Topic: New Study Released re: CFS!!! A "Must Read"
seekhelp
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Member # 15067
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)
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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
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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
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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
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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
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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
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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
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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: 13116 | 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: 96222 | From Texas | Registered: Feb 2001
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nenet
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posted
Dr. De Freitas' commitment to studying and researching a cause for CFS, in the midst of such a political morass as CFS, was astounding.
I will never forget reading "Osler's Web." Before I found out I had Lyme, I was researching all I could about CFS, because at the time, that (and Fibromyalgia) was the closest thing I knew of that could explain my illness. I kept looking though, thankfully.
CFS is a very good area to study in order to observe that Lyme is not an entity unto itself when it comes to government and corporate industry neglect of patients' needs, intentional and unintentional obfuscation of a real illness, and corporate and government malfeasance.
"Osler's Web" is an amazing book, and I recommend it to every Lyme patient, because there are very valuable lessons in there for all Lyme patients, or for anyone with a serious and/or chronic illness.
Politics, and bad application of science, abound throughout medicine and healthcare, even cancer has its controversies in its science and treatment.
posted
I have profound chronic fatigue and physical exhaustion constantly. It basically never goes away but I have it at different levels everyday.
Anyway, my CD-57 was a 21 then a 36 up to 60 then down to 45 when I quit treatment. I never felt good no matter what level it was at.
So it will be interesting to see if chronic fatigue and the CD-57 are somehow related...
Posts: 343 | From North Carolina | Registered: Oct 2008
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posted
kim.. were you tested and treated for babesia?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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sparkle7
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The thing I don't understand is that they say HIV is slower than XMRC... Back in the 1980's in NYC - many people died of what was known as AIDS.
If it is slower than XMRV, why did it seem to effect people so quickly? How come I'm still alive with this (if it's what I have)?
If this is really what's been wrong with me, I've probably been ill with it since 1989 or so. I don't remember being bitten by a tick, ever... I never had a EM rash.
I do remember having very disabling flus on 2 occasions where I felt really awful. Both times afterwards - I became ill with CFS or Fibromyalgia.
I was able to get over the CFS when I was in my 20's after about 3 years. The second time when I became ill at 36, I was not able to kick it. I thought I had Fibro until I got a clinical Lyme diagnosis after being ill for 9 years.
I don't remember having any kind of contact with anyone who were ill with these sorts of symptoms. So, how did the people with XMRV acquire it?
All of these things are vague (or they have been for me). I had tons of bloodwork & nothing obvious has shown itself to be the cause.
It seems to me that this is really a complicated issue. I don't know if we will ever get to the bottom of it all. I don't think we are being given the whole story.
There alot of disinformation & outright obsuration, misuse of funds, telling people they are hypochondriacs, etc. Seems that some famous people with diseases like AIDS or CFS are able to be somewhat healthy (like Magic Johnson or Cher). What do they know that the rest of us don't?
Is it just a coincidence?
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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lightparfait
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Cher sees Dr. J. in Germany...who uses a special detox along with immunization therapy. I have heard this MD speak in my area. An amazing presentation. She is back in NY next month and wonder what her take on the XMRV is.
Farrah Faucett was also a patient of hers, and was too far along to help by the time she went for the German treatment.
Germany is currently doing more therapies with DNA and detox from inherited toxins, environmental toxins and acquired toxins. Saw pictures of patients with large tumors, the size of melons, shrink over time with the therapy. and now cancer free patients.
She says Americans are the worst off of any she treats across the world. We have so many disregulations, and our environment and lifestyle. She sees different things in people of different nationalities, and ways to treat cancer for them. Specifically Asian, African and European have different genetic predispositions. Americans are a mix of so many things, that each are individual, but require more work.
I found it very interesting. She said a cookie cutter approach cannot work with cancer. It has to be individualized medicine. And chemo never works, she claims. In tumors that have to be removed, she always finds borriella, and loads of viruses, bacteria and metals. She believes the main reason for cancer is bacterial.viral/ and toxins, like heavy metals/fungi/molds and parasites, added to preexisting genetic conditions. It's individual.
Posts: 1009 | From NJ | Registered: Aug 2009
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posted
P.S - XMRV = HIV = $$$ for big pharma. A life of expensive antivirals with no real cure. Please people. There is no interest in solving this puzzle, only selling more drugs.
Elaine Defrietas found a retrovirus AGES AGO and they did not pay attention. Didn't want to call it a "Heterosexual" version of AIDS at the time.
There are patients here that are bitten by ticks, there are patients that have become ill with airborne pathogens, etc...
This is no smoking gun and if they find/found it, we will never know.
