posted
I for one totally believe I was MIS diagnosed with Lyme. I had a "flu" and was never the same afterwards. I went with the CFS diagnosis for two years and then looked for another opinion.
I was then tested with WB and only had 41(3 different times) positive. Doctor at first said he wouldn't treat me but then decided to. I was on abx for almost 3 years with no results. I even went to NY where I was treated with IV and IM and still no recovery. They wanted to keep treating and I finally said enough.
I am sure my illness was viral related. I still suffer (5 years) now with unrelenting chronic fatigue/exhaustion and left leg pain. The abx never relieved these symptoms.
So I am no longer seeing the doc who started me on abx or the famous NY doctor who went along with the treatment. I am happy that I am no longer putting massive amounts of abx into my body. I may not be well but I don't believe I would have become well either.
For me it was the correct decision to stop the maddness because I knew it was leading me no place. I wanted to believe I had Lyme so I could have some kind of treatment and hopefully get well. I actually questioned the diagnosis alot because I wasn't responding and I didn't feel as though I related to people who actually have Lyme.
I for one hope to be tested for this new virus. Maybe I have it and maybe I don't but I for sure never had Lyme.
Posts: 343 | From North Carolina | Registered: Oct 2008
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seekhelp
Frequent Contributor (5K+ posts)
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posted
Yours is the kind of story that scares me Kim812. I'm sorry you went through all that. I always wonder if these LLMDs know when enough is enough. There borders a point on medical irresponsibility after a long time. By that point, the patient wiped out their finances, is emotionally drained, and has no resources left for future endeavors.
This 'clinical diagnosis' mentality certainly seems to have merit, but also leaves room for much abuse.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
The thing to remember about your story kim is that lyme is a chronic disease. That means incurable. So, the fact that you did not get cured from treatment does not prove you didn't have it.
I am absolutely sure I had a serving of tickborne diseases from a bite in 96. Although the babesia left after months of treatment, I am still sick from lyme and other unknown bugs. Several critters have been found in my blood. Not identified yet, and the question is whether they are opportunistic, reactivated latent germs, or acquired from the tick.
There are a lot of unknowns here and anyone who is sure about anything is probably overlooking factors. As in I didn't have lyme, I had a retrovirus instead.
And on the question of treatment: anti-virals are not used against AIDS which is also a retrovirus. So, this new retrovirus would presumably also need anti-RETROVIRALS instead.
Posts: 8430 | From Not available | Registered: Oct 2000
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quote:Originally posted by kim812: I was then tested with WB and only had 41(3 different times) positive. Doctor at first said he wouldn't treat me but then decided to. I was on abx for almost 3 years with no results. I even went to NY where I was treated with IV and IM and still no recovery. They wanted to keep treating and I finally said enough.
So you never had anything but 41 band? I would think its not lyme too. ON the other hand were you ever tested for CPN and other chronic bacterial infections ? Albeit if you been on combo ABX for 3 years it probably doesnt matter -if its bacterial it should been killed already (or its so persistent now that abx wont kill it anyways)
quote: I am sure my illness was viral related. I still suffer (5 years) now with unrelenting chronic fatigue/exhaustion and left leg pain. The abx never relieved these symptoms.
Have you ever tested for them? Did you try antiviral treatments?
quote: I for one hope to be tested for this new virus. Maybe I have it and maybe I don't but I for sure never had Lyme.
I wouldnt rely on single test for single virus. For once it is not available to public seems and it will make take decades before that. And it might be another virus. And even if you are positive treatment would be the same (anti virals)
I would personally try therapeutic trial of antivirals
Posts: 856 | From MA | Registered: Jul 2009
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Keebler
Honored Contributor (25K+ posts)
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posted
- Allicin is looking very good right about now. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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quote: Same with the dying honey bees with CCD and the dying bats with White Nose Fungus.
Well there are many other environmental reasons other than EMF. There is no research about EMF doing much harm (aside from localized high power sources such as power grid electric lines, radars etc) . I agree there should be more research done about EMF.
But realistically there is no point stressing about EMFs. - You cant avoid them.
And regarding chronic diseases there are many other factors (such as identified pathogens) which you can do something about , so its irrational to waste your time chasing EMF ghosts
Posts: 856 | From MA | Registered: Jul 2009
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posted
Mono here, too. Never was the same aftewards.
I think XMRV breaks down the immune system so that opportunistic bacteria and viruses get into the cells and replicate. Of course much more complicated that that.
-------------------- sunnymalibu Posts: 192 | From california | Registered: Jul 2006
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Bugg
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ChuckG-Thanks for posting the info about testing...Please update us if you decide to proceed with it yourself....
Kim812-I appreciate your comments on this thread...Unfortuantely, I think a number of people are in your same situation...
As for treating with antivirals in general, I would just like to caution against doing that without a positive test for such a virus. I remember speaking with one of the heads of the HHV-6 Foundation and she said you can do harm to yourself by treating with some of these antivirals WITHOUT a positive test for the virus.
On a hunch, my LLMD treated me for HSV-1 with Acyclovir. I wound up with an erratic heartbeat from it....Luckily it's resolved itself...But I would hope that others would learn from my mistake...
