online search for the list.
Has to do with profits and greed, since starch is a very inexpensive filler/bonding  ingredient.
Soups, sauces, condiments, glues (envelopes), shampoo,cosmetics,
creams, playdough... may contain gluten!

Try to be thorough with everything and don't rely only on a specialist's opinion.
You risk getting stuck in medical limbo, because nobody takes the time to connect the dots!

Best,
Niko

[TheLightSeeker]

I had to look deeper into this, as from what I know, the EBV testing you had is almost 100% accurate.
So I found out the following:
"Rarely, cross-reactivity occurs between VCA antibodies to EBV and those to CMV or toxoplasmosis. False-positive cross-reactivity to specific EBV antibodies is extremely rare. Such patients have high elevations of IgM CMV or toxoplasmosis titers, which helps to differentiate between the primary infectious agent and the serological cross-reactivity resulting in a false-positive test result."
---Author:Burke A Cunha, MD Professor of Medicine, State University of New York School of Medicine at Stony Brook; Chief, Infectious Disease Division, Winthrop-University Hospital--
I hope this helps,
Niko

[jrwinney]

I finally got in to see a rheumatologist. Now my ANA is negative, but my creatinine kinase and CRP are high, so he is thinking there is some kind of muscle involvement. Like always, wait a month and re-test labs. The waiting game in autoimmune disorders is torture. This fatigue is really affecting my daily life and I feel like I'm getting nowhere. As far as the EBV goes, he said Lupus could cause a false positive, but he thinks it was just a prior exposure and not an active infection.

[jrwinney]

Is it possible that the EBV was positive because of something else underlying causing it to have a false positive? I really don't think I had/have mono. I have no symptoms but fatigue. I also have horrible joint pain everywhere all of a sudden.

[TheLightSeeker]

The positive EA-IgG  indicates active EBV and the virus is still replicating.
So according to the EBV test ( recent and new) results the logical conclusion is : EBV reactivation.
And guess what?
Stress is a well known predictor of EBV reactivation,
so you might want to get your stress hormone levels
tested and also rule out Hashimoto's.( healing and repairs in the cell is an electrical process which requires energy to run and in hashimoto's energy is low, even lower when the adrenals downregulate thyroid function -secondary hypothyroidism- for ...adrenal recovery.
(Did you try Dr Barnes Basal Temperature Test?
It could be a life saver. I can explain if you want)
You can see now all this affects your recovery and how everything is interconnected.
The ongoing biological stress (hidden) added to mental stress could severely affect your adrenals.
It might be also wise to look into a comprehensive stress
reduction regimen.
This is a field I'm very familiar with, as I.m a Reiki Master,
Hypnotherapist, EFT Advanced  Practitioner...
If you need some tips, let me know. I have come up with a few short cuts that really work!
OK, I can go on forever here. I hope I did not bore you or
confuse you.
Best wishes,
Niko

[jrwinney]

I was tested for EBV again. This time the VCA-IgG was even higher (138) and the Ea-IgG is positive now too (11.3). So I guess it was/is an active EBV infection? I'm not sold, but we will see what my doc says when I go in to go over the results.

[jrwinney]

Oops! My EBNA was <18, so normal.  I plan on getting a second opinion on the lymes and have EBV labs ordered to be drawn in 2 weeks.

I know getting a diagnosis is a process, it took my mother 5 years, but I truly think she was stumped so just threw a diagnosis at me to keep me content until the next round of blood tests in a few weeks. She specifically said "if I sent you to a rheumatologist right now, they would say you have mono and tell you to come back in 6 months, so lets see what the labs say next time."

I will look into Dr. Barnes basal temp test too, thanks!

[TheLightSeeker]

Wow, talk about conflicting & suspicious labs.

1.I would ask to redo the EBV testing. (You gave no EBNA numberBTW)
EBV is not as simple as it seems to diagnose.

2.You could have Hashi's, since your  Anti-thyroglobulin is so high.
The other thyroid labs show normal, likely due to the fact that hashi's can at times"cycle" from hypo to euthyroid to hyper.
Start taking your basal temperature every morning according to Dr. Barnes
basal temperature test. A healthy before-rising morning basal temp should be between 97.8 – 98.2, using a glass thermometer underarm for 10 full minutes
Higher indicates hyperthyroid and lower indicates hypothyroid (averaged over many readings) Just do search for more details.

3. Find a good LLMD to help you rule out Lymes.
Many LLMDs will  consider P41 IgG and your symptoms as very probable for Lyme's Disease and to warrant a 3-4  week trial of antibiotics and then get  retested (IGeneX Labs).
The clue  it's Lymes is when you start herxing during and post abx.

Best wishes.
Niko