Posts: 770 | From USA | Registered: Jul 2006
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Rivendell
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I guess that the most rational way to look at this is that a combination of viruses, bacteria, fungi, and parasites, plus genetic tendencies, environment, and stress all work together to make us sick and suppress our immune system. There may be one infectious agent that gets it started, but then the rest come along and we become disabled.
And I guess the best way to manage it and even maybe get well, is take vitamins, herbs, etc. that treat all these different infections, keep our bodies healthy by eating healthy food, including some raw or even vege juices. Work to stay as peaceful as possible. Find ways to sleep well. You know, do everything possible to cover all the bases. And if medication truly helps then do that too.
Posts: 1358 | From Midwest | Registered: Apr 2009
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And you don't necessarily get to see the tiny tick that bites you.
I had a known tick bite with no rash and no symptoms at all for ten weeks.
As of now, people are conjecturing that if the tick bit a mouse, then the mouse transmitted the murine virus to the tick. All conjecture, but interesting.
Lightparfait - I am successfully shrinking lipomas with noni juice and grapeseed extract capsules.
As treatment goes, it's painless and the results are clear - take these anti-inflammatory antioxidants and the lipomas shrink. Don't do them and the tumors expand. Clear as day. An endocrinologist in San Diego is working on this.
Posts: 13116 | From San Francisco | Registered: May 2006
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"XMRV is a gammaretrovirus, as opposed to HIV, which is a lentiretrovirus, from the Latin for "slow."
Lentiretroviruses may take years to cause symptoms after infection. Not so gammaretrovirues. They've long been known to cause neurological disease, cancer and immune deficiency in animals.
Until 2006, scientific dogma held that gammaretroviruses infected only amimals. "
Seemed alot of people died fairly quickly who were diagnosed with AIDS back in the 1980's - I'm not even sure if HIV = AIDS... I believe there is controversy about this.
Meanwhile, if I was infected with this XMRV back in 1989 or so - why am I still alive?
---
I looked up this Dr. J who treated Farrah Fawcett. Not much on CFS, mostly cancer treatments. I don't know if I would say that Americans are worse off due to the issues you stated, Lightparfait.
I don't know if I could agree with this if it's her stance on illness. Nothing personal towards you for mentioning it.
I mean, take a look at Africa... AIDS & malaria are rampant. India is pretty bad from what I hear regarding environmental poisoning & toxins - not to mention parasites for many countries, lack of clean water & sanitation, starvation, war, crime, rape, child soldiers, women treated as second class citizens, etc...
Life may be stressful here but it's not a war zone like in the Middle East or the Congo...
I can see that there may be issues regarding what your genetics are & that we need individualistic treatments but to put it the way you mentioned is a bit xenophobic. You probably don't mean it that way but it just sounded a little odd to me.
I'd like to know what kind of success rates Dr J gets with her approach.
---
Getting back to XMRV, I can see Rivendell's approach as being the right way to go for now.
Thanks for all of the info! I knew you guys would be on top of this news.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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quote: Seemed alot of people died fairly quickly who were diagnosed with AIDS back in the 1980's - I'm not even sure if HIV = AIDS... I believe there is controversy about this.
Meanwhile, if I was infected with this XMRV back in 1989 or so - why am I still alive?
well not people with AIDS die either. It the same thing - combination of your genetics ,environmental factors and individual diseases and pathogens which will affect overall how well you do.
I am not bedridden either, and some people apparently are so bad they cant walk for long time
I keep thinking about the statement that future of medicine is in modulating immune system. We still unfortunately not anywhere at that point, topic is poorly researched and poorly funded (on paper it funded well but the topics researched are mostly dead ends and aimed at making new symptoms controlling drugs instead of finding a cure)
Posts: 856 | From MA | Registered: Jul 2009
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posted
Lymetoo- Yes I was treated for Babs with Malarone for 14 months...
Posts: 343 | From North Carolina | Registered: Oct 2008
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lightparfait
Frequent Contributor (1K+ posts)
Member # 22022
posted
Sparkle, I'm not saying Americans are worse off..these are Dr J's findings from her own tests that the Americans she treated and treats have more built up toxins, and mostly from environmental or food related things than others across the world she treats.
Here is a link to someone who posted notes from a few of her talks...I was at a different one, but it gives you an idea of what she is about.
I forget exactly what the Japanese and others were said to have more of from her lab reports...maybe EMF's ...
I just thought it was interesting to see her statistics in the presentation as she has a unique world view of various cancers. Althought ;the Americans she sees, are the wealthy ones, and most likely have had plastic surguries galore...with who knows what injected for beauty!