Posts: 1155 | From Southeast | Registered: Oct 2005
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posted
Right massman I saw a commercial the other day about doanting money to provide these pills that they give to children overseas for parasites. A simple treatment not a long drawn out protocol.
You never hear of anything like that here but we are sending money over to do it in other countries?? Do they think because we are Americans we are immune to parasites?
If I went to my regular pcp and said I want to be treated for parasites, or candida or heavy metals they would look at me like I had two heads. They know that all the above mentioned exist and can cause heath proplems but they wouldn't dream of treating them.
I will be curious to see how this all pans out but I still believe that my most debilitaing symptom which is Chronic Fatigue is from the Lyme Bacterium.
-------------------- If you keep doing nothing...nothing changes!
If your tick feasted on a mouse with only Bb, you get Lyme which responds to antibiotics.
If it feasted on one with XMRV, you wind up with CFS.
And if it feasted on a mouse with both, you wind up with the chronic form of Lyme.
And maybe mosquitos or other bugs can transmit XMRV, so that you can get CFS without having a tick bite.
Posts: 7 | From NY | Registered: Mar 2009
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posted
I was tried on anti virals two separate times with valtrex and valcyte. I did not have any positive tests for any type of virus. I have been tested by Dr. H for everything you can imagine ($ 5,000) worth of blood testing.
I showed nothing. Yes, I only had band 41+++ on my IgG test (WB). Dr. H agreed that with the amount of abx I had been on that even if it was some other type of bacteria it should have been killed many times over. I have chronic yeast now and also had to have my gallbladder removed due to the Rocephin..yes I was taking Actigal the entire time. So I will continue searching and not rely on one test. I just hope everyone will think twice about their diagnosis and if you are not getting better then it might be time to re think. I never herxed, or had cycle of symptoms. Mine were the same day in and day out. But yet the doctors continued to give me massive amounts of medications and I continued to take them. I might never know what infected me but I will say that I am not worse off the abx.
Posts: 343 | From North Carolina | Registered: Oct 2008
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posted
lou- I appreciate your comments and I understand Lyme is chronic. I guess what I am trying to say is when I walked into the doctors office that day I had two chronic symptoms which were chronic fatigue/exhaustion and calf pain. Now 30 months later and thousands of pills and IV's, IM's and herbals I still have those two same exact symptoms.They are just as debilitating today as they were when I became sick in 2004.
I don't think continuing on with massive doses of abx is going to change that. Even if they had become 10 percent better I would have kept on but they haven't. That is when I opened my eyes and said something isn't right here.
Even the doctor (Dr H )was at the point of sending me to a chinese herbalist or even out to a clinic in Arizona. I decided that day to quit treatment and look elsewhere.
I am just sorry about the massive amounts of money my insurance company paid out and the incredible amount of money we paid out of pocket for the doctor visits and consults.
I am sure lots of people have Lyme and can't get well but for me I don't believe that is the case and hopefully someday I will have my life back from whatever this is...
Posts: 343 | From North Carolina | Registered: Oct 2008
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sparkle7
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I'm with you, Kim... I don't think I had Lyme but there was nothing else my doctor could find as a cause of my symptoms.
Fortunately, I quit the abx before any long term damage set in. This retrovirus may be the cause of some of our ills but maybe not...? We are all different.
I, also, had CFS when I was in my 20's - they tested me for Epstein-Barr & it apparently wasn't the cause. This was back in the 1980's...
There may be alot more out there that they haven't discovered or made big media statements about. My "kind of cynical" feeling is that they may have a drug in the pipeline for this retrovirus. So, now they are saying in the media that it wasn't all in our heads...
Big comfort to me after all these years of suffering & having people say abusive things to me as to the cause of my illness.
Please keep in mind that this is a RETROVIRUS... It's different that a virus. Anti-virals probably won't touch this thing.
I do agree that it's the multiplicity of things that are making us ill. I don't think people should feel that since this has been discovered, that it invalidates a Lyme diagnosis. I believe there are false negatives & positives with Lyme & company.
In my book - all of these things are legitimate & need to be treated properly. The discovery of one does not discount the others. I didn't appreciate taking tons of abx for something I probably didn't have, though.
What the drug companies, the gov't, & the insurance companies do is sort of beside the point for me... I don't have insurance & I'm not fond of taking drugs.
Most of the doctors I've seen don't really know what is wrong with people or how to treat them & the tests are inaccurate.
Where does all of this lead us???
I guess I've stopped looking to them for guidance... We all just have to find a way to do the best we can.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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Hoosiers51
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-
So what is the treatment for this XMRV?
Or is that still unknown?
(or was it somewhere above and I missed it?)
When I read something like this, the first thing I think is, "okay, so what do I take for it?" Might as well try whatever the determined remedy is. If there is none, I'll just google "XMRV" in 6-12 months to check up on it.
I'm sure I currently have or have had Lyme, but who knows what is really holding me back. That is what it boils down to. -
Posts: 4590 | From Midwest | Registered: Jun 2008
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posted
Sparkle- we do all have to find our own way. I have lost alot of trust in doctors and I am thankful I finally was able to quit the abx on my own. When things don't add up then it is time to take another look.
