Now I know why xPAP wasn't working...I have Epstein Barr

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Kiralynx
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Re: Now I know why xPAP wasn't working...I have Epstein Barr

Post by Kiralynx » Sun Sep 27, 2009 9:39 pm

lazyace wrote:I'm glad to hear your hubby recovered! It's so confusing because some docs are telling me that EBV recovery is rarely more than two months. Because my infection is either active or very recent, it makes it almost impossible to discern whether this has been the cause for the last seven months, especially if it is true that it only takes two months to recover. I have been reading about cases like your husband's, where folks were down for 6-12 months. Did he ever get vitamin B-12 shots? I have read that some people with EBV have gotten them. I take a multivitamin but maybe that isn't enough?
No, my husband never got B12 shots, although those can (I've learned) be helpful for fatigue, especially if you also have gut issues.

He takes a 100mg B complex, and a high potency multi-vitamin. I can ask him to write down what-all he's taking now, if you are interested.

At one point, about 4 months in, he was at the doc and they took his blood pressure. It was something like 70/40, and my husband observed that there were probably corpses with higher blood pressure. Realize this was after he'd walked briskly into the office....!

Just a recommendation: take your B12 first thing in the morning. It's a melatonin antagonist, and if you take it at night, it will give you insomnia like the dickens.

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Slinky
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Re: Now I know why xPAP wasn't working...I have Epstein Barr

Post by Slinky » Mon Sep 28, 2009 12:19 am

Archway Coconut Maccaroon cookies are known to help many w/Crohn's disease. Seriously! Has to be the Archway brand.

Probably 10 years ago I read Teitlebaum's book, From Fatigued to Fantastic. At the time it was the best book out there I thought for FM and CFS.

Dr Martin Lerner in Bloomfield Hills or Beverly Hills, Michigan was treating CFS patients w/EBV and/or CMV w/IV antivirals followed by oral antivirals. I have no idea how he is treating now. He was working out of or affiliated w/William Beaumont hospital in the Detroit, Michigan area. (Hey! Once you are south of Pontiac, its the Detroit area!).

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Last edited by Slinky on Mon Sep 28, 2009 9:49 am, edited 1 time in total.
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howkim
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Re: Now I know why xPAP wasn't working...I have Epstein Barr

Post by howkim » Mon Sep 28, 2009 8:59 am

Hawthorne wrote: Not sure why the "no alcohol".
Because Mono affects the liver quite significantly.

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Re: Now I know why xPAP wasn't working...I have Epstein Barr

Post by Hawthorne » Mon Sep 28, 2009 10:54 am

Ah yes! I remember that now! It's been so long since I had it that I had forgotten.

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Re: Now I know why xPAP wasn't working...I have Epstein Barr

Post by raggedykat » Mon Sep 28, 2009 12:46 pm

I just wish I knew whether this is the beginning or the end. I need something positive right now!
I came down with what I thought at the time was the flu in the spring of 2000. By fall I still felt like I had the flu so I finally went to the doctor and was diagnosed with EB. I got the B12 shoots and also took Tamaflu(sp?). For about a year I would have spells where I felt really run down but then it cleared up and I don't feel like it is affecting me now. Eight years later when I was diagnosed with the 3rd stage block in my hearts electrical system that required a pacemaker I asked the doctor if my EB could be the cause. He laughed and said no but that EB was the cause of a lot of grief for the medical community. I have read some papers online that suggest that EB could cause problems with heart rhythms.
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Re: Now I know why xPAP wasn't working...I have Epstein Barr

Post by twokatmew » Mon Sep 28, 2009 12:49 pm

Slinky wrote:Archway Coconut Maccaroon cookies are known to help many w/Crohn's disease. Seriously! Has to be the Archway brand.
I've heard this too. Even tried 'em for a while. Don't recall noticing any difference though. Any idea where this comes from?

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Re: Now I know why xPAP wasn't working...I have Epstein Barr

Post by Slinky » Mon Sep 28, 2009 1:06 pm

Not on the insistence of the Archway brand. However, there actually are some scientific studies of the benefit of coconut, specifically the oils if I remember correctly, for IBD, especially Crohn's. There was some discussion that Archway persists in usuing pure coconut oil whilst some others use other or additional oils in their macaroons. Archway can be difficult to find in our area now w/the advent of the dang big chain grocers and the squeezing out of the good regional distributors and loss of independent or small regional chain grocers. I DETEST Kroger and won't buy groceries at WalMart either altho I do occasionally shop the rest of WalMart. We pretty much shop IGA and/or Spartan stores as in our area they are pretty much locally owned and Spartan or IGA are their distributors. I don't care for either brand of foods but they carry the name brands we like too.