She does see how tumors can shrink with various treatments without pharmaceuticals, surgury or chemo. She saves surgury and chemo for very last steps to prolong life when that is all that is left to do.
She said her American patients seem to have more surgery's , than others from other counties. She said the effect of anesthesia takes a big toll on the body as well. Her lecture was given to doctors and researchrs at Columbia U. and Cancer specialists in Texas teaching University Hospitals. She brought her results and procedures to the renowned ones here who are now starting the same type of cancer techniques, using immunizations for Cancer.
This was just announced about a year ago in the press as new Cancer breakthroughs at Teaching University in Texas...but this has been done in Germany for much longer and they are working with specialists in USA now. They are trying to work together. That's why she comes here to lecture.
We will see a new emphasis on individualized medicine in the future in the USA as well as complementary medicine.
She treats living cells with natural things.
She is a cancer surgeon, but also treats CFS, and all other chronic conditions, including lyme that are pre-cursers to the cancer. Not as an expert on CFS or other conditions...but just as a preventative to cancer. In consort with specialists.
She prefers to treat those who are proactive and come for evaluation to catch the cancers before they get too far along. Most successful that way. We all have cancer, and it can be found in our blood...but not everyone has it in tumor form. We need to keep the body flowing and purifying...so cancer does not take hold.
These are her thoughts...paraphrased, so I'm just sharing them here.
I am no expert and have not been treated for cancer. But I do see the relationships and am doing my part to keep as toxin free as possible.
posted
Is that necessary, James?
Posts: 845 | From Eastern USA | Registered: Jul 2006
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Bugg
Frequent Contributor (1K+ posts)
Member # 8095
posted
Post-Lyme syndrome and chronic fatigue syndrome. Neuropsychiatric similarities and differences.Gaudino EA, Coyle PK, Krupp LB. Department of Neurology, State University of New York at Stony Brook, USA.
BACKGROUND: Patients with chronic fatigue syndrome (CFS) and post-Lyme syndrome (PLS) share many features, including symptoms of severe fatigue and cognitive difficulty.
OBJECTIVE: To examine the neuropsychiatric differences in these disorders to enhance understanding of how mood, fatigue, and cognitive performance interrelate in chronic illness.
METHODS: Twenty-five patients with CFS, 38 patients with PLS, and 56 healthy controls participated in the study. Patients with CFS met 1994 criteria for CFS and lacked histories suggestive of Lyme disease.
Patients with PLS were seropositive for Lyme disease, had met the Centers for Disease Control and Prevention criteria, or had histories strongly suggestive of Lyme disease and were experiencing severe fatigue that continued 6 months or more following completion of antibiotic treatment for Lyme disease. All subjects completed self-report measures of somatic symptoms and mood disturbance and underwent neuropsychological testing. All patients also underwent a structured psychiatric interview.
RESULTS: Patients with CFS and PLS were similar in several somatic symptoms and in psychiatric profile. Patients with CFS reported more flulike symptoms than patients with PLS. Patients with PLS but not patients with CFS performed significantly worse than controls on tests of attention, verbal memory, verbal fluency, and motor speed.
Patients with PLS without a premorbid history of psychiatric illness did relatively worse on cognitive tests than patients with PLS with premorbid psychiatric illness compared with healthy controls.
CONCLUSIONS: Despite symptom overlap, patients with PLS show greater cognitive deficits than patients with CFS compared with healthy controls. This is particularly apparent among patients with PLS who lack premorbid psychiatric illness.
Posts: 1155 | From Southeast | Registered: Oct 2005
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
Thanks Lightparfait. Like I said - my comments were not directed towards you. I'm just a bit skeptical of all approaches.
I think it has been proven that most chemotherapies do not work for cancer. There are a few exceptions.
You really have to study it to see which ones are effective. My mother had non-Hodgkins lymphoma & she got an experimental therapy at Sloan Kettering & it worked.
So, I'm not anti drugs in favor of only natural remedies. You really have to conside everything carefully.
JamesNYC- Some of us have been battling this illness for many, many years. Not everyone has Lyme but some of us have been given that diagnosis. I feel I have been one of those people.
There are false positives with Lyme just as there are false negatives. I did the abx for about 9 months & nothing happened. No change in symptoms.
It's not uncommon. Some people take extreme amounts of abx & don't get better & may lose their gall bladders. Abx should not be taken lightly in my opinion for many reasons.
Some people sued the lab in Florida since they feel they were given a false positive. They took abx for a long time & lost their gall bladders.
I don't recall all of the details since I haven't researched this lately but you will find out about it if you search google. Not everyone who is ill with Lyme symptoms has Lyme.