I do believe there are alot of people very sick from Lyme and at one time I was convinced that I was too even though I had many doubts.
I am convinced though that whatever I had was a viral attack and not bacterial since the massive amounts of abx should have killed it at least that is what I was told.
I am not sure I will ever get well or what the heck attacked me that day but I can say that I have learned alot in the past 5 years and will continue forward with my search...
Posts: 343 | From North Carolina | Registered: Oct 2008
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posted
About the 67% og CFS patietns with XMRV, they posted on their webpage that they refined the testing and found that they found the virus in 95%. Maybe someone can post the link.
Posts: 366 | From Europe | Registered: Nov 2008
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posted
Robert Silverman, a professor at the Cleveland Clinic Lerner Research Institute who is one of the co-authors of the study and one of the discoverers of the XMRV virus, said he believes the virus began in mice and then spread to humans, and that "in most cases, people's immune systems are probably able to control the virus."
In most cases..... This is just another dead end in my opinion. There has to be a reason your immune system isn't controlling it. A chronic infection to start with like lyme,bart, mycoplasma or chlamydia. The article doesn't say if healthy controls were used along with cfs people. Isn't it possible just like ebv that many healthy people have this virus too. They aren't even sure if it causes it or is just along for the ride. My symptoms flare when I take antibiotics. I am sticking with a bacterial cause.
Posts: 433 | From new york | Registered: Dec 2004
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XMRV and other associated conditions including FM, MCS and Lyme October 9th, 2009 in XMRV
As for overlap conditions in Dr. Mikovits' cohort associated with CFS including FM and MCS and chronic Lyme and MS-like patients, I cannot speak to that. However, my clinic is filled with such overlap conditions. I suspect it will not matter very much. They are most likely infected with XMRV if they meet criteria for CFS with or without FM or MCS or chronic Lyme. Perhaps pure FM or pure MCS or pure Lyme will be different in degree of infection and maybe not. It will be very interesting to watch this data develop and expand to CFS-like conditions and the few pure FM and MCS cases that I have seen over the years. I have not really seen what I would call a pure Lyme case but many with CFS and a positive Igenex WB assay and antibiotic failure for chronic Lyme.
Posts: 27 | From my own little world | Registered: Oct 2008
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posted
they found that 3,7% of healthy people tested positive for XMRV, vs 95% of sick people.
Correction, 98% of sick people. http://www.oslersweb.com/blog.htm?post=638469 " XMRV has been in the human population--and we can assume, in the nation's blood supply--at least since 1984. Mikovits found XMRV in a sample of frozen blood that had been saved by Dan Peterson as long ago as 1984. The blood happened to have had been drawn from a patient who went on to die of mantle cell lymphoma, another disease XMRV is suspected of causing."
Because of that, there is concern about blood transfusions etc spreading the virus.
Here is an abstract about retrovirus and unintentional spreading: http://www.retrovirology.com/content/6/1/86 check out the two comments too. They actually mention XMRV in the article.
[ 10-11-2009, 11:26 AM: Message edited by: n.northernlights ]
Posts: 366 | From Europe | Registered: Nov 2008
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posted
The Whittemore-Peterson Institute which supplied the samples in which XMRV was detected is based in Nevada. The samples included large numbers from local cases of CFS.
The Lake Tahoe region of Nevada, site of the CFS outbreaks of 1984-1986, is remarkable as one of the few sites in the US known to be endemic for ticks carrying the relapsing fever borrelia.
Dr Mikovits' team have announced confidently that the XMRV virus is transmitted via blood and body fluids, but is not airborne. In other words, the virus is spread in much the same way as HIV.
However, unlike in HIV infection, the majority of CFS victims who acquired their disease in 1984-86 are unlikely to have got it through sexual contact, sharing of infected needles, or exposure to infected blood or body fluids. The clustering of the disease suggests an environmental cause.
The clustering of a Lyme-like illness in an area known since 1921 to be an endemic borreliosis focus seems too important to be pure coincidence. Whatever the significance of XMRV in CFS, I find it hard to believe it is the whole story.
Elena
-------------------- Justice will be ours. Posts: 786 | From UK | Registered: Oct 2007
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sparkle7
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Thanks for the info n.northernlights... I'll have to read it all when I have time. It's really unfortunate about all of this stuff.
I'm glad some of it is coming out. I'm sure it's just the tip of the iceberg...
8 legs bad- do you feel this new info about XMRV is connected to Lyme somehow? Do you have any evidence? Please post.
FYI - my mother had lymphoma & I eventually got CFS. Kind of bizarre... I think she got the lymphoma diagnosis in 1975 or so.
I was diagnosed with CFS around 1989 - I think. It's hard to say if they were connected somehow.
I was able to put my symptoms of CFS into remission after 3 years. I became ill again after 8 years with what was diagnosed as Fibromyalgia. 9 years later - they told me it was Lyme.
It seems many of these things can overlap. It's going to be difficult to weed all of these illnesses out & figure out what is really making people ill.
The other question is whether this is intentional... If I pull my observations back enough to see the world as a planet, I just wonder why so many stupid things are going on to make life miserable for people here.
