Dan Paterson Olso's web EBV

[heapsreal]

Hi,
I have only just started reading Olso's web, thanks to Alex. It might be hard to believe because i have been around these cfs forums for a few years now and know about Olso's web but never got to it, read snippets here and there off the internet but ??

Anyway the first 2 chapters really struck a cord, the rest of the book probably will too but, his original cfs patients he tested for ebv had very high EBV titres but negative to EBNA which is suppose to keep EBV latent and was found undetected in Pattersons patients. In australia i cant get titres measured but originally had a positive to ebv but a test last year showed negative to EBNA which is usuppose to be life long titres. It also mentions white blood cells are down which my neutrophils are often down.

He does state that at the time they were calling it chronic ebv but thought it was due to the immune system and a guru he consulted with who was the best at the time for testing these different ebv titres said that he only sees it in children with aids and a small number of patients with rare immune defiencies????? Is this XMRV.

I also struggle with the idea that alot of docs at the time didnt have alot of patients in the past come to them for fatigue, i think fatigue makes up alot of the clientel of the average doctor these days and i think cfs is very prevelent these days and people dont know they have it unless they get it alot more severe.

Are there others who have had mono from ebv but negative to EBNA???? ALot of people say that there docs tell them they are negative to ebv but i wonder if they are getting the riht tests done, also people tended to see these results after a few months of being sick so maybe takes a short while for this to occur.

I think the ebv reactivation is just showing some underlying immune problem, mm.

cheers!!!

 

[lansbergen]

Hi, I think the ebv reactivation is just showing some underlying immune problem, mm.

Did you see this?

Retroviral infection in vivo requires an immune escape virulence factor encrypted in the envelope
protein of oncoretroviruses

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2840525/pdf/pnas.200913122.pdf

In conclusion, our work demonstrates the critical role of Env-induced immunosuppression for retrovirus propagation in vivo and identifies a unique definite target for antiretroviral therapies and vaccine strategies, also characterized in the human T-cell leukemia virus (HTLV) and xenotropicmurine leukemia virus-related virus (XMRV) retroviruses,

 

[Grape Funk]

After my original onset of mono(Sept 07), i had gotten my titers tested about 4 months after(Jan 08). My EA was negative but IgM(1.92), VCA IGG(3.9), and IGG NA(4.2) were all high. The numbers shown are all on the scale of <1 neg, 1-1.10 neutral,1.10< positive.

 

[liquid sky]

Hi Heapsreal, I am just reading Olser's Web also. I'm only a hundred pages into it, but it is full of info that's illuminating. The punctuate bright lesions in the brain fascinate me, as I have over 70 of them on my MRI.

It really sounds like an infectious cause is the most likely answer.

 

[heapsreal]

Lansberg thanks for that info, its definately a link between these herpes viruses and retroviruses. Maybe why dr lerner seems to get partial responses from av's and many of us improve on av's but cant quite get there. Maybe its going to take a combo of drugs ie av's and arv's for those who are xmrv and also have reactive herpes infections.

Grape funk, it would be interesting to see your ebv titre results in another year or 2. I cant get titre levels just positive or negative, but cd8 lymphs are always high which happens in ebv/cmv infections.

Liquid sky, yes its interesting reading, but makes me shake my head at why this wasnt all sorted out along time ago and i havent even got to the section of defriatus and retroviruses yet.

cheers!!!

 

[August59]

Hi heapsreal - I have never had mono that I can remember, so I must have been exposed when I was young (approx. 40 years ago). I was tested for CMV, EBV (EA, VCA and EBNA) and HHV-6 in 2008. CMV both IgG and IgM were negative. EBV and HHV-6 as follows:

EBV EA IgG = 168 (Pos. >120)
EBV VCA IgG = 2880 (Pos. >120). Started Valcyte and 3 months later the VCA = 3246??. I also had a fair degree of improvement in energy and brain fog. I was in severe pain at this point and it did not improve while on Valcyte.
EBV NA IgG = 1214 (Pos. >120)
HHV-6 IgG, Quant. = 1:160 (Pos. =>160) Note: 4-fold rises in titer are suggestive of either recent, primary, or reeactivated infection. The presense of elevated titers to HHV-6 in the absense of responses to HAV, HBV, CMV and EBV suggest that titer resultsare associated with high specificity. Side Note: For research only???

My kidneys were tested every 2 weeks due to my GFR was running about 55 prior to Valcyte and it did not change while on Valcyte.