This discovery of XMRV makes alot of sense to me. I you look at the website of the organization doing the research - they say that 95% of more than 200 people tested with CFS were found to have this virus.
It's important news but it's just the tip of the iceberg. If anyone has gotten a CFS, Fibro or Lyme diagnosis - it may be very important news about this discovery. I believe it is possible to have both. One does not cancel out the other.
coltman- thanks for your reply. I'm not trying to be flip in saying what I said. It's just that I lived in NYC around that time when AIDS first became known. People were dying left & right. It was sad.
It just confuses me when they say it's a "slow growing" retrovirus. It seemed that all of the sudden, alot of people got ill & died. Maybe it was more virulent at that time?
I have heard of cases where people were immune or that they were able to manage the illness. It just that it was a BIG thing where as the people who had CFS were ridiculed.
I'm sure it was very difficult for the people with AIDS but at least there was a public outcry for support.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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posted
Getting lymphoma and thereby CFS is not unnormal. It's actually pretty common. Everything which temporarly challange the immune system (and cancer and chemo is naturally such things) can make a dormant infection break out.
What I think (don't know of course, but think) is that Lyme causes most of the symptoms and XMRV could very well be an enabler.
Maybe the HIV-like XMRV works on CD57 like HIV works on CD4.
And when you have lyme they are synergistic (the lyme giving the XMRV more room, making the CD57 even lower).
Posts: 275 | From Home | Registered: May 2007
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
peter- They are saying that there may be a connection between XMRV & lymphoma - also prostate cancer... There are probably more things to it.
There needs to be more studies about all of this before we really know what's going on. It's just sad for the people who are ill & trying to get well.
My situation really fits the study that Bugg posted. Thanks for posting that.
Many illnesses have fatigue as a component. I believe there is a difference between fatigue & the kind of fatigue that you experience with CFS.
My symptoms have changed. When I had CFS back in the 80's it was fatigue. When I became ill again 8 years later - I had more pain rather than fatigue. That's when I was diagnosed with Fibromyalgia. 9 years later, I got a Lyme diagnosis...
I had lots of tests but nothing seemed to be evident as to the cause. My diagnosis for Lyme was clinical. I was also tested for EBV but my results were low.
There may be overlaps for all of these things - viruses, retro viruses, bacteria, parasites, mold, chemical toxins... At this point, it's pretty endless in what variations what may be making us ill.
I guess the thing that is important is that after all of these years - something is validating the people who were told they had a mental problem when it was CFS.
I believe CFS is a distinct condition from all of the other illnesses. We need to be able to separate it out so that we don't think it's something else & use the wrong treatment.
BTW - my mother had 4th stage lymphoma & chemotherapy cured it. Some of the drug treatments do work for cancer. In the case of Farrah Fawcett - we don't know if using Dr. Js therapy from the beginning would have saved her.
There's an Italian doctor who is having success at getting rid of tumors with baking soda.
All of these things are very individual. There is no one thing for everyone.
I haven't researched retroviruses since I had no idea that that's what could be making me ill up until now. We really have to research our individual case.
That's why it kind of makes me mad when people say everyone has to deal with mercury, yeast, mold, or "fill in the blank" or abx are no good or everyone should take abx indefinitely or we should all do AI, or drink mangosteen juice, etc.
No one here knows what everyone here should do. We all are individuals.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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posted
An interesting thread, I read about this at the weekend in 'The Independent' newspaper and was excited by the great news. I was most excited by the connection to mice as this is a source of Lyme infection too - please read on.
Stories from around the world on the discovery are on the link below. Clicking 'View Reprint' at the top gets the full PDF report free of charge.
Praise to The Whittemore Peterson Institute for Neuro Immune Disease - Nevada
"We have detected the retroviral infection XMRV is greater than 95% of the more than 200 ME/CFS, Fibromylagia, Atypical MS patients tested."
The next link suggests that the virus is present in mice? Consider these steps of infection:
1. A nymph tick usually takes it's first blood meal from a field mouse. The tick is then loaded with 'infectious soup' from the mouse consisting of various: bacteria, viruses (inc XMRV); parasites and other micro-organisms. The extent of the soup is yet unknown and will obviously vary.
2. The tick departs from the mouse and later attaches to a human/larger mamal for next blood meal.
3. Human is now multi-infected with the 'soup'.
4. Could lyme fatigue be caused by the XMRV element?
posted
I don't have time for a comprehensive post but...
1. XMRV might just be the latest piece of the puzzle for some infections. Add it to the viral column alongside all the other "Chronic Fatigue Syndrome" supposed viral causes. The big difference here is that XMRV is a retrovirus, not a herpetic virus.