I can't say that all of these things are purely accidental. There are too many coincidences. I just don't believe that the people of the world are so ignorant.
I don't know where to begin in finding a solution. I guess knowing about all of this is a start...
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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posted
I'm one of the people who have M.E. and Lyme. Having my immune system be so trampled because of the M.E., has let the Lyme go from barely noticable to just about taking-over in the span of a year. I agree with sparkle that having one doesn't disqualify the other...
I mean, it kind of does as far as "CFS," because according to the CDC's definition of it, if you have any other condition that can explain chronic fatigue, then by the syndrome's diagnostic criteria, you cannot have CFS anymore. It's really stupid.
But M.E. is its own disease, caused by a viral infection, that has nothing to do with just disqualifiying other illness. So if someone can get M.E. and then get Lyme, I don't see why someone couldn't get Lyme and then be unfortunate enough to get the XMRV virus, which the research suggests could be a factor in developing Myalgic encephalomyelitis. Just my two cents.
Posts: 161 | From Southern United States | Registered: Sep 2009
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quote: However, unlike in HIV infection, the majority of CFS victims who acquired their disease in 1984-86 are unlikely to have got it through sexual contact, sharing of infected needles, or exposure to infected blood or body fluids. The clustering of the disease suggests an environmental cause.
Hmm if its not trough sexual contact then what?- seems leaves only mosquitoes/ticks.
I wonder though if details about this CFS study are available anywhere- I am interested whether there was high percentage of sexual partners having same disease (that could mean one got them from the environment and his partner contracted it from hin)
quote:
Whatever the significance of XMRV in CFS, I find it hard to believe it is the whole story.
IF they find xmrv in 98% of people with CFS that is very important. It means it is reliable marker at the very least . And then they could start investigating how xmrv can cause symptoms .
I wish they made the test available
Posts: 856 | From MA | Registered: Jul 2009
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posted
there is a link to a power point presentation at the bottom of http://www.wpinstitute.org/xmrv/index.html , and you see the virus budding from a cell. Kinda looks like the small unidentified objects in the Fry lab smears.... especially when you compare the size of the cell and the size of the virus in each of them.
cdc--here is a longish history about cdc and ME/CFS that should be interesting re. lyme too: http://www.oslersweb.com click on the link the_why___a_speech_in_london
"This became pattern at the agency--give the least experienced person you can find responsibility for the disease, someone easily cowed--then pull the strings from above. " they had 300 cases, but only examined ten of them. ..."Holmes suggested to journalists that two doctors in Nevada had simply worked themselves into a frenzy; for extra measure, he suggested they were seeking publicity...." ..."
"To derive both the criteria and the name, Holmes engaged in correspondence with about 16 doctors around the country, most of whom had either seen no patients with the disease Peterson and Cheney had described, or had seen a very few"...
..."a pattern that was to continue in the years ahead, when the CDC barred its doors to doctors who actually interacted with patients. Such doctors were, in agency speak, ``contaminated.'' In other words, if you, as a physician took this disease seriously, or saw patients, you could not be trusted or involved in any facet of CDC investigation of it because you were thought to be biased in favor of the disease existing. ..."
"With its latest definition, the agency has created a vast canvas upon which psychiatrists and psychiatrist-wannabes can endlessly doodle. We see these papers almost daily from psychiatric investigators all over the world, especially in the UK, Atlanta, the Netherlands and elsewhere--investigators who twist themselves into knots trying to pin the cause of what they're calling ``CFS'' or, alternatively, ``fatigue'' or ``unwellness'' on bad relationships, personality disorders, lousy childhoods, genetic pre-dispositions to stress overload, and so on ad nauseum.
Bottom line, the CDC isn't defining, they're not studying, any known disease. Their epidemiology is not worthy of the name; I doubt there is a single person at this agency who could identify a case.
Which leads me to the CDC's third area of harm: It's research.
For many years after the Tahoe investigation, a well-supervised Gary Holmes wrote letters to senators and congress people promising the world--patient registries, tissue sample banks, a physician reporting system, surveillance. And every spring the agency sent its leaders to Capitol Hill to testify to Congress about the rapid progress their researchers were making in the disease.
But the fact is, they were making no progress and doing no research. I call this the agency's ``Rorshach era'' because one of Gary Holmes' supervisors fondest desires was to administer Rorschach tests to CFS patients. Cooler heads at the agency persuaded him that these ink-block relics from the 1920s weren't considered valid evidence in court cases. "
" Occasionally the agency would direct energy into attacking research that seemed to powerfully legitimize this disease--because in keeping with their business model, they had to protect their brand, ``CFS,'' and promote their authority over the authority of non-agency scientists.
In 1992 for instance, when Anthony Komaroff published his watershed paper suggesting that what the agency had named CFS was actually an infectious disease of the central nervous system, William Reeves nearly lost his mind. What could be more embarrassing to the CDC than if the opinion makers in the medical community--the Brahmins--actually took this paper seriously? "
"To hell with scientific discourse--we need to annihilate the competition, the boys from Harvard, not to mention the clinicians named on this paper who had examined and studied, by then, thousands of patients.
