EBV, mono, diabetes?

[stevenhorr]

Hello everyone,

I may have posted here many years ago, but have become so frustrated after years of diligent investigating that I just learned to live with my symptoms. However, my health has taken a turn for the worse. I started seeing a CFS specialist at last, and while she said I should treat my symptom set as CFS, she couldn't give me an official diagnosis because I didn't exactly meet every criterion for a diagnosis. Anyway, her testing did provide me with a few clues as to what is wrong. She told me I should stay away from gluten, dairy, and fructose (which cause IBS and lead to other problems). This has helped somewhat. She also told me that my blood tests showed that my body was producing antibodies (I think) for mononucleosis, which I had when I when I was 17 (I am 40 now!). Anyway, I was diagnosed with Type 1 Diabetes (adult onset) a few years ago, too. But my main problem is this: I catch every sickness possible it seems, and it takes me weeks - sometimes months - to recover. And I suffer sometimes severe flu-like symptoms following even the lightest of physical exercise. Right now I have had laryngitis for a month (which makes my job as a substitute teacher pretty much impossible) and feel much like I did when I first developed my CFS like symptoms (which followed a bout of strep throat, and resulted in me having zero exercise tolerance, among other things). I am on my second round of antibiotics and feel no better - perhaps worse - than I did a month ago! It seems I have no immune system left.

So I guess I am just wondering if anyone out there knows anything about chronic mono / EBV and if and how it can be treated, or how it relates to CFS? Or if anyone can help me connect the dots based on what little I've explained here? Any insights, leads, suggestions, or encouragements appreciated.

Thanks in advance,
Steve

 

[GracieJ]

Welcome to the forums! So sorry, Steve, that you are going through this.

Your story sounds a lot like many on this site. Come back often and start reading... you'll find a lot of good info.

ME/CFS in my case started after mononucleosis, coming on top of many years of fibromyalgia. I called the whole thing a bizarre alternative universe for years, just never seemed like life came back to anything normal again until I could accept the new normal.

Most people show EBV antibodies, so doctors tend to discount it as nothing. It is significant, however, as many report mono before coming down with a full spectrum of ME/CFS symptoms. How it fits into the puzzle is not entirely known yet, but there is plenty of sensible information coming together on that topic that is well worth reading.

You may find the International Consensus Criteria a good read as well.
http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/abstract
Scroll down, you will find links to the full paper and to download the full pdf.

Best to you!

 

[SickOfSickness]

Welcome.

Antivirals can help.

There's a lot of info on this. http://www.cebv.org/ is one place.

 

[Ema]

If you are prone to constant infections, I would strongly consider getting your total IgG and subclasses tested to see if you have a primary immunodeficiency. This is reasonably common in people with ME/CFS yet hardly ever tested.

http://primaryimmune.org/about-primary-immunodeficiency-diseases

 

[*GG*]

Welcome to the forum!

GG

PS How are your Vitamin D levels? Dr Mercola suggests a mininum of 60 or 70 ng/ml? Have you heard of Low Dose Naltrexone (LDN), lots of people have had success with it, many have not, but it's not expensive and has few side effects. The only problem with LDN is finding a Dr to prescribe, but with some "leg work" you should be able to find someone to prescribe, some people actually order it for themselves from online pharmacies.

 

[stevenhorr]

Thanks, everybody, for the information and kind words. I appreciate the leads and will have to get busy (again) catching up on my learning!

 

[August59]

See if you can get your HHV-6 tested. If it is really high I think the only av that effects HHV-6 is Valcyte. You may have to take Valcyte for several months and see if HHV-6 comes down. If it does you will probably be switched to a much cheaper av like Valtrex or maybe Immunovir, but I can't remember if it is effective against EBV or not.
Good Luck!!

 

[snowathlete]

If you are prone to constant infections, I would strongly consider getting your total IgG and subclasses tested to see if you have a primary immunodeficiency. This is reasonably common in people with ME/CFS yet hardly ever tested.

http://primaryimmune.org/about-primary-immunodeficiency-diseases

That's really interesting Ema. I'm wondering how best it would be to investigate this and get it ruled out or confirmed?

To answer the OP, I had mono when I was 14 and caught everything after that for a number of years. After that my immune system improved I think but continued having difficulties until I got ME badly many years later. It's something that does happen with EBV. Whether it causes ME or mot is a different question, though some, like me, suspect it may be the cause.
There is a lot of info on these forums regarding testing and treatments of EBV and other pathogens, so might be worth you reading that stuff.

 

[Ema]

Total IgG and subclasses is a simple blood test. You can even order it yourself in most states. I think PrivateMDlabs.com offers it for about $160. I think it would be a great step for you.

 

[LiveAgain]

Most people show EBV antibodies, so doctors tend to discount it as nothing. It is significant, however, as many report mono before coming down with a full spectrum of ME/CFS symptoms.

I'm confused about this. One of the sole reasons my Dr. steered me in the direction of CFS is because of my EBV results. He said the fact that the "early antigen" portion was high indicates active infection. The lab reports it as chronic/active. I also had this result back in the late 90's around when my illness began. Since this is one of the few positives I've gotten, it's tempting to run with it, but I can't help but question whether it is actually meaningful. I tried anti-virals for a bit, but my dizziness and cognitive problems got so much worse I had to stop. So my question is - when it's said that healthy people show these antibodies, do they only show antibodies for PAST infection or do they get the positive EA too?

 

[UWFgirl]

Hi, I'm new to this site. I was told by the mayo, I might have chronic relapsing fatigue. I guess that means CFS. Whatever it is though, is definitely related to Mono, I had when I was 22( about 8 years ago). I had neurologic symptoms from the very beginning of EBV infection and hair loss for the past 8 years . Finally I started to feel normal again sometime after a year. Then a couple episodes in the last 7 years came where I was fatigued, tingling, vision slightly blurred, got better. Than August of last year was the worst case of any symptoms where I had twitching, limb jerks, blurred vision, shortness of breath, electricity in legs, fatigue and so on. It seems that my symptoms have let up a lot going into this 6 month. I hope remission will come soon. New to this whole disease still and not sure what to expect. Every time I get my EBV titer checked, I have high antibodies too.

 

[Wayne]

symptoms where I had twitching, limb jerks, blurred vision, shortness of breath, electricity in legs, fatigue and so on.

Hi @UWFgirl,

Those actually sound like symptoms of an anticholinergic drug. Are you by any chance taking any kind of medication, such as anti-depressants or anti-histamines, that have anticholinergic properties?
​

 

[JES]

@Wayne FYI, this is a five year old thread and the forum user you replied to hasn't been online since 2013.