My monocytes, both regular and absolute, are always low or non existent. My WBC (White Blood Count??) is always low or at the low end of normal range.

I stopped Valcyte because my thyroid was getting out of sync and want to get it normalized before continuing the Valcyte, but my funds ran dry and that ended that. There was something in Dr. Montoya's study that commented about response to Valcyte was less likely with hypothyroidism??

 

[heapsreal]

hi aug59,
So do you think the hhv6 may have cause your immune dysfunction and then ebv titres have risen?? I take it you were negative to cmv. Although valtrex has little effect on hhv6 but cheap, have u considered trying valtrex for some improvement maybe??

cheers!!!

 

[heapsreal]

I think im getting PEM just trying to read Olso's web, hard to put down when reading it, plus the amount of times i have to reread a sentence, by the end i will have read it 3 times but will be lucky to remember a 1/3 of it, lol. The frustration that cheney and peterson went through even though they have all these abnormal test results of patients, i think i went through something similar when i have gone to so called specialists, when u have copies of blood tests in your hands showing high lymphocyte counts and immunologist say its nothing, even when u tell them they have been like this for years. Its like nobody wants to acknowledge cfs, only those effected by it or have close relative that has cfs. Why would someone pretend to have an illness that nobody cares about, its got me stumped?? It would be very hard work with someone without cfs to pretend they have cfs day after day etc, they would soon get sick of it, i know im sick of it but i cant walk away from it.

Whinge whinge whinge, im sick of whinging to myself, im having one of those down in the dump weeks, post 'crash' blues, just flat, too much time to think how this sucks.
Are the last couple of pages of olso's web have a cure, if so i might just skip to those pages, lol.

cheers!!!

 

[heapsreal]

olsers web, olsers web, my brains fried, i just realised my spelling, lol.

 

[Vojta]

Hi heapsreal,
could you please post link to the Olso's web here? I failed to google it.

Few weeks after I got sick I had positive only EBV VCA IgG and EBNA. After month I was positive to all titres (VCA IgM, IgG, EBNA) except EA-R. Now year and half after I'm completely positive to EBV, including EA-R. (VCA IgM went negative once)

I think the same as you. The reactivation of EBV is just consequence of underlying immune problem. XMRV fits here and some other infectious triggers could help start this cycle which EBV keeps running.

 

[heapsreal]

hi vojta,
not many links on computer, im reading an old copy from a friend.
http://www.amazon.com/s/ref=nb_sb_n...ripbooks&field-keywords=olser's+web&x=11&y=19 this is just a link to where u can buy a copy.
I believe using antivirals can help u feel better as well as free up the immune system to go after other bugs too.

cheers!!

 

[insearchof]

hi Heapsreal

It's been along time sinceI read OW....can you tell me whether Parish (UK) and Shelekov (USA) examined the Lake Tahoe cohort or any other ME expert? Also, did these men submit submissions or anything to the CDC before the CDC devised the Holmes criteria?

 

[heapsreal]

hi Heapsreal

It's been along time sinceI read OW....can you tell me whether Parish (UK) and Shelekov (USA) examined the Lake Tahoe cohort or any other ME expert? Also, did these men submit submissions or anything to the CDC before the CDC devised the Holmes criteria?

Struth!!! Im only just over half way and i have been smashing it too, its a condensed book, lol. So far know one is investigating tahoe but bloods were tested. I am starting to think that defreitus virus is what they are finding now, but so much politics involved. Does make u angry because they could have had all this sorted years ago. Funding for cfs was syphoned off for others stuff etc . The original display of hhv6 virus exploding the cell was interesting as cheney got the pic blown up and showed a retrovirologist who said it wasnt a herpes virus but looks like a retrovirus. I think they know its a retrovirus but keep trying to supress scientist by not giving out money for cfs studies. This is why i think its important that we all give little bits often to WPI for more studies etc.

cheers!!!

 

[insearchof]

Hi heaps real

Where was that jreported ie Cheney blowing up a pic of HHV which he showed to a retrovirologist who said it wasnt a HHV? Did the retrovirologist suggest it was a retrovirus? If so was this around the time of Defraitis work or leading into it?

OW is full of info, but very hard to read.....with the jumping back and forth narrative style...very hard to read for someone who is healthy, near impossible to read with ME

 

[heapsreal]

Hi heaps real

Where was that jreported ie Cheney blowing up a pic of HHV which he showed to a retrovirologist who said it wasnt a HHV? Did the retrovirologist suggest it was a retrovirus? If so was this around the time of Defraitis work or leading into it?