Soon after, the CDC went on another search and destroy mission when Elaine DeFreitas, a microbiologist at the Wistar Institute in Philadelphia, reported she had found fragments of a novel retrovirus in patients and their close contacts, but not in controls. A third of her patient samples came from children.
DeFreitas published her data in the Proceedings of the National Academy of Science and presented at a major neurological conference in Japan with her collaborators Paul Cheney and David Bell.
Imagine how the CDC must have felt when DeFreitas's finding were reported in Newsweek. Talk about a game changer--talk about embarrassing! It was Tahoe all over again, they had to mobilize, they had to respond.
The agency tried to replicate DeFreitas' findings and failed. Nevermind that scientists in Atlanta refused to follow DeFreitas' exacting protocols, worked out over a period of four years; or that the blood samples the agency was using became contaminated with a mouse retrovirus during the experiments; or that the number two at the agency, the deputy director, shut the investigation down with a, ``That's it boys and girls,'' before the agency scientists involved believed they had had a chance to explore the finding fully. "
" Tellingly, the agency chose to publish its failure to replicate DeFreitas' retrovirus finding in not one, but three different medical journals. As they say, ``It's not enough to wound the lion, you must kill it.'' In addition, Brian Mahy, Bill Reeves' boss at the time, wrote DeFreitas' boss at the Wistar Institute and suggested she be fired; I have the letter. Again, a pattern in Atlanta: whoever challenges you, whoever threatens you with exposure, must be destroyed. Destroy the message and the messenger. "
well, XMRV is a mouse retrovirus.
[ 10-13-2009, 07:26 AM: Message edited by: n.northernlights ]
Posts: 366 | From Europe | Registered: Nov 2008
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seekhelp
Frequent Contributor (5K+ posts)
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posted
Blaze, I have to ask one thing. I'm not agaist or for the EMF issue as I don't know enough. It must have some validity if researchers like Dr. K have concerns about EMF.
What I don't understand at times is you have 234 posts on this board and I'm betting all 234 are EMF related. Don't have you other concerns, advice, positions on TBIs you could share with us all. If you've researched EMFs so avidly, I imagine you're as thorough with other possible causes of these illnesses.
Why are you so laser focused on this one topic? I've always wondered. I never see any posts just stating how you're feeling, symptoms you're experiencing, treatment you've tried, and other things.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
northern lights has posted a description of govt malfeasance in CFS that could just as easily be used for lyme, just change a few names. Apparently this is a well known response to new diseases. I bet they have the plan in a file, like some cities have storm response plans.
Posts: 8430 | From Not available | Registered: Oct 2000
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quote: And it seems only a handful of people here on Lymenet have been cured of Lyme. Most of us suffer on, even with multiple antibiotics.
There are many reasons they might not be cured
quote: Do I often trail off into the EMF topic? Yes. Because the spirochete that causes Lyme isn't the devious, ruthless demon we've made it out to be.
Umm It is what it is. If you search on pubmed for borrellia you can read for a while about its multiple forms ,biofilm formation and abx resistance. All based on actual research
quote: It only crossed our blood-brain barriers when we happened to have our heads in the path of some radiation source at the wrong time.
Any studies proving that? No? -then it is just speculations. Does not mean it could not be true, but I dont think its productive to investigate every single speculation out there, especially one you cannot realistically address (seriously what you suggest to do about emf? live in the desert?)
Posts: 856 | From MA | Registered: Jul 2009
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quote:Originally posted by n.northernlights: Bottom line, the CDC isn't defining, they're not studying, any known disease. Their epidemiology is not worthy of the name; I doubt there is a single person at this agency who could identify a case.
Wow, wonderful explanation there, northernlights! I know this is a Lyme forum but that's a very good description of the whole "CFS" thing.
Posts: 161 | From Southern United States | Registered: Sep 2009
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posted
I wonder how many here have that gammaretrovirus, as they would need antiretrovirus medicines in addition to antibiotics. There are tests coming. That would explain why many struggle for such a long time with lyme.
I wonder if the cdc has been sitting on the "mouse retrovirus contamination" all the time, refusing to research it.
Posts: 366 | From Europe | Registered: Nov 2008
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"Friday, October 9, 2009 Testing for XMRV I'm hesitant to post this until I can verify it but here's some info about how to get tested for XMRV.
TESTING
VIP lab in Reno, NV has several test kits for, or related to, this virus. One is a PCR test for the XMRV virus itself. Another test kit recommend by Dr. Paul Cheney is the NKCP & LYEA test. Your local doctor can call the lab for information and can order the test kit(s) sent to directly to you. You can also call for pricing, which has been embargoed until the release of the paper. VIP Lab: 775-351-1890 answered 11am-7pm (CST) M-F.
I plan on calling the VIP lab for pricing....
Okay, I called VIP Lab in Reno. They do have test kits for the XMRV virus but they won't have a price on it until next week.
If you want to be tested call the lab at the above number and they will ship out a kit to you. Your doctor has to sign off, then take it to a local lab to get the test done and then it gets shipped overnight back to VIP Labs. It takes about two weeks to get the results. The woman I spoke to was very nice. They are swamped with calls but expected it. "
Posts: 366 | From Europe | Registered: Nov 2008
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
That lab is going to make some serious money.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
I think their findings are right, and I think that this virus they have found (which is supposed to be in many ways similar to HIV) is an enabler for Lyme.
