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Chronic Fatigue Syndrome
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Posted 8/28/2010 4:47 AM (GMT 0)
Hello,

I have chronic/late stage Lyme disease.  I have decided to visit this forum because EBV was quite high in my labwork over a year ago.  I was on a infectious disease Dr's waiting list for over a year. I took to him my labwork and he remarked something about 'chronic mono', as well as Lyme disease which showed on my lab reports.

I realize no one understands all the connections here, but would like to know what you all believe:  Is active/chronic EBV the same as chronic mono, or is chronic EBV Chronic Fatigue Syndrome?

I currently have active Lyme and 2 strains of Babesia infections, as well as high EBV labs. (had mono as a teenager)  In researching CEBV I have found both chronic mono as well as CFS. 

Have also found CEBV linked to MS.

What do you all know and/or believe? 

Posted 9/2/2010 9:58 PM (GMT 0)
I believe that chronic mono is chronic ebv; mono is from the ebv virus - same thing, just different title. CFS is not EBV; although, like I explained in another similar/ebv post, EBV can and often is related to, as are other viral and bacterial infections, causative of CFS.

Yes, all of these bacterial and viral infections do often go hand in hand.

I have to ask you, I realize this is highly controversial, but..........were your lyme tests done through igenex and were they positive? If so, Igenex clearly states on their lab results that positive lyme results can be wrong due to a patients positive ebv status. With that said, I believe that everyone with chronic or long standing ebv should treat with antivirals.

Posted 9/3/2010 4:16 AM (GMT 0)
OneWeary,

NO, I did not test thru Igenex. I tested thru Quest, and then a CD57 thru Labcorps. My EBV was tested thru Quest and results are quite high, high enough for my new Lyme Dr to comment on and diagnose. But I am sure that he said 'Chronic Mono'. I am going to remember to ask him for more specifics at next visit.

At this point, there is no question that I have Lyme disease, which would be late stage or chronic, because the known bite was over 3 yrs ago, followed by mild symtoms, which worsened. A very recent lab test also shows Babesia -- at least 2 active strains.

Yes, Weary Chick, I am learning in all my research that there are all these 'links' between one infection/disease w/ so many others. And no one has yet, to my knowledge, learned what causes what.

When infected w/ Lyme, it is entirely possible, in fact often IS that the person contracted Lyme and then later came down w/ certain viruses and infections because of immunity issues caused by Lyme.

On the other hand, it is entirely possible that most peoples' bodies can fight Lyme and win. So, again, it is entirely possible that healthy people w/ strong immune systems who are exposed to Lyme , manage to fight it off and that is 'end of story.'

All that aside, I was hoping to learn the general consensus here: Is 'chronic' EBV mono or CFS? Or is it just simply found in blood tests?

Shew! There are TOO many questions!
Posted 9/3/2010 1:24 PM (GMT 0)
+Lyme

How are you treating the lyme? Are you seeing any positive changes?

Have you ever treated with antivirals? How did you or did you treat your Parvo diagnosis? Parvo/Fifth's Disease is hideous in itself. That virus alone is almost exactly like lyme symptomatically.

I think asking what caused what is like asking what came first, the chicken or the egg? No one really knows - or perhaps  just a few; maybe yourself since you had a "known bite over 3 years ago". Many chronically ill sufferers don't have that to "pin point".

And yes, there are some who do fight off all of the nasty viral and bacterial infections with seemingly ease.  Again, no one really knows the whys or hows to that either. Genetics, Environment, who really knows?

As for your question....Is 'chronic' EBV mono or CFS? Or is it just simply found in blood tests?  From my research (and I have been doing it for years), I believe chronic EBV is mono, (they are one and the same - mononucleosis is derived from the epstein barr virus) which over time can, but not always, become CFS among other things. With the limited (limited as opposed to other ailments) research and funding for studies on ebv and other chronic viral infections; those that acknowlege it (MD's, ND's, scientists, etc) are now treating with antivirals in an attempt to stop the progression from ebv continuing on to other "things". As in many "forums' there is much breath holding in anticipation of the XMRV studies and how they all inter-relate. 

Posted 9/6/2010 4:21 PM (GMT 0)
WearyChick -- Hey, don't I know you from the Lyme board? Haven't been there lately and need to get by there today!

I probably should remove the Parvo virus from my signature. I don't understand why, but my LLMD said he didn't think my numbers were high enough to prove this virus. However, they are high, out of range and when I went searching, found my numbers are high enough to show reactivation.

Right now, my LLMD is only treating the Lyme, w/ high doses of Augmentin. He is basing this on the fact that I experienced a lot of improvement last year after 2 months of high doses of Amoxicillin. He is not even treating my babesia yet, as I have been feeling so poorly -- he believes I may be herxing and does not want to add 'insult to injury' w/ babs herxes.

I don't know why he is not treating the CEBV and will ask at my next consult. As I said in another post, perhaps he believes kicking Lyme will allow my body to kick the EBV, I don't know.

I am looking into LDN -- he is willing to prescribe it if I locate a compounding pharmacy and if my insurance will cover. I still have to look into all of that.

Well, Weary Chick -- since my doc called this 'chronic mono' and because of your statements, this is what I'll accept. I am very scared about this, along w/ the HHV6 and all that follows, but hope and pray that even tho my Lyme is late stage, it is just over 3 yrs old. TONS of people have had it for many more years.

There is still a question about some type of TBI I got in 1972, but doc says it is impossible to know what it was now or if it is currently having any effect.
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