OW is full of info, but very hard to read.....with the jumping back and forth narrative style...very hard to read for someone who is healthy, near impossible to read with ME

Somewhere between page 300-400, thats about as best i can tell you where its at, but i think it was around the time defreitis found the retro. reading the book it seems that most experts outside the CDC thought it was a retrovirus, especially retro and viral scientists.

cheers!!!

 

[August59]

hi aug59,
So do you think the hhv6 may have cause your immune dysfunction and then ebv titres have risen?? I take it you were negative to cmv. Although valtrex has little effect on hhv6 but cheap, have u considered trying valtrex for some improvement maybe??

cheers!!!

Yes, I was negative for CMV. I'm not considering anything right now due to financial situation. Waiting on disability hearing which takes awhile right now. If I had the funds I would go see one of the top docs in US or abroad. Overall I have been trending upwards for the last 6 months and if I could get my hormones straightened out I think I could go back to work. I have a tract of land that I'm trying to get a loan against till SSD or return to work, but that seems impossible. I do not won't to go on SSD and really want to go back to work, but will just have to let everything play out.

 

[TinyT]

Hey heapsreal, I've been reading a borrowed copy of oslers web also. It's really good but slow going! I'm almost half way through.

My EBV and CMV tests showed past infection but not current infection (IgG & IgM- can't remember which is which). I really wish we could get antibody titres done here in Australia as I'm sure our levels would be higher than normal.

I too am astounded by how the CDC ignored the outbreaks & clinical evidence. If only! We may be 20 years ahead of where we are now.

 

[heapsreal]

WOW!!! i finished oslers web and it took me this long to spell osler properly as well as alex pointing it out, lol and i still struggle, my brain seems to want to say olsers, anyway, i finished it and there was just lots of unanswered questions, it makes u feel very negative about anything the CDC have to do with cfs, even the recent NIH meeting, u can see recent cfsers who havent read oslers web get sucked into the CDC's false sense of security. I think if people are wondering why klimas and mikovits are so outspoken about cfs then they need to read oslers web and see how the pushed defreitus, cheney, peterson, ampligen to the ground and then kicked them in the guts, just like a group of bullies, thats why there hasnt been alot of cfs research, because the scientists arent game as they know they are going to get bullied like the guys who stood up for cfsers before.

Whats amazing is they have known for so long about there being a possible retrovirus in cfs but they have ignored it. Near the end of the book a new zealand scientist had found evidence of a retrovirus in cfs patients that had come from an outbreak over in new zealand and he was invited over to the States to talk about it, now this was after they had kicked defrietus in the guts and she was down and out. Now when this bloke from NZ got up to speak all the did was take the piss out of him, he had heard of what had happened to defreitus and saw that they were just using him to make another example that cfs in another form of depression, so once again the CDC clamped down on another avenue of a possible cause of cfs . I just dont really understand what they have to gain from keeping cfs as a psych condition other then proving that they having been wrong for so many years.

I think we should all go and donate blood and cause some mass hysteria, nothing but abit of exercise wont fix????

cheers!!!

 

[liquid sky]

Wow, you did well getting through. I'm only half way and need to get it done as I ordered it from an out of town library. It is totally amazing how everything just keeps on getting repeated.

They do talk about the insurance companies benefitting from the definition. It only stands to reason, if there are no approved treatments medically, the insurance is let off the hook. I can't help but think it goes deeper than that.

Congrats on getting through it. I agree, it should be required reading.

 

[heapsreal]

also ampligen i think will never get approved until there is an actual definative test to say u have cfs. At the moment they cant approve a drug that can cure a condition like cfs that only exists when all other conditions are excluded, because as soon as they find a certain condition then u dont have cfs, supposedly. All those people in lake tahoe who had cfs who went on to develop cancer, they dont have cfs anymore because now they have cancer, strange but thats the way they have written the definitions and it stops the establishments looking for a link between other medical conditions and cfs other then psychological stuff. The way it is written cfs is a condition when they cant find whats wrong with you, supposedly??? But the cdc have written all these strange definitions into cfs to muddy the waters of this illness to prevent it getting any recognition.

I wonder what size volume 2 is going to be like from 1995 through to now with all the xmrv stuff, holy dooly??