When someone gets chronic Lyme they are extremely lucky if they come over a educated doctor by chance. Most people (who have got help) have seen some ten or twenty doctors (or even more) before they get help.
So very, very many of those end up with a syndrome diagnosis before they come across one with knowledge of Lyme.
So the majority of those who have chronic Lyme are either undiagnosed, or with one of the IDSA-docs which label them with some syndrome which fits their symptoms.
If anyone here knows how to get tested for this virus, then please PM me.
I think this is a great day for us with Lyme, and this might be one (of many) explanations as to why people don't have a visible immune response to Lyme.
Remember, Lyme doesn't get chronic until it has got a year or so.
If it's HIV-like, then it might damage the immune system.
Posts: 275 | From Home | Registered: May 2007
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Has anyone tried treating XMRV?
Until they treat it, they can't prove whether or not it causes CFS. Right?
Correlation (between two variables, like CFS and XMRV) does not equal causation. You learn that in college statistics classes, but other people pick it up via common sense.
Just because 98% of people with CFS test positive for XMRV, does not mean XMRV causes CFS....the two could simply be correlated.
Just like the studies that are suggesting people with positive Western Blots and ELISA's really have Cytomegalo virus and EBV instead. Are the viruses *causative* of the positive WB's, or visa versa?
In other words, it could just be that people with Lyme test positive for a lot of viruses. I haven't read those EBV studies, so I don't know if they actually prove causation (which would be telling) or simply correlation (which means it's a chicken vs. egg scenario) with positive Lyme bloodwork.
[In case this is confusing anyone, these last two paragraphs are off the XMRV topic, but I think it was in this XMRV thread that Timaca brought up those studies, so it is kind of relevant]
Anyways.....before I'd pay for an XMRV test, I would want to know that 1) there is a treatment, and more importantly, 2) that XMRV is not simply correlated with Lyme, as I suspect many viruses are.
Which would mean treating it might not make anyone with Lyme feel better.
I don't want to marginalize this discovery....because it is interesting, but I don't know how many conclusions we can draw, or whether this is just opportunistic, like HHV-6, like Fry's gram-negative hemobart, etc.
Posts: 4590 | From Midwest | Registered: Jun 2008
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posted
HIV makes the CD4 count go very low. Normally after years-
XMRV is a HIV-like virus.
Could it be that XMRV is an enabler? Could it be that XMRV makes the CD57 count go very low?
Posts: 275 | From Home | Registered: May 2007
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lightparfait
Frequent Contributor (1K+ posts)
Member # 22022
posted
Is there a chance that the Tetanus shot contains this virus? I test strongly energetically for acquiring this virus three times in tetanus shots.
Would be interesting to see if other new tests for this show I have it as well.
Posts: 1009 | From NJ | Registered: Aug 2009
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posted
I received a Lyme dx only recently. For the prior 18 years, my diagnosis was CFS and I met all the criteria for ME (Myalgic Encephalomyelitis).
I had tons of testing that showed reactivated viruses, abnormal RnaseL, and other biomarkers that people in the Incline Village outbreak had. In addition, I had an abnormal qEEG, tilt test, bike exercise test, and neurocognitive test, all considered markers for ME according to Dr. Hyde's definition of the disease.
I always relate best to people who have the type of CFS found in Incline Village in the mid-1980s. My symptoms match ME much more than they do Lyme.
I was tested for Lyme within a month or two of getting sick, and, despite negative test results, received ten days of abx treatment.
I was tested several more times for Lyme over the years, including at Stonybrook. It was only through IGeneX that I had some positive bands.
I am not responding tremendously well to abx. Frankly, I had a stronger response to one of the early antivirals.
So I think it is entirely possible that Lyme is the opportunistic infection, and that a retrovirus like HMRV is the cause of a suppressed immune system.
I care less about the label given my illness than I do about getting well, frankly. If HMRV turns out to be a causative factor and treatment is made available, then YAY!
Posts: 27 | From my own little world | Registered: Oct 2008
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
lightparfait,
You are testing for getting XMRV from a tetanus shot?
How are you doing energetic testing for XMRV specifically?
I got very ill after my recent DPT (diptheria pertussis tetanus) vaccine. It caused a horrendous relapse.
And why would that vaccine contain XMRV anyways? Maybe the animal/human cell lines used to create the vaccine were infected with the virus?
Posts: 4590 | From Midwest | Registered: Jun 2008
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posted
just google xmrv and contamination. Like http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=2519784 It says "Murine Leukemia Virus (MLV) is a rodent gammaretrovirus that serves as the backbone for common gene delivery tools designed for experimental and therapeutic applications"
Posts: 366 | From Europe | Registered: Nov 2008
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posted
Sparkle, I don't have evidence thst XMRV is connected to Lyme, but there is evidence that the disease labelled ME/CFS is caused by Lyme in many cases. Therefore if this present study which found XMRV in CFS patients is confirmed and verified by future unbiased studies, then that may mean there is a correlation between this retrovirus and Lyme.
