reactive EBV, Elev LFTs, seizures, hair, weight loss, thyroid nodules, light stool

[spunkymom]

I have all of the above symptoms plus a strange hive like rash that comes and goes. I took dairy and wheat out of my diet and have seen marked improvement in seizure activity, stool color, uirine color and rash, and a complete turn around in weight loss and noticed hair regrowth. Not really any symptoms of CFS, but sometimes just need to take a 2 hour nap, especailly after physical activity.

History:
8 years ago - Extreme fatigue with RS pain during first pregnancy
5 years ago - "dizzy spells" later found out to be simple partial (petit mal) seizures Elev LFTs found
3 years ago - second child born more "dizzy spells," notice soy increases incidence of "dizzy spells" cut out soy
2 years ago - third child born "dizzy spells (seizures)," 125 lb. weight loss starts and goes over next 11 months, hair starts falling out
7 months ago - First grand mal seizure, "dizzy spells" finally diagnosed as petit mal (simple partial) seizures, reactivated EBV infection found, low Vit D found, small thyriod nodules found (too small to biopsy), liver biopsy negative, all other scans (CT, MRI, chest Xray) negaitve
5 months ago - Cut wheat, dairy and corn
2 months ago - reintoduced corn, no ill effects
1 month ago - reintroduced dairy (cheese, ice cream), tastes bad, stomach ache and "dizzy" feeling (seizure?) cut dairy immediatly

What do I have? Can anyone tell me? I've been to 2 GPs, 2 gastro doctors, one allergy, one endocrine, one hemotologist, and a dermatologist and no one can tell me anything, that is except that I need a phsyc consult.

[spunkymom]

At 5 month mark, when I cut the wheat, corn and dairy, I noted a marked improvement in my appetite, I stopped loosing weight, and my seizures went from 2 a day down to 1 a WEEK. I started taking tegretol and have not had a seizure for the last 3 months. The rash went away and has only been back in a very mild form.

[spunkymom]

I have had difficulty swallowing during these last two years and the test showed nothing. (barium swallow)

[PlateletGal]

The difficulty swallowing could be due to thyroid problems, including thyroid nodules.

There are many women such as yourself who have had health problems after giving childbirth. Do you have any other symptoms you could list (no matter how bizarre they seem ?)  Also, do you feel better when you are pregnant ?

[spunkymom]

YES!!! I seem to have less seizures (none to my recollection) while pregnant, but they seemed to get worse after each pregancy. Brain fog and a general slowing down of cognative ability. I was a drafter designer while pregnant with my first and I remeber having trouble calculating trig functions, something I did with ease before hand. I would also go to someone's office and forgot why I went when I got there. I attributed this all to pregnancy brain.

Other than that I really cannot list anything else constant. Thanks for asking the question.

[PlateletGal]

Hi Spunkymom,

I'm getting ready to go out to breakfast right now, but after I get back... I will find some links to other posts from other women on MedHelp and another website who became ill after being pregnant. One of them is being treated on the same research protocol that I'm on.

If you would like, I will zip all of this information to you via PM (private message), so you can review it. Perhaps you will want to contact the other posters ? I've found that it is so nice to be able to relate to others who have shared the same experiences.

[PlateletGal]

P.S. ~ Often many CFS (AKA: Chronic EBV) patients will have food allergies due to immune dysfunction and feel better when they are pregnant (at least the women anyway ; ^ )  ) so I'm happy that you posted here... as I can relate.

[akwhorley]

It seems like you're a lot further along in the research phase than I am. I just had my daughter 9 months ago, and since then, things have been...off.

I get crazy numb/tingling spells in my hands and feet, what seems like allergic reactions (anaphylaxic reaction, hives, etc.), except I keep becoming "allergic" to more foods on an almost daily basis. But then (this is the kicker), when I went in for allergy testing, all of my blood work came back NEGATIVE!  My allergist then told me I made the whole thing up....awesome.

I've also started having more...spells where I just crash. I'd been attributing this to low blood sugar, but when I was tested for diabetes about 18 months ago, it came back negative too. Sometimes I just get really zonked and dizzy--I have to sit down, or nap.

I just don't know what kind of doctor to turn to next! I hate that I don't have the energy I once did. If I push it too hard now, I simply can't do anything else. It's also kind of scary and anxiety inducing not to know what's going on, or to have anyone take me seriously.

[spunkymom]

I was having one or two "dizzy spells" a day. These were simple partial seizures. Let me describe them

A sudden onset "dizzy" feeling. Like I need to sit down,

Tired afterward, I'd lay around all day if I had lots of them

Tingling sensation in my left hand and left foot

Sometimes visual changes, such as flashing lights, tilting sensation