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lazyace
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Re: Now I know why xPAP wasn't working...I have Epstein Barr

Post by lazyace » Mon Sep 28, 2009 7:49 pm

Slinky wrote:Archway Coconut Maccaroon cookies are known to help many w/Crohn's disease. Seriously! Has to be the Archway brand.

Probably 10 years ago I read Teitlebaum's book, From Fatigued to Fantastic. At the time it was the best book out there I thought for FM and CFS.

Dr Martin Lerner in Bloomfield Hills or Beverly Hills, Michigan was treating CFS patients w/EBV and/or CMV w/IV antivirals followed by oral antivirals. I have no idea how he is treating now. He was working out of or affiliated w/William Beaumont hospital in the Detroit, Michigan area. (Hey! Once you are south of Pontiac, its the Detroit area!).


I just found some info on Dr. Lerner and watched a video that Beaumont did regarding a presentation he did for their other physicians. He may be on to something. However, from what I have read the use of antivirals is having only limited success, with some significant side effects.
raggedykat wrote:

I came down with what I thought at the time was the flu in the spring of 2000. By fall I still felt like I had the flu so I finally went to the doctor and was diagnosed with EB. I got the B12 shoots and also took Tamaflu(sp?). For about a year I would have spells where I felt really run down but then it cleared up and I don't feel like it is affecting me now. Eight years later when I was diagnosed with the 3rd stage block in my hearts electrical system that required a pacemaker I asked the doctor if my EB could be the cause. He laughed and said no but that EB was the cause of a lot of grief for the medical community. I have read some papers online that suggest that EB could cause problems with heart rhythms.


VERY interesting! May I ask how old you were when you were diagnosed? I have read that it is more serious as you age. Getting it at 41 is pretty unusual. I too have read that EB can effect the heart. In fact, Dr. Lerner from Michigan (mentioned above) has been able demonstrate through the use of Holter monitors that EB sufferers almost always have rhythm issues.

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Re: Now I know why xPAP wasn't working...I have Epstein Barr

Post by Muse-Inc » Mon Sep 28, 2009 9:31 pm

Hey, LA, found this site looking for something else (doc suggested today that I get the shingles vaccine... suspecting it was in the herpes family, I was checking to see is it also required arginine to replicate). Might be worth checking out.http://www.lauricidin.com/micro.asp

Note that this is effective against EBV in the lab.
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lazyace
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Re: Now I know why xPAP wasn't working...I have Epstein Barr

Post by lazyace » Tue Sep 29, 2009 9:27 am

Muse-Inc wrote:Hey, LA, found this site looking for something else (doc suggested today that I get the shingles vaccine... suspecting it was in the herpes family, I was checking to see is it also required arginine to replicate). Might be worth checking out.http://www.lauricidin.com/micro.asp

Note that this is effective against EBV in the lab.
Thanks Muse!

I just visited the link and will be looking into this.

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raggedykat
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Re: Now I know why xPAP wasn't working...I have Epstein Barr

Post by raggedykat » Tue Sep 29, 2009 9:52 am

Lazyace - I was 49 at the time. Something I just thought of, I had mono when I was in high school. Does that make you susceptible to EB?
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lazyace
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Re: Now I know why xPAP wasn't working...I have Epstein Barr

Post by lazyace » Tue Sep 29, 2009 11:03 am

raggedykat wrote:Lazyace - I was 49 at the time. Something I just thought of, I had mono when I was in high school. Does that make you susceptible to EB?
From what I understand, EB is one of three viruses that causes mono, but people commonly assume EB and mono are the same thing. Although, EB is probably the most of the viruses to cause mono. If you had mono in high school, it is likely a case that one of three things occurred: 1) the original infection was in fact EB, and the virus reactivated at 49. 2) Cytomegolavirus (CMT) caused the original infection and EB caused the one at 49. 3) Human Herpes Virus 6 (HHV-6) caused the original infection and EB caused the one at 49.

This assumes that you were in fact positive for the EBV VCA IgM anitbody at 49. Unfortunately, many clinicians use a less specific test called a Monospot, which from what I understand doesn't necessarily differentiate the actual active virus.

Once you have been exposed to any of the aforementioned viruses (they are all of the herpes family), they remain in your system for life. All can reactivate during periods of stress or with immune system deficiencies. When/if they do reactivate it is often much worse than the original exposure, and can linger a lot longer.