However as someone here pointed out: correlation does not necessarily mean causation.
Northern Lights has posted a reference to the use of mouse retroviruses as a vector in genetic engineering. I think that that is a very important issue to take into account when we think about all this.
A typical experiment would involve genetic manipulation of the mouse retrovirus, knocking out gene sequences involved in replicating it, and adding instead a foreign gene, which the experimenters hope to implant into a cell of a living creature, such as a human.
The aim is to harness the retrovirus' trademark ability to make DNA copies of its own genes and insert its "impostor" DNA into the host's chromosomes.
This recombinant work was thought to be safe, because, as pioneers of the retrovirus technique reasoned, since they had removed the genes that would allow the virus to "come back to life" as it were, and replicate in the host, there could be no danger.
They were wrong.
Many living things have in them, as a natural part of their genetic make-up, "endogenous retroviruses",which are believed to be relics of ancient infective agents which eventually lost their pathogenicity, and came to be incorporated into the organism they had invaded.
Human beings are no exception - hundreds of different endogenous retroviruses have been found in the human genome.
The mouse retrovirus experiments sometimes went wrong because genes from endogenous retroviruses "filled in the gaps" and replaced the viral genes which had been removed for safety reasons. The monster is brought back to life.
So mouse retroviruses became a less popular choice amongst genetic engineers.
I think it's worth being aware of all these issues when we try to work out the significance of XMRV.
Elena
quote:Originally posted by sparkle7: ...
8 legs bad- do you feel this new info about XMRV is connected to Lyme somehow? Do you have any evidence? Please post.
..
-------------------- Justice will be ours. Posts: 786 | From UK | Registered: Oct 2007
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
What are, "gene delivery tools designed for experimental and therapeutic applications?" (from northernlights and the link).
I am confused as to what we are even talking about. Like what are the "applications?" Are we talking about the making of vaccines against other pathogens (not XMRV)? Or are we talking about scientists playing around (genetically) with XMRV specifically in a lab?
I was the one that brought up the "correlation does not equal causation" thing, but what we are talking about now is either over my head, or I'm just confused.
Posts: 4590 | From Midwest | Registered: Jun 2008
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emla999/Lyme
Frequent Contributor (1K+ posts)
Member # 12606
posted
In the article bellow Dr. Mikovits said that XMRV can lie dormant in people, until it is "turned on or off" by other factors. She gives vaccination as an example of something that could possibly "turn on" XMRV.
"According to Dr. Mikovits, XMRV (which admittedly sounds like a satellite radio system for your Winnebago) can lie dormant in people, until it is "turned on or off" by other factors, such as stress hormones like cortisol, or in response to the presence of inflammatory "cytokines," protein molecules secreted by immune cells to help regulate the immune system.
And then Dr. Mikovits dropped a bombshell that is sure to spark controversy.
"On that note, if I might speculate a little bit," she said, "This might even explain why vaccines would lead to autism in some children, because these viruses live and divide and grow in lymphocytes -- the immune response cells, the B and the T cells.
So when you give a vaccine, you send your B and T cells in your immune system into overdrive. That's its job. Well, if you are harboring one virus, and you replicate it a whole bunch, you've now broken the balance between the immune response and the virus.
So you have had the underlying virus, and then amplified it with that vaccine, and then set off the disease, such that your immune system could no longer control other infections, and created an immune deficiency."
Posts: 1223 | From U.S.A | Registered: Jul 2007
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Hey thanks for great link! I do not have much time right now to go find original papers (too busyr researching other stuff) , I trust they exist, glancing over abstracts it does look convincing though regarding EMF effects on BBB.
I agree with you that it is indeed subject that should be researched.
What to do about EMF is hard question though. I have a 2.4 Ghz wireless router sitting right there in front of me . Do I have to throw it away? What about the guy downstairs who has same thing? I can pick up around 4 WLANs right from my bed, and of course cell phones work too
Computer on my desk has 4 GHZ CPU, 1 Ghz front bus and 100mhz PCI bus, do they emit it too ? I relatively rarely use cellphone but it is the only phone I use.
At my job I am surround by computers and in server room there are hundreds of them.
So all in all - more research about EMF needs to be done. Given all other factors I just dont see any practical approaches to manage EMF
Posts: 856 | From MA | Registered: Jul 2009
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posted
The speculation is, the MLV mouse virus gene things they use can trigger/activate the other viruses, other retroviruses, or this one if it is lying dormant. Or even that some vaccinations have been accidentally polluted.
maybe it is just dormant XMRV activated by HHV-6, the common human herpesvirus responsible for the childhood diseases roseola. Or by any vaccination.
http://en.wikipedia.org/wiki/Herpesvirus in a table" ....Zoonotic infection found in 4.5% of general population and more common in laboratory workers handling infected mice"
I read about retrovirus in ALS patients that they found more retrovirus activity in relatives of ALS patients than spouses, so the speculation is that is was inherited and triggered somehow. (and they are quite sure ALS is retrovirus-mediated)xmrv has been ruled out in ALS patients (but they only tested a small number for xmrv)
Posts: 366 | From Europe | Registered: Nov 2008
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
Blaze - it's a thread about XMRV. Do you think there is a link between the retrovirus & EMFs? Who knows...? There could be. That's a long speculative discussion, though.
