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.

[PlateletGal]

I'm glad you two have hooked up. I just got back from the allergy forum and read all of these posts from women who have had postpartum hives. Here's a link to the discussion:

http://www.medhelp.org/posts/show/443183

I am very concerned about the growing number of people, especially children, who have food allergies and other conditions. Autism is on the rise... allergies (autoimmune) are rising and yet many physicians don't seem too concerned about this. Some physicians just keep prescribing drugs. I have been seeking out the physicians who do know about this and have some answers.

[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 ect.

Hubby described limb shaking

The last three symptoms are when the simple partial seizures got more severe, eventually leading to the grand mal seizures

After the grand mal seizures I'd sleep a deep sleep that I could not be woken up from for about a half hour. Then I'd sleep for another hour or so, but would still be tired

All my EEG activity was normal but they never caught one of the seizures

I cut soy out years ago because it seemed to make them worse. I cut wheat, dairy and corn out and started eating 8 to 10 cloves of garlic a day, using apple cider vinegar and went 9 days without any seizure activity. This was broken by a grand mal seizure while making dinner. I finally agreed to tegretol therapy. I know chewing on cloves of garlic sounds crazy, but it seems to help the most. I think it may fight the EBV infection somehow.

Get a neurologist to look at you and if possible get an inpatient EEG workup to catch one of these seizures. It took years before my doctors even knew what this was. It was not vertigo, it was not inner ear problems (which is what I'd originally was diagnosed with, I went years with these seizures and was told it was inner ear problems) It was seizure activity that at any moment could have put my children in danger. I drove all over the place by myself while having these "spells" I hate to think what could have happened if I had my grand mal seizure while driving my kids around!

I found this site to be very helpful, especially the virus info. http://www.dogtorj.com/

I can certainly relate to the doctors not knowing what is going on with you. My PCP said I needed a psych consult. All I can say is if the only tool you have is a hammer, every problem looks like a nail. They simply don't know what is going on with me and since all their tests don't "show" anything (except that is for the ACTIVE EBV INFECTION!!!!, Thyroid nodules, Elevated Liver functions, Low Vitamin D levels, etc. that they choose to ignore) they say I must need some psych drugs.

Doctor, heal thy self ... and leave me the heck alone.


Christine Emmick
Freelance Writer for the Writers Research Group, LLC

[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.

[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.

[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.

[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]

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]

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

[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.