2. We need to find out what, if any, cross reactions XMRV has especially on immune assays. For instance, there's some evidence to show that EBV and Lyme will cross react. If the test isn't specific enough, it is only going to lead people in the wrong direction
3. We need to investigate small mammal > tick > large mammal/human transmission vectors to illustrate if most people are picking up XMRV from the same bite that gave them everything else, versus a separate exposure.
Years ago a few associates and I applied for a grant investigating pathogens similar XMRV but were denied for pretty much being too small an operation in finances and reputatation. It irritates me it took some of the "big names" to blow the door off this sort of thing, but progress is progress.
I'm going to make a few calls to see if I can get some preliminary tests done for/on myself. If that goes through, I'll see what I can do about expanded testing.
Posts: 690 | From East coast, USA | Registered: Jun 2006
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
Are the mice infected in the lab or in the wild?
Sometimes these pathogens get loose & things in laboratories can be tainted...
When I first became ill - I was living in Brooklyn, NY. I would have had more of a chance to have contact with mouse droppings, etc. then with ticks.
Lots of rats live in the subways. I know ticks are everywhere - even in large cities but I don't think I ever saw any there. Who knows...? I may have gone for a hike in upstate NY or something.
How can we remember everything we did 20 years ago? Does it even matter?
Please keep us informed Blackstone.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
Some good info here about "natural" retrovirals:
Factors that are reducing and therefore protective include fresh vegetables (not overcooked and preferably raw) and especially freshly juiced green drinks, olive oil, low stress, clean environments, low EMF exposure (aka avoiding cell phones and unshielded house currents), and avoiding drugs that induce P450.
Oxidative stess will potentially amplify XMRV replication. The biggest amplifier of oxidative stress is NF Kappa B and one of the best inhibitors of NF-kB are the artemisins (Artesunate and Wormwood). Artemisins are also thought to be useful in cancer.
Olive leaf extract
Phyllanthus niruri (an herb)
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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emla999/Lyme
Frequent Contributor (1K+ posts)
Member # 12606
posted
I thought some of you might be interested in this.
posted
Just my 2 cents....I had a friend that went through 2 years of Viral Therapies with the harshest drugs and he got worse....very bad. Most viruses are opportunistic.
Posts: 136 | From Arizona | Registered: Sep 2008
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Bears,
By "the harshest drugs," do you mean the ones they use with HIV? There is a common protocol for HIV where they will combine 3 or 4 antivirals, but it isn't the usual Acyclovir, Valtrex, etc that we Lymies deal with.
I had been wondering if some of those harsh HIV meds would be helpful with any of this.
Posts: 4590 | From Midwest | Registered: Jun 2008
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Check out Peggy's blog http://peggymunson.blogspot.com/ in te fist blog entry about xmrv she also mentions Cheney and Lyme briefly.
Posts: 366 | From Europe | Registered: Nov 2008
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posted
Peggy mentions her severe chemical sensitivities. I had terrible chemical sensitivities when I first became ill. I was diagnosed with CFS but luckily a friend sent me to an LLMD and I had Lyme, Bart and Babs.
As soon as I began antibiotics my chemical sensitivities began to dissipate. I now have none after 2 yrs of treatment. I think these infections sequester in the liver and cause severe porphyria.
I wonder if Peggy ever went to an LLMD?
Posts: 770 | From USA | Registered: Jul 2006
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
HIV drugs or anti-virals may not be effective for XMRV. It's a retrovirus & it's different than HIV (from what I've read). The drugs probably need to be something specific to apply to XMRV - if that's what needs to be treated.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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posted
Peggy is an outstanding writer. I'm not sure I get all her points, but she is a pleasure to read. I wish I had the crackling energy that's in her prose. Hell, I'll bet she does too.
Posts: 845 | From Eastern USA | Registered: Jul 2006
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posted
Hello I am cured of ME/cfs on antiretrovirals viread and raltegravir. I do not have lyme.
Posts: 8 | From Europe | Registered: Apr 2017
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posted
Need to start on low dose and build it up to full dose
Posts: 8 | From Europe | Registered: Apr 2017
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Rivendell
Frequent Contributor (1K+ posts)
Member # 19922
posted
JamesNYC
I agree with you and have the same concerns. All of this research is so valuable and yet it falls into corrupt hands that want to protect profits, and investments, and we end up screwed.
I hope this research can be used in a positive way. There has been research proving that lyme still exists after adequate treatment - why didn't that make big headlines?
And I do believe viruses also cause chronic illnesses. I think all these infections work together.
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