I think most people would agree that EMFs can be harmful. Extra shielding should be a safety concern for sure. It's just how do we get the Genie back into the bottle now?
It's kind of hard to live in a Faraday Cage.
8 Legs Bad - All of this gets so complicated. I wish there was a way to learn about all of this in laymen's terms.
I just have to do more reading, I suppose. There are other things I would like to be doing but now I have to spend time studying this...
I've read that there are peculiarities in the BB genome. This was actually the first bacteria that the Ventner Institute analyzed when they started decoding DNA - if I recall correctly.
I hope I'm using the correct language & accurate facts but I did do some reading on this a while back. Out of all the bacteria, etc. they chose BB to decode it's DNA first...
As for "I don't have evidence thst XMRV is connected to Lyme, but there is evidence that the disease labelled ME/CFS is caused by Lyme in many cases."
Many illness seem to overlap in symptoms. When my mother first got lymphoma - they thought she had cat scratch fever... I'm sure there are infinite examples.
Fatigue & pain are pretty basic to many illnesses.
There are so many tests for these pathogens that we are all dealing with. How do we know if any of them are accurate? If they are accurate - what do we treat these things with?
People seem to be having a very hard time with Lyme & the co-infections as it is regarding accuracy in testing & treatments.
If there are many viruses & many bacteria - the combinations could be endless. Then, you add environmental toxins, molds, funguses, yeasts, heavy metals, stress, EMFs, genetics, parasites, etc... It starts to become a very complicated picture.
Who knows what other weird pathogens are out there making people sick - either man made or natural... My feeling is that they are not natural but I'm not a scientist.
It's another situation where the Genie is out of the bottle. Once they started splicing genes to create bio-weapons it was all over... It's like a horror/sci-fi movie to consider the implications of nano sized chimeras & what that means for people on Earth.
OK - I'm just a crazy, conspiracy theory nut... Everything is fine. Go back to watching TV now.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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posted
This is all so very interesting. I used to live with and be surrounded by people with CFDs. And most were from Connecticut, too.
It was obvious to me that everyone was sick but we had no clue then as to what it was.
Without knowing more yet, it makes sense that the mice donated the retrovirus to the ticks that bit these folks, or that it was genetically engineered and let loose.
Peter J - you asked an interesting question about the CD57 possibly being attacked by the CFDs retrovirus.
My CD57 count is fairly up there - in the 140s, and I do not have the profound chronic fatigue.
So this is an interesting CD57 question - now wondering how many who have low CD57 counts also have profound fatigue.
And if there are more folks like me with high counts who are not overly fatigued.
Posts: 13171 | From San Francisco | Registered: May 2006
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posted
n.northernlights thank you very much for the ALS referance.
ROBIN123 (and others), please be "the devils advocate" here.
This is how I see it (still a hypothesis):
*) Dormant Lyme disease is very, very common.
**) XMRV is a newly discovered virus. The process of going from dormant to active can take about a year (with HIV it takes years, not a year, see example below). Most often XMRV is triggered (going from dormant to active) by other things, sometimes it's not.
***) Anything which challenges the immune system (a vaccine, HHV6, giving birth, mononucleosis, severe stress etc.) can trigger XMRV, and thereby make the Lyme disease active.
When the XMRV is active the CD57 count goes very low.
The CD57 goes additionally down because of Lyme, which then is to be seen as a 'synergistic' infection with XMRV. When they are together, and active, XMRV gets much more 'room' to do damage.
****) The least common way to get Lyme is that the infection goes from stage 1, to 2 to 3 immediatly after tick bite.
The only reason why this is perceived as the most common way is because it's very rare that those who don't get it that way find out (most often by doing a good job themselves) that they have Lyme.
*****) Back to point one, dormant Lyme disease is very, very common. And being dormant, the immune system holds the infection in control.
It's when the Borrelia gets the 'upper hand' on the immune system that the infection becomes active.
But the infection can break out without the presence of XMRV. When someone goes stage 1,2,3 directly after a bite, it MIGHT be that the bacteria load is pretty high with that person soon after the bite, and Lyme gets room to grow.
And other strong infections might do the same as XMRV (mentioned in point three), but most often it is with XMRV in the picture.
******) Lyme (with its hoards of sub-strains (the level under garinii, s.s., afzelii etc) and undiscovered strains) is what causes the majority of the symptoms. XMRV is an enabler.
*******) If XMRV is a HIV like virus, it might also be one (of several) reasons why the immune response is NOT visible with antibody-tests when someone has been sick for years.
It's pretty well proven that the ELISA has a sensitivity of above 90% a month or so after erythema migrains. It's absolutely not sure that those who don't get the rash gets an equally strong antibody response. But what is ABSOLUTELY sure is that the IDSA does not have any evidence for the sensitivity of the ELISA when someone has had an untreated Lyme disease for years.
Posts: 275 | From Home | Registered: May 2007
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posted
blaze.. I didn't say you were rude. I'm sorry if you felt I was being rude. I was just warning you about your posts since that